Saturday, December 26, 2009
Since he was just starting finals when I became aware that he was getting frequent headaches, I didn't want to go into a lot of detail with him at that time, over the phone and just had him keep a log of how he was feeling along with any symptoms to try to get a broad idea of what was going on.
After he got home, we went through his log. I can see from this little time that I need him to keep up with his diary along with much more details. We talked a little about Migraines and the importance about finding out more about his headaches. I'm still not ready to say he has Migraines because we need the details before we can really take his care to the next step.
For all I know, he could just be getting tension headaches right now. He just started keeping more detail so we can get a better picture. He has had at least two headaches since returning home a little over a week ago.
Migraine disease is tough enough. Everything around it demands our patience. Whether it's starting a new medication or trying to find out if another loved one may have inherited this disease, it takes time. Only time and a detailed diary will help tell if my son has Migraine disease or just had a bad string of tension headaches.
Friday, December 25, 2009
I don't know how to fix it, but I know our health care system is broken. I can't imagine going without any insurance, but sometimes I wonder about the insurance coverage people already have. There are people who are not insured and others who are underinsured.
I am currently struggling with a Migraine medication change because the portion of my prescription was going to cost a little too much for me to be able to manage. My doctor said if it was working one hundred percent, then maybe we'd have to try to stick with it, but that really wouldn't change the fact that my portion of the cost is just too much for me.
Other issues I've run into is where I feel like the insurance companies are overruling what my doctor has prescribed for me without even seeing me. How can these pencil pushers decide what is better for me than my doctor, who examined me and has been trained to treat me? How can they limit the doses of medications, such as triptans, my insurance will cover when my doctor feels that is best for me? My doctor and I know how to treat me without complicating matters by creating Medication Overuse Headache - When the Remedy Backfires.
I knew last year that my insurance needed help after my son went to the ED for some stitches. It was late so there were no doctors offices open and our only real option for him was the ED. After three stitches, our out of pocket expense was over a thousand dollars. Now that is ridiculous and supposedly I have good insurance. I can't imagine that. I am not complaining about contributing something toward the care we received, but a thousand dollars seems a bit excessive for three stitches.
I don't like partisan politics and can't understand why our politicians don't work together to get a good reform bill out there. Health care reform should be bipartisan and politics should not get in the way. I want what is best for the American people not for some political party's agenda.
It's time to stop playing these political games and for all of our politicians to start being leaders. It's time for them to lead the charge for true health care reform for all Americans. You can read Teri Robert's post on Migraine Treatment - We Need Health Care Reform Now! and join her new facebook group, Open Message to Congress on Health Care Reform.
It's Teri's goal to get enough people to join the group so she can point the group out to Senators and members of the House. This will only work if she can get thousands of members. We really need to have some changes to the way our health care is managed now. One way to help would be to join this facebook group and to ask your friends to join too.
Saturday, December 12, 2009
Of course this helped the grumblings to go on in my head; lack of sleep, icky weather, the pleasant drive. I really got so much accomplished during my visit. I let her know my prescription plan drama. My idea of a medication to replace Topamax was met with a real partnering manner and this is also a weight neutral drug option. Yey. I got the name and number of a pediatric neurologist which she wrote down for me. When she was writing out all of my prescriptions, I was even able to get her to write out a new prescription for an epipen which is expiring this month.
I'm nervous about coming off of Topamax as I've been on it for over three years and I have had a pretty positive experience with it. There are things I have always questioned about Topamax and if its affects were actually the Topamax or not. I guess I'll find out the answers to those questions now and save a lot of money in the meantime.
There are a couple of other things that make me anxious about coming off of Topamax. I have heard of some people who came off of Topamax when it was working for them and when they tried to go back on it, it didn't work for them any longer. I am also concerned because the last time I came off of it, I was put on a different preventative that didn't work at all. My neurologist at the time didn't believe me and reluctantly switched me back to Topamax at my request. At that point in time, I did not know my neuro did not believe me that the new med wasn't working. I found out that fact later. I didn't know enough about Migraine disease back then and hadn't learned to be strong yet.
My current doctor mentioned that she could write a letter to my insurance company which may help me get a reduced rate for Topamax. I didn't even have to bring this up! This is the same thing that some of you had told me about too. However, I think I want to try the other med first despite my worries, but I will keep this in my pocket. To drag past doctor ghosts back again, I once had a doctor who had a sign posted in their office that basically said they would not have any interactions with our insurance companies for any transactions and especially for something like this. That still blows my mind and then my current doctor was volunteering to help out and get involved. What a difference in service on many different levels!
I did fall down during my visit when I asked about her comment during the last visit about generic Topiramate and how if it only works for a very small number of her patients, if she or it ever gets reported to the FDA. I draw a complete blank as to what she said. Total no recall except that she did answer me. I didn't write any of her answers down this time and I don't have a tape recorder. I've gone out to the FDA site a few times myself and one of these times I'll figure out how to report my side effects. I have to.
When I called my SIL to let her know about the new Pediatric Neurologist's name, she invited me to go to the appointment with her! Of course I was excited and honored to be asked while accepting the offer. I let her know some days I could not take off from work, but I would definitely want to go if she wants me there.
I really want what's best for my niece and I think my SIL feels a little lost when dealing with Migraines. She has a better idea about them after I gave her a copy of Teri Robert's Living Well With Migraine Disease and Headaches book, but she feels she still doesn't know what to do for them for her daughter.
They have gone to some other neurologists, but I don't think those visits went very well and I think that's one reason my SIL wants me there. I've tried gently guiding her, but she starts to get lost since there are so many different things to know about Migraines and it probably helps having personal experience with them.
I don't know what to expect from a pediatric visit as I'm sure my reactions would be much different for my niece than if I were going for me. I have to do what I can for her, but children are a whole new world. My doctor was telling me that children react very differently to medications as when adults take the same med.
Anyway, I think I got a lot out of this last doctor's visit. I hope this medication change goes as smooth as it can. I already feel the effects of titrating down on the Topamax. I know how long it will take to switch over and start upping the new med. I can do this yet again and endure the change while working. I have to...
Thursday, December 10, 2009
The Alliance for Headache Disorders Advocacy (AHDA) has made us aware of this fact and let us know that Senator Klobuchar of Minnesota, Senator Collins of Maine and Senator Brown of Ohio have offered a bipartisan amendment to the Senate Health Care Reform Bill that would add Neurologists to this incentive program.
The amendment would not only help headache patients, but would include other neurological diseases such as ALS, Parkinson's, Brain Injuries, Alzheimer's, Multiple Sclerosis and so forth.
What can you do to help? It really, really is easy. You can contact your two Senators RIGHT NOW through the AHDA website to urge them to co-sponsor the Klobuchar amendment.
It took me less then 10 minutes to email my Senators and I added a few words of my own. You can add comments of your own too, but you don't have to when you Email Your Senator. This link brings you to the AHDA website where they make it easy for you to send the email with a few mouse clicks in a few minutes.
It is truly that simple and that important. Please take these few moments now to help toward this worthy objective.
Saturday, December 5, 2009
Pam has not had many Migraines and only really started experiencing very occasional Migraines within the last year. Since they landed in Florida, she has had a pretty much constant Migraine.
At first she thought her glasses were contributing to how she was feeling so she put in her contacts. She ended up ripping a contact and having to walk around with only one contact in! She said that was still much better than wearing the glasses for which she has a new prescription for sitting at home. Oh boy.
Since I know she is not prepared at all for Migraine, I tried to offer her whatever I could think of that she would have available - being away from home and not really knowing how to care for a Migraine except for what we have talked about around me. Since she is usually my sounding board, she should have an understanding of what I go though and tell her.
She always texted me while she was out and about - day and night. I told her to make sure she always wore her sunglasses, drank plenty of water and ate no matter how she felt. I know she tried to get plenty of sleep and at least one day she was able to sleep from 6 pm until 10 am which is amazing with four kids whose ages are pretty spread out from five to twelve. I also mentioned ice packs, peppermint and other helpful tools I could think of that she would have available to her or could get easily while away. She really had a miserable time with the nausea and other symptoms.
I'd have to say this was probably the worst family vacation she has ever had. The sunglasses didn't help much with the laser show either. (I didn't think they would.) I hope she at least kept her eyes closed or back toward the show. I haven't even mention yet that three out of the four kids ended up with some type of unknown itchy rash and the husband was coughing up a storm.
Luckily they are headed home now. Hopefully the flight is not the topper for her trip. I know we are going to have a lot to talk about after she settles down from her trip. She also went into the trip very sleep deprived which would not have helped her get off to a good start.
I've already picked up her Christmas present, but I will add a little something else for her this year. Although I have given away many copies of the Living Well With Migraine Disease and Headaches book written by Teri Robert, I have not given my sister a copy yet. This will be something I cannot go any longer without giving to her. If I saw her before Christmas, I would probably just give it to her then, but I probably won't and this way she'll have something extra to open up. I bought a bunch of extra copies when amazon was having a super sale on the book since I have a tendency of giving this superb book away. It is truly the best place to start or continue to learn about Migraine disease.
I hope my sister was able to salvage some fun out of her family vacation. I guess I'll find out soon enough. Poor girl...
I know a lot of people who started showing signs while in college. Most of my family members have started younger, but then they are girls and there's my sister Pam who, at her ripening age, has only recently started having Migraines which also seem to be coming more frequently and violently.
I'm not sure that I'm handling his situation correctly, but I don't want to full out alarm my son yet, put things into his head or have him feel like I view everyone as a pending Migraineur either so I didn't come out and mention Migraines to him. I asked him about his symptoms; the ones I stated above. I also do realize that he could just have had a string of colds which I would really be ok with too or even tension headaches at this point.
Anyway, I've asked him to write down how he feels everyday until he comes home for winter break. As you can see, I also avoided using the word diary and especially Migraine Diary or the fact that this is something I have done for my Migraines as I am trying to avoid this connection with him. I don't want to overreact with him in this scenario. I don't want to keep him in the dark about things, scare him or have him start worrying about Migraines. He has enough on his plate right now as finals are here. He has had a lot of pressures during his first semester and he says his grades are good.
I know he is full aware of my Migraines and I've told him about my symptoms in the past especially when I had a talk with my boys about what Migraines are. It was my older son who vehemently warned me that I better not have given him anything when I told them it was a genetic neurological disease. He made me laugh. Now I hope my younger son has just had a couple rounds of colds and will keep up his daily documentation on how he is feeling so I can get a better look at what is going on with him.
While growing up, he never showed any other signs. He was never car sick or anything like that, but within the last few years, he has told me that he has some sensitivity to light especially while driving at night. When I call his dorm room, it is so loud. He is not used to loud living accommodations as you could imagine I would go bonkers if my home were loud and he has had his own room at home for many years. This could be attributing to his headaches as well and his roommate is a night owl; my son is not. Although I do believe he is getting enough sleep, it may not be the quality he needs. Don't get me wrong, they get along very well and it's not my son complaining about these things, it's me but then I'm not living there. I'm only complaining to you guys and I like his roommate otherwise.
I will keep my fingers crossed that my curse has skipped him and that he just has a lot of contributing factors to regular or tension type headaches right now along with some cold symptoms. I would hate to pass this down, but realistically know that even if it were to skip him, it could hit others down the line. I can only hope that as time goes on, there will be more advancement in the treatment and prevention of Migraine disease for everyone.
Sunday, November 29, 2009
I was able to give my older son an impromptu education lesson today that he could really listen to and learn from after he had an experience with someone else having a Migraine. Right now, my son is going to school while he is also a firefighter in training. He should be full fledged in less than a month which he can't wait for. In our area, they also take turns riding the ambulance.
Today, he told me how he had a Migraine patient which he had to take to the hospital. He talked a little and seemed unsure about what he should have done for her. Heck, if you think about the amount of training a doctor gets with Migraines, can you imagine the confusion with other people in the field? I'm sure he was a little more sensitive, but didn't really know what to do because I mostly just take care of myself with not too much complaining. I usually save that for here :-).
It was really neat how intently he listened. I explained about not turning on the lights and talking in whispers. She wasn't sick to her stomach which was good because I don't think he could have handled that, but then he is always surprising me by what he does and how well he does it. I talked about flashing lights like on the ambulance. He said they did cover her eyes when they brought her outside. Excellent.
It is really amazing to see your little boy all grown up especially since I know he prefers blazing fires to first aide. I'm sure he can look back and see how much richer he has gotten by taking this on in just this short time as part of his responsibilities and I know the first aide part is not his forte. He actually had a successful CPR not too long ago too.
I have a little more to tell him about Migraines that could help him. I don't know why I never thought about how he might be called away to help someone with Migraine on the job. He should know what to do if he comes across someone else with Migraine or later on, that's much, much later on, when he has children of his own, he may even have a Migraineur of his own and it would be helpful if he had a better idea of how to help. I'm so proud of my soon to be volunteer firefighter.
Friday, November 27, 2009
Luckily, our weather was in the mid fifties so the little ones could play outside until dinner was ready, but then when dinner was ready, oh boy, did it get loud in the dining room. Yes, everyone was in one room. It was actually a combination of the living room and dining room except all of the living room furniture was removed and dispersed around while tables were brought in to make two long tables to fit all thirty-six! Ok, so you can say really, really loud now? Then, someone got the brilliant idea to flash the lights to try to quiet it down. Argh! I guess this is a normal thing to do - just not something I would ever do to torture, I mean, something I would ever think to do since I know the consequences it could cause some people.
If I look back now, I know of at least three active Migraineurs in that room including myself. One of the nine year olds still has no clue as to what triggers her very, all too regular Migraines and who knows if flashing lights could do it. (I bet you can guess where my vote would be on that one.) I know how I felt after the lights were flickered for the second time. It was a very nice dinner and helps that I know which foods I can have and which I can't. After the dinner when I went back in the kitchen, I noticed I needed to turn off some spotlights that were on. No one said anything, but it made a world of difference to me.
It was on the verge all day long. I tried to be especially careful with everything I ate and drank the entire day. I'm sure this helped keep me from needing to medicate a tender head. I did not stay in the kitchen after all and found it nice that the spotlights remained off as it still helped every time I walked through.
I hope you had a very Happy, Healthy Thanksgiving.
Saturday, November 14, 2009
My suspicions kept growing at every little step. The drive to work proved that it was going to be more than a regular Migraine coming on. I can usually tell by how I react to the other cars lights, especially flashing police lights and I tend to be a little more impatient with traffic even if I'm not in a hurry and I had plenty of time on this morning plus the traffic wasn't even that bad. Besides my suspicions, these were the first real symptoms I was getting that the inevitable was really coming.
I arrived at the office earlier than usual and based on the timing of my big conference call, I decided to take a triptan then, before things got too out of hand. This would give me enough time to get adjusted to the triptan - allow it to take effect and settle in. I liked my old triptan before it started to fizzle out. I never had to plan things around taking it. It would always work very quickly with little to no side effects. We decided to stop it before it completely failed in the hope that I can go back to it at a later time.
It's terrible having to go into an important conference call not only worrying about about running the call and everything around it, but add to it all that encompasses Migraine disease including the brain altering drugs that we must take in order to try to get through an attack. I am aware when a bad attack happens that I tend to stutter more and fumble over words. That's not good on a conference call when how you sound goes a long way for how the call is going especially when there are people on it you have never talked to before and they don't know you or how you operate. I am also much slower on my cognitive feet when Migraining. Not good.
As the conference call started, I'm sure the triptan helped keep some of this quieter, but I was at a higher Migraine level than I am comfortable with given the situation. I needed to be here for the conference call that I scheduled with different groups of my company from around the country. I had to understand multiple issues that were going on with one of our clients which needed to be reigned in and controlled by my area that I had not been involved with previously. Yea, lucky me, lucky day especially since my boss was on the phone listening and judging my every move and every question.
Somehow I made it through the call without sounding too unsure about what I was doing or at least I hope so. My pain level was slowly rising and I still had other conference calls on my schedule to get through but at least I was only playing a small role in those calls. I wouldn't take another triptan while I was still at work. I do draw a line there so I needed to think of other ways or other tools that I could use.
Although I didn't feel hungry, I decided I would try to eat a little something and then I could put a warm herbal pack I keep at work on the back of my neck and forehead which can be heated in the microwave. That can help put off a growing Migraine for a little while for me.
The herbal pack also has a mint smell to it so I made sure this wasn't a day I was going to be super sensitive to this smell. Luckily it was not one of those days. The food and herbal pack helped somewhat. Being at work, I couldn't take a warm shower which will usually help me prolong a Migraine. I made sure I drank some extra water and took some deep breaths. I printed out as much documentation as I could for my other calls so I would limit the amount of time I needed to look at the computer screen.
I made it through the rest of my series of calls. This would have been a day I left work early, but I ended up leaving on-time which is actually somewhat early since I usually stay two plus hours after I'm supposed to leave almost everyday.
As soon as I made it home, I took my second triptan of the day along with my nightly medications and retired for the night. I really needed both - the triptan and the twelve hours of sleep. I woke up the next day feeling much, much better.
How do you handle a day you need to be at work? What kind of tools do you have in your toolbox while at work? I'm sure they're different than the ones you have and can use while at home.
Sunday, November 8, 2009
This year has been a very exciting year in the stands at my son's football games. Most of the games have been decided on the last play of the game. No kidding. You can only imagine how loud the stadium can get from fans on both sides. We sit in metal bleachers.
Add to that that this last game was a battle for first place. To try to incite our fans to get even louder, our loudest and heaviest footed fan start moving around, stomping harder and screaming all around the stands in our section. During the first half, I kept popping peppermint to keep the nausea feeling down and drinking some water. This did help things, but I knew I would not be able to fight the additional screaming and shaking of the stands. Don't get me wrong, it was another very exciting game that ended on the last play.
I ended up scoping out other places I could go to watch the rest of the game. Initially I was standing out of the way, but found I really needed to sit. I saw what I thought was a quiet area and parked myself there. Unfortunately I was a little boxed in and after a couple of minutes, I was joined by another fan who was very vocal and then noticed I was right under the loudspeaker. Some days, that's just the way things work out...
Luckily this fan ended up moving around alot without stomping and the loudspeaker wasn't as bad as where I came from. I didn't feel the need to pop any more peppermint either. I was also far enough away from the other team's fans who all felt a need to bring a few cow bells each. I think that would have sent me over the top with any close exposure.
It still would have been nice to have found someplace else to retreat to and I would not like to say it, to have been isolated since this can be such a lonely disease as it is, but at least I was able to wart off the beast this time which I'm not sure I would have been able to do had I stayed in my original, assigned seat. I may opt to either go higher in this section the next time if I feel a need to move from my seat or perhaps scout out some other site around.
After the game, my son and I went out for a nice quiet dinner. It's always nice to spend time alone with him. However, he mentioned something that bothered me. He didn't say it to hurt me nor did he know how I would hear it. First he asked who I was sitting next to. I thought it was great that he saw I had moved and found me. He is such a sweetie. He completely understands everything I go through with my Migraines and knew why I needed to move.
He then said that sometimes the players get bothered when the other team's fans are louder than our own fans in our stadium. I am all for our fans and the other fans cheering and making noise. This is why I chose to move from my seat. I don't want to stop any of that, but I also know I can't contribute to it or it will add to my own issues. My son understands this and said so.
I sort of apologized for not contributing to all of the noise. He told me I was being silly; that he knows. I know I have mom's guilt. I know I want the boys to feel the support of their fans. I know I have a terrific son. I also know I will still do what I need to do to help keep my Migraines as calm as possible.
By the time we were done with dinner and I dropped him back off at his dorm, I was ready to drive back home safely as my body was pretty much back to normal. I have to say, I love him being so much closer to home than his brother was when he went away to school. Plus I love this football excuse of "having" to go see him.
Friday, November 6, 2009
I probably never would have questioned anything about the generic being different than the brand if it wasn't for two different articles I read which were written by Teri Robert: Topamax or Topiramate for Migraine - A Difference? and Did You Know Generic Migraine Medications Can Vary? If I didn't read these articles, I think I would have thought it was either my other medication acting up or the Topamax starting to not work as well or my Migraines had started changing yet again.
I've been busy doing many different things since reading the articles and think I have finally decided which path I want to or have to try next given other factors that come into play now too.
I started to notice that the generic prescription wasn't working quite the same. After I picked up my second prescription of Topiramate, I saw the tablets looked different than the first although the labels on the two bottles were exactly the same - even where the manufacturers name went. My pharmacy confirmed that the bottle was mislabeled with the wrong manufacturer name and gave me the correct name. The second generic manufacturer tablets seemed to work a little better than the first.
In Teri's first article above, she recommends the following: "If you're taking topiramate and switching to the generic, keep your prescription bottles. The bottles should have the name of the generic manufacturer on the label." I concur. I would also say to keep a log of any changes in how you feel. I honestly didn't know until after I read those articles. I wish I knew earlier or kept a better diary of these types of changes.
In Teri's second article above, she explains why the medications from generic manufacturer to generic manufacturer may be different: "It turns out that FDA standards on generics and bioavailability are rather loose. Bioavailability is the rate at which a substance (such as a medication) is absorbed into the body and made available at its site of action. What's interesting is that current FDA regulations allow the bioavailability of a generic medication to range from 20% below that of the original brand name medication to 20% above. In an extreme case, there could be a 40% difference in bioavailability between two generics made by different manufacturers."
In the beginning, I wasn't paying much attention to the differences when taking the two different Topiramate tablets, but I did notice that the first few times I started a new manufacturer that I felt a little buzzed. My Migraines were on the rise, but I also changed another medication when I initially switched to Topiramate and needed about three weeks to titrate down from it before starting the new med. I hadn't really considered the change from brand to generic a big change at the time. I will know better for change management purposes if there is a next time.
During my last doctor's visit, she wanted to switch me back to the brand name Topamax since her experience was that generics didn't work as well for her Migraine patients. I probably made a mistake when I told her I wanted to try the generic a little longer to make sure I gave it a fair try, to make sure it wasn't the other medication change and because the price difference was tremendous. I have since started my third Topiramate manufacturer, but this time I went through my mail order pharmacy. This time, I felt a little more than buzzed.
I started paying attention to more side effects with the third manufacturer. After a while, I felt like I had a knot behind my forehead which would not go away and would often trigger more Migraines. I got the brilliant idea to switch back to some left over Topamax to see how that would work out.
My results? The knot has gone away and the Migraines have calmed back down some. In retrospect I have also noticed that my daily nausea is no longer around which I hadn't even attributed to the Topiramate until now - a good two plus weeks back on the Topamax.
My predicament? We just received our open enrollment information for next year. Our prescription plan is changing. We're going to a three tier plan. Bottom line is Topamax is a non-preferred drug where if I wanted to use the brand name, I would not only have to pay our maximum plan amount for prescriptions, there would be a percentage penalty on top of that maximum plus I would have to pay the cost of the generic. What? Yes, you heard me right: max amount + penalty + cost of generic. All of that would make the prescription cost over seven times more to use Topamax than it would to use Topiramate. That's a huge difference per year.
My other option would be to keep trying different manufacturers of Topiramate until I can find one I can work with. I emailed my mail in pharmacy to see what options I would have if I had one manufacturer I wanted to use since there appear to be differences between manufacturers; would I be able to request it from them? Here was the response I received from my mail in pharmacy:
"To receive a generic medication from a specific manufacturer, please obtain a new prescription from your physician. On the prescription, your physician must indicate the specific manufacturer needed, indicate "DAW" (dispense as written) on the prescription, and indicate the medical reason for needing this specific manufacturer. When the prescription is received, a pharmacist may confirm the need for the specific manufacturers product with the prescriber. Based on the information received, the specific generic medication may or may not be ordered."
I would be able to request the one manufacturer, but I would also have to go through a lot of trial and error to get there, to find the one manufacturer that worked for me. I've also been reading some things about a pharmaceutical Orange Book. In just glancing through Topiramate, not really understanding everything I was looking at and without checking with my doctor or pharmacist, I think I've decided I'd like to go a different route right now.
I know a lot of people either like or don't like Topamax. It has helped me for over three years and I have never really complained about it. The benefits have always outweighed the detriments although there have been many times I have questioned if I should really stay on it or not.
As of right now, I am going to talk to my doctor during my next visit about trying a different medication in the same class. I admit I am nervous about the change for many reasons. Topamax and I have been through a lot. More good; not too much bad. Thank you Teri for the eye opening articles!
Friday, October 23, 2009
In order to attend the Teleconference, you must register ahead of time. It's real simple and the Teleconferences are all offered free of charge. For more information and to register, visit Megan's Free My Brain From Migraine Pain site. You will also be given access to recordings to many of the great previously held Teleconferences you may have missed.
Join the party and don't miss out on the fun! The more the merrier. Register now for the next call on Sunday, October 25th.
Although I wasn't officially diagnosed until a little over three years ago, it will still be forty years ago sometime this year when my mom brought me to the doctor who told us that I only had headaches and there was nothing he could do about them.
Do you really celebrate years of Migraines like you do birthdays or anniversaries? I don't think that's something I really want to celebrate even though I have learned so much from having Migraines and from the Migraine communities and not just about this disease.
In one way, Migraines have taught me to ask more questions; to stand up for myself; to stand up for others; to write my congresspeople; to question doctors; to partner with doctors. One of the hardest things to learn is to say No. No to foods that you love to eat; to foods you want to eat so you don't hurt someone else's feelings; to someone you have already said Yes to, but have to turn down last minute because of your health reasons. Both of these lists could go on and on.
In my undiagnosed years, I got real good at pretending everything was great and most of the time I didn't even realize when I had a Migraine. I know that sounds funny and hard to believe, but I do remember days of holding my head together because the pain was so bad where nothing I would take would touch the pain. I also remember thinking that I couldn't imagine what Migraine sufferers must feel like if just headaches were like this.
I didn't know much about Migraines and every time I thought about looking them up on-line, it was usually in the middle of one of these really bad headaches which wasn't a good time to look up anything on the Internet. I guess I can count my blessings that I had a bad incident at work where I really needed to find out what was going on and finally, finally looked it up.
The three plus years since my diagnosis almost seem like a lifetime. I have gone through a compilation of doctors, but plan on settling in on my current doctor for a while longer. I have not only learned more about me, but have grown in ways I never thought possible. I wish I had more time these days since I still have so much more to learn about Migraines and medications.
On the other hand, I've already grown so much as a person; is forty years long enough to have had Migraines? I think I'm ready for the Migraines to go away now or am I missing some other positive things I can still get from them? Happy Anniversary?
Sunday, October 18, 2009
I had a blast this year on my new team. I switched teams after I was having problems with some smoking going on where we were competing. When I mentioned something to our person in charge, I was told to 'deal with it' and she's not even a smoker. You see, smoking is a Migraine trigger for me. I have enough environmental triggers around that I don't need other people's bad habits around triggering a Migraine.
I originally tried taking the upper road and decided to try to communicate with my team leader about what Migraines are since she may not have had any experience with them, but she completely shut me out.
Not too many people know this, but I actually dealt with this in two ways. The first way I dealt with it was that I switched teams. We (some friends moved with me) ended up having so much more fun on our new team than we had on our previous team even before I was told I needed to deal with it.
The other way I dealt with it? I wrote several emails to our township parks and recreation director about banning smoking in our parks. It has taken almost a year and a half, but it is scheduled to come up for a vote before the end of the year. Honestly, I couldn't believe that smoking was still allowed in public parks where kids are running all over the place.
I never used to be so bold or at least on this level. In some ways, I think realizing I have Migraine disease and learning that I have to take matters into my own hands has helped me deal with things in other areas as well. I think once you learn to take doctors head on (pun intended), that you learn you have to take control of other areas too; not to mention that hopefully this will help eliminate another area that I am faced with a Migraine trigger where with any luck I won't be forced to chose between something I enjoy doing and ignorant people doing something they enjoy doing which infringes on the health of people in the parks.
Let's just hope the vote passes.
I mention this now because I read an article that was posted by Diana Lee on Somebody Heal Me called Arkansas Football Player Who Suffered Stroke Had History of Migraines which brings up these fears in me all over again because it had to do with a college football player who had a stroke after having a Migraine. You see, I have chronic Migraines and my son plays division one football. Although he doesn't currently feel Migraines, I know people who started having issues with Migraines while in college and others who started having problems after bumping their heads. He has shown some of my sensitivity to light and I hope that that is all he ever inherits.
I do trust in his abilities on the field, but there was one 'kid' on his team this year, who also plays in my son's position, that hit his head so bad during a game that he was carried off of the field and will not be back for the rest of the season and probably not for the rest of his college career. He could not even remember some basic things a week after his head injury which is very scary especially since academics has to come first out of this whole college experience.
My heart aches when I hear about young kids (and really anyone) having Migrainous strokes or are injured beyond being able to do something they love that especially had the added bonus of helping them further their education.
This article is a great reminder to us all that when we do have Migraines or head pain, that we really need to take care of ourselves. Here is an article about Status Migrainous - The Basics written by Teri Robert and another article about The Significance of a Bump on the Head written by Nancy Bonk. Nancy is one of those people who really did not start experiencing chronic head pain until she fell and hit her head.
Please take care of yourself and do the right thing.
Sunday, October 11, 2009
Last football season, my son was a senior in high school where by the end of the season I noticed I would get a Migraine after all of his games. I know some of the triggers were the sun if it was during the day, the lights if it was at night and the loud bands (sorry band parents). I would wear a hat, sunglasses, would not sit near the band and drink plenty of water especially on the hotter days.
This year has a few more challenges. He is playing ball in college and I'm noticing even more triggers besides the increased noise level. I'm taking the same precautions that I did last year, but I'm sure part of the reason is that the high school was smaller and I was surrounded by my friends.
I'm finding the many different smells are affecting me that weren't there last year. The perfume, the hotdog smell and even the BO. I think every year I keep hoping my preventatives will help, but I'm not there yet and actually started a new medication this month. At least I have a competent doctor this year so hopefully I'll be where I need to be next season.
There are other obstacles to consider now as well which I never thought of before. His games are not as close to home as his high school games were plus I've been made aware of some common sense things that I really should have known all along.
Luckily my eyes were open to some possible ramifications if I were to drive while Migraining by a couple of well researched articles written by Megan Oltman titled Migraines and Our Driver's License and Migraines & Driving Don't Mix. Of course taking drugs and driving would be something you would think not to do, but since a Migraine is more than just a headache, it really would not be a good idea to drive straight home if I can't put off a game induced Migraine.
His school is not in my town, county or even the same state so I've had to build in extra time or even an overnight stay into my football day if I want to attend his football games. I know I always have the option of not attending, but if your child was involved in a high contact sport could you not attend? I didn't think so because neither can I.
At this point, I work harder to find the right preventative and to try to prevent the football induced Migraines. I have to go to his games because I want to be there for him no matter what plus it gives me that opportunity to see him without feeling like I'm crowding his college experience or at least that's what I tell myself. Plus when I come to his home games, we go out to dinner which he definitely likes to do.
Saturday, October 10, 2009
Needless to say, his butt is getting kicked on a daily basis from different sources. He recently confided in me, since I have Migraines too, that now his wife is starting to hassle him. Instead of understanding what he is going through at this time, she said to him, "Is this my life"?
What the heck? He thought she understood what he was going through yet she asked him if this was her life? What about what he is going through every single day? Does she think he likes 'what he is doing to her'? I mean, does she think he likes popping pills that give him daily side effects which will zap his energy and make him feel icky where he has to decide whether the treatment is better than the disease? Does she think he likes being in almost daily pain? Does she think he likes failing at work because of the pain and the drugs that are supposed to help him? Is this her life? Or is this his life?
I did send him some information that I hope he will share with his wife and help them both. The first article is Migraine and Headache Education for Those Who "Don't Get It" which basically has materials that we can share with people who don't understand how debilitating Migraines and headaches can be.
The other article Migraines, Headaches and a Disturbing Pattern is to help us deal with those people whose negativity and lack of support are sapping us of our will and energy to manage our Migraines and headaches.
I'm sure she didn't 'sign up for this', but do you really think he did? So let me ask again, is this her life or is this his life? Right now, it's their life and would be much better for both of them if they could go through it together.
Saturday, October 3, 2009
I found these statistics in the article from the study very interesting: The prospective study of 509 Migraineurs resulting in 1,527 Migraine attacks found that 28% of workday Migraines resulted in absenteeism while 11% resulted in a full day of work lost, 5% led to a late arrival, and 12% led to leaving work early. Presenteeism, staying at work with a Migraine, was observed in 62% of workday Migraines.
First of all, I will admit that I am usually a presenteeist. This is something I have struggled with almost everyday. Even before I realized that my just headaches were Migraines, I knew there were times I just couldn't function as well as I should. What was I supposed to do? Call out for just a headache and almost everyday? And because I had always worked through my just headaches, could I really change my patterns now?
I'm sure this is one of the roots of my Migraines, but given my situation, I find it hard to make another choice on a consistent basis especially since I bring in the only income for my family while I have two children in college. I am trying to work on doing what is best for me and my family. I have called out a little more, but it scares me every time I do and still makes me wonder if I would have been better going into work. Some days probably yes, other days definitely not.
Part of my perpetual cycle is because I am sort of part of the presenteeism statistic because when I know I am not putting in a full day of work on some days, I don't feel like I can leave until I have put in my honest day's work. How can I leave until I have worked a real day for my employer? It's also easier to work later because it gets much quieter and my head actually feels like it gets cooler or is not on fire and settles down more. I don't want to do the wrong thing for my employer and I don't want to do the wrong thing for me.
Do I go to work or stay home?
This is why I work so hard to find the right doctor so we can work together to find the right preventatives. We will get there. We have to. At least I wouldn't be asking myself this question as often.
Friday, October 2, 2009
In the beginning of my visit, I caught my doctor off guard. I bluntly asked her how often she got Migraines. I think she was anticipating my next question and answered both at the same time. She said she gets them about three times a week and doesn't currently take a preventative. She said she will typically get them when her stress level is high and only got a Migraine one time because of a food. My doctor spoke about how she was on Topamax at one time and how much she likes her maxalt.
We continued to talk about when to take our triptans. I confessed that I often have "the struggle" about whether or not I really need to take a triptan this time or as Megan from Free My Brain wrote about the Second-Guessing Game. My doctor said she understood, but that the sooner we take it the less side effects we experience, the quicker the relief and the better off we are. She even confessed that she has had this internal struggle in the past and knows from experience that the sooner we take it, the better off we will be.
At the end of my visit, I didn't mean to say anything, but as she was writing my six scripts, I held them up and said something to the effect of how sad it was that there were so many from this visit. She put on this empathetic face and said something to that effect. I told her it really wasn't that bad.
I went on to tell her that to me these represented ideas, hope and a new path to try. She smiled because she was happy when she thought of the new medication to try after I needed to stop the beta blocker. I just thought she was cute (not really the way I ever anticipated I would be describing a doctor of mine).
I still feel like she is full of ideas and will continue to have them for a while longer. I also know that she knows what we go through which can only help. I am still so glad I found her. Such a big difference from every other doctor I have gone to for Migraines!
There's a new blog in town. The AHDA HeadNotes blog has been brought to us by the Alliance for Headache Disorders Advocacy (AHDA).
This blog will provide us Migraineurs a place we can go to get the latest information on legislative issues and share our thoughts about advocacy issues.
Teri Robert wrote a nice article on Migraines and Health Care Reform which explains how this phase in period won't even begin for some groups until 2017 and can take five years from then to be fully implemented. Under this current structure, preexisting conditions and annual and lifetime limits on coverages will not be completely eliminated until 2022. That's 13 years from now!
How can you help?
You can write your Senators telling them what we need from them. There is a letter already written for us which we can send as it, edit at will or just add a little bit to it. The system will automatically send it to your Senators and it only takes minutes. It can be found on the NPAF Website.
I personally don't know what needs to be done with health care, but I know something needs to be changed. When my son when to the ER to get three simple stitches (it was off hours and no where else to go) put into his chin and our out of pocket expense was over a thousand dollars, I knew something needed to be changed. With Migraines, things aren't as clear cut or as simple as with stitches.
Saturday, September 12, 2009
Her friend is a lawyer and has become very sensitive to light. The light sensitivity issue is right up my alley! I told her about what my employer has done for me and where her friend could find additional information which may help her and at least give her direction to get started with.
The feedback she gave me when we met up again was that her friend and her friend's mother were beyond thrilled with the information they received. I am hoping this also means that her employer will be willing to work with her now.
I also explained to my cousin that my employer happily made light accommodations for me that were reasonable. Even though I have problems with other lighting on my floor and in other people's offices, it would be unreasonable for me to ask for light accommodations all over my floor. She laughed and understood my point about reasonable accommodations under ADA.
I also explained to her that there are at least two lawyers on the site I listed in my email who are no longer practicing full time because of their Migraines so her friend may benefit by reaching out to the MyMigraineConnection site.
I have included the email I sent to my cousin below, which is mostly intact. I thought it might be helpful to others if you needed to send some type of similar information to someone you know who is in a like situation.
It was really nice talking with you at the lake. I wanted to give you some links and information for your friend with Migraines. I know how hard it can be when you don't know where to go or what to do with something that sounds so normal in everyday life yet nobody, including yourself, seems to understand what is really going on.
Please feel free to give my email addresses to your friend if she would like to reach out to me or even if you would like to ask any questions. I don't check my personal email everyday, so if there is anything that you would like answered quicker, please use my work email address.
Here is a link to the Migraine forum I mentioned MyMigraineConnection. I really trust the Migraine information here. They are very serious about Migraines and the information they pass along.
The head moderator is a well know patient advocate by the name of Teri Robert. She even wrote a book a few years back that I would strongly recommend. Here is the name and a review of that book "Living Well with Migraine Disease and Headaches". My biggest problem with the book is that I have bought it a few times and have ended up giving it away to someone else who has needed it. I feel it is a very good reference book and nice to have on hand.
If you go out to the site, you'll get to know the look and feel of the it. Here is the homepage of the site MMC Homepage. I'd also like to give you some links to get started.
Check the Lighting:
Migraine and Headache Diary:
If you keep a daily diary, it may help you identify some additional triggers or patterns to help you manage your Migraines.
Did you know that Migraines are a recognized ADA disability? Of course you still have to be able to do your job, but if there are any reasonable accommodations your workplace can make for you, they really should. The site has a lawyer who writes some articles (SharePosts) about different types of legal issues we run into without giving us actual legal advice. Here is a link to some of her SharePosts: http://www.healthcentral.com/migraine/c/11175.
I am also very light sensitive. I do have workplace accommodations with my lights. I have sleeves that go over the fluorescent light bulbs that are in my office. The sleeves slip right over the fluorescent bulbs, right down the length of them. About a third of the sleeve is solid colored and then it transitions to a clear color which can be twisted around the bulb to allow different amounts of light to pass through. I don't know where my employer got them from, but here is a website I found which sells something that looks similar Misc Light Sleeve Link. I thought this would at least give you a visual. Without these sleeves, I don't think I could work in the office. The lights affect me horribly where I don't like to go into other offices and when I need to go into conference rooms, the first thing I do is look at where the lights are to determine where I will sit. I notice I also do that in other places as well.
There is a lot of other information on the website. I thought this would give any light sensitive Migraineur enough tools to get started. I do understand how lost, lonely and confusing this whole thing can be; I still feel this way at times! Please feel free to give your friend my cell number if she wants it. I know I don't know all of the answers, but I can listen and understand what someone is going through while sharing some of my own experiences. My workplace has really been great to me. This forum is also another place to go out and see others experiences and ask questions of them. Some people have had a tougher time with their workplace.
Please let me know if there is anything else I can do.
Friday, September 11, 2009
At the International Headache Congress (IHC) conference in Philadelphia, they introduced new studies on chocolate as a Migraine trigger. It basically goes back and looks at previous findings that chocolate triggers Migraines as a new study suggested that cocoa could heal inflamed cells related to Migraines in rats.
Here is an article which goes into more depth about the study: Why Chocolate Studies Are a Headache. The article goes into the benefits of chocolate including how it is one of the richest sources of bioflavonoid antioxidants which counteracts cell damage.
I used to be a chocoholic so I also found it interesting when they talked about having chocolate after craving it before getting a Migraine and how this may be misconstrued by some people into thinking it is a trigger when they were already bound to get one. Since I had to be really sure it was a trigger for me, I had tested chocolate at many different times and still found it best that I stay away from it. I guess I'm not one of the lucky ones when it comes to chocolate.
I hope you find the article as interesting as I did.
Monday, September 7, 2009
1. The illness I live with is: Migraine Disease
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 1970
4. The biggest adjustment I've had to make is: Not being able to finish a prescription and have my disease go away.
5. Most people assume: I like to sit in the dark and I have an occasional stutter or speech impediment
6. The hardest part about mornings are: getting up after a rough night
7. My favorite medical TV show is: House
8. A gadget I couldn't live without is: my laptop
9. The hardest part about nights are: staying awake when trying to learn more about my disease
10. Each day I take _15+_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: am open to different options, but like a warm shower on the back of my neck or top of my head.
12. If I had to choose between an invisible illness or visible I would choose: invisible. It has made me stronger and taught me to better stand up for myself.
13. Regarding working and career: I am grateful my employer makes accommodations for me without issue
14. People would be surprised to know: how often I am in pain, feel dizzy and nauseous while mostly keeping up with life and work or at least so far keeping up this appearance.
15. The hardest thing to accept about my new reality has been: that I may not be able to keep up this appearance much longer.
16. Something I never thought I could do with my illness that I did was: learn as much about it as I can so I could tell if a doctor really wasn't an expert in this medical area.
17. The commercials about my illness: are not adequate enough.
18. Something I really miss doing since I was diagnosed is: whatever I want; whenever I want; where ever I want. I have to think about everything before I do it; before I eat it; where I am; where the lights are, etc. Things aren't as spontaneous as they used to be.
19. It was really hard to have to give up: chocolate, coffee and other foods; unconditional sports (I can do some sports, but I have to wear a hat, sunglasses, limit running, exertion, etc)
20. A new hobby I have taken up since my diagnosis is: reading, journaling, researching, teaching
21. If I could have one day of feeling normal again I would: want to get out and visit with people I haven't seen in a while.
22. My illness has taught me: patience, determination and to trust my instincts
23. Want to know a secret? One thing people say that gets under my skin is: it's only a headache
24. But I love it when people: ask questions and want to learn especially if it is to help themselves or someone they know
25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
26. When someone is diagnosed I’d like to tell them: to learn as much as you can and ask questions until you understand so you can be a good partner with your doctor. If your doctor won't partner with you, find one who will.
27. Something that has surprised me about living with an illness is: how many doctors I have gone to, who were supposed to be specialists, really don't understand my disease or want to understand it. Some doctors seem to want to use a one size fits all resolution when it clearly is not the right solution for me.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring me some safe food to eat and spend some quiet time with me without even being asked.
29. I’m involved with Invisible Illness Week because: I want to share my experiences and hope to show others they are not alone.
30. The fact that you read this list makes me feel: that maybe I've been able to make a difference for someone else.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.
Friday, September 4, 2009
I had really fared pretty well with the recent storms. Just mild Migraines and my cognitive function was kept pretty much in tact too. However, I think I knew something was up even as I was answering this question. I just wasn't myself yet I feel I was subconsciously trying to convince myself that I was fine.
It didn't matter that my cheek was already numb and I was being the biggest chatterbox around. You see, I don't normally like to talk even though I force myself to normal talk when I have to. Being the super talker I was is usually one of my signs that a bigger Migraine is coming on which I know I was trying to ignore as well as the tingling cheek and other symptoms.
It has been a bad week too. I feel like I jinxed myself with the comment. I actually ended up missing two days from work this week because of the Migraine which is something I haven't done before and was still not up to par the rest of the week. I know I shouldn't just ignore my symptoms, but I don't feel like I always think straight at that point either.
I think I want to find some preventative that works once and for all that I will try to convince myself that everything is getting better although I do know that I have been handling the storms better. Luckily the Migraine has been winding down and hopefully I'll be back to normal tomorrow as this is going to be a big weekend that I need to be ready for.
Is it normal to not want to get Migraines that you don't notice obvious symptoms?
Saturday, August 29, 2009
I found a lot of food triggers while performing the tests on the elimination diet. I had stalled in searching for new food triggers for a long time now and decided to stick with the foods I believe are safe. There are a couple of reasons for this decision since I wanted to try to stabilize as much as I could and I have been trying to limit the number of Migraines I get.
After a while, I felt like when I added back foods during the elimination diet, it was more or less a way to make Migraines. I know that's not exactly true, many people don't even have any food triggers and I'm sure there are still foods out there I can have which I haven't added back in yet. I feel comfortable with the food triggers I found although I would probably approach the whole diet differently if I ever did it again. I got tired of creating Migraines when trying a new food although I did end up cutting my Migraines in half by the time I stopped the diet.
Lately, the weather has been so crazy here, there has been so much going on and I've been going through a few medication changes at once. I don't like to deal with so many variables at a time. I like to be able to definitively account for the different side effects and what they can be attributed to. For the most part, that has worked out ok because over the last few months, my medication changes have included increasing verapamil a few times, decreasing topiramate while having it change to a generic brand and also switching my abortive.
I haven't really noticed any additional side effects with the topiramate especially since this has been decreasing and I've been on varying doses of topiramate over the years. The only other variable here was the switch to generic that I don't believe had any significant side effects. Although I believe it has been helping, the increase in verapamil is a different story. There are a few new effects that I have been concerned about and watching. Not uneasy enough to call my doctor now, but I will have discussions with her about them during my next visit.
Just recently, I'm getting confused as to whether one new side effect was due to an increase in the verapamil or the abortive change. I originally thought my swollen ankles were because of an increase in verapamil and it had gone away as I adjusted to it, but the last time I took my abortive, I noticed the swollen ankles were back again. This had never been an issue before these medication changes.
Now I need to be a new science experiment the next time I take my abortive. On top of everything head related I'm sure if I remember, I'm going to be checking my ankles like every hour. Everything I've read says to contact your doctor if you have swelling of your legs or feet with either medication, but I need to know what and if the drug I am taking is causing my ankles to swell so I need to take the medication, observe and write my findings - a science experiment.
I just find that I want this to be over. I'm tired of trying to figure out the whole puzzle. I know I'm not going to find a cure, but a truce would be real nice about now.
Tuesday, August 18, 2009
I have my computer on the lowest brightness setting I can stand; even to the point where there are times when I want to see a picture or graphic, I actually have to turn up the brightness in order to to see it more clearly. However, I still have problems with some application software, Internet sites and other areas I view on my screen.
Email was the first application I started to notice. The funny thing is that it was a constant flow of emails that came from one person that started keying me into these problems. Her emails always came through with huge lettering in a bold font.
I'm not really the type of person to take offense to someone who uses all caps (not what she was doing), where the typing is seen as yelling, but that is sort of how I felt with these emails no matter what the content was in them. It made me start to look closer at these until I realized what the true problem was. The huge, bold, black letters were too much of a contrast for me against the white background!
I knew some people had this fancy stationary setup as their email background, but that would really not be something I was interested in using. As my first step in trying to resolve this issue, I created my own stationary. I didn't put any designs on it; all I did was create an ivory or off white background. This was working out really well. The only problem was that if I replied to an incoming email, it didn't use my stationary or when I read an email from my inbox, it still had the bright white background and I still had the same issue with the big, bold lettered email on the bright background from the one lady.
Finally, the resolution to this email problem ended up resolving other computer application issues too. I changed the display on my computer. The active window background on my computer is no longer white. It is an ivory or off white color now. It is this way in email, my windows office applications, my Internet windows and really most windows that had this white background.
It was strange going into excel in the beginning and not seeing the white cells, but it is so much easier on my head now. Plus I am the only one who sees the off while color. Anyone I send an email to or a copy of my spreadsheets will see the bright white backgrounds on their side since this is how it displays on my computer only. Even the big, bold lettered email is not as attacking for me any longer.
The other work dilemma I need to sort through is a little trickier than the computer issue. I don't have a solution for it yet and it took me some time to identify the problem.
I have a light accommodation in my office. I would not be able to survive at work without it. The problem? I have found that I avoid going into other offices because of the piercing pain their lights cause me. Sometimes I may stick my head in their office to talk, but I don't like to go in there, sit down or do a conference call with them in their office. However, there are times I will force myself to go into some of these other offices. For example, when my email lady has a conference call, I make sure I go into her office for those calls even though I would prefer to call from my own office. I have found that she is more likely to partner with me when we are face-to-face on the phone rather then in different rooms.
I know it would be unreasonable to have my company do something about the lighting all over the building or even just on my floor so that is something I would never ask for. Most of the conference rooms have a different light fixture than the offices which deflects the light up so these rooms aren't too bad when we have meetings in there. I find that no matter what room I go into, the first thing I do is check out the lighting and pick the darkest area in the room to sit. Does anyone else do that?
I still don't know what to do long term about going into the other offices, but eventually I'll figure out something or become the biggest my office homebody at work.
Saturday, August 15, 2009
One huge change was my son left for school. I've also been going through a medication change, the stresses of a Migraineur in the workplace (that covers a lot of ground), my dog acting up since my son has gone and a small sports foot injury.
I had my blood pressure taken at work this past week right after a very stressful conference call. I try to get it taken every week as they come into our building specifically for this purpose. I originally started getting this done because I have white coat hypertension until I am more comfortable with my doctor and because of the medication changes I go through. This time my BP result had turned my recent theories and thinking around in regard to what I have been feeling.
I have always had textbook BP and don't know anything about hypotension. Yes, hypotension even with all of these changes and stresses. Granted I am taking a Calcium Channel Blocker for my Migraines, but almost every time I get my BP taken, I get a 'Very Good' comment. I am not on a high dose and I took an even higher amount of a Beta Blocker when I used that as a preventative. My BP has never been this low. The other weird thing about it was that it happened all of a sudden and was not a gradual drop in pressure.
My last medication increase was about three weeks ago, was a very superficial increase and added at night to hopefully stop some of the morning Migraines from occurring. It was so small the pharmacy didn't even have this dosage in stock and someone there asked if they even made the medication in this small of a dosage.
Since the medication change, the weather has turned around where it has gotten real hot and muggy. This had made it tough to do anything with the slightest exertion including the outdoor sport I've been doing for years without very easily losing my breath along with quickly getting an accelerated heart rate. I also hurt my foot slightly around the time of the medication change as well.
As you can see, it was simple to mostly convince myself that I was easily out of breath and had an increased heart rate because of the weather mixed with a little bit of exertion. It was also very plausible that my ankle would swell because of the injury I received. Although this wouldn't explain why my other ankle was swollen, I could explain that because I've been stuck behind my desk where I've been bending forward in a funny way too much lately. I was probably just cutting off the circulation where my legs weren't draining well. That must be the reason.
After getting the low BP result, I decided to do a little research and I looked closer into my medication side effects as the swollen ankles and other things explanation had been bothering me. Even though I read through the pamphlets that came with the prescriptions before, I guess I forgot about these side effects or didn't pay much attention this time since it was such a little increase and I never experienced them earlier. Swollen ankles was a listed side effect both on-line and in the pamphlet as well as being out of breath and an increased heart rate. I know I will pay even more attention to the potential side effects in the future. At this point, my ankles are a little less swollen and I'm not exerting myself as much. It could also be that I am finally adjusting to the medication change.
I know one BP result is not enough to have low BP and my medication can be adjusted accordingly. I also know I should have picked up on the side effects and associated them to the medication sooner as opposed to stretching to the other reasons for them.
I want to resolve these Migraines that I probably ignored the medication as the culprit so I could keep taking it to see if it is 'the one'. In the past, I've been taken off of medications too soon only to go back on them and have them help for a long period of time. I guess I didn't want that to happen this time. Knowing me, I also need to know why swollen ankles would be a side effect to watch. I should have really looked into this sooner. At least I'm mostly back on track and will make sure I know my medication's potential side effects in the future. Do you know your potential side effects?
Sunday, August 9, 2009
I dropped my son off at school today. Not only do I have the gamut of emotions, you know I'm so happy for him, it's the best thing for him, it's where he should be to I'm going to miss him, he's not here anymore, my baby has left, but I also had another whole array of triggers. They always all seem to come at the same time. Why is that?? I not only woke up to the rain, but there were other extra stresses which I'll describe in a little while and of course hormones are around when you don't want them either.
The past few days have been building up. Too much time in and out of too many stores. We did do as much on-line shopping as we could, but you can't get everything on the Internet. The worst store this week was the stationary type store where there are fluorescent lights just above eye level on every single shelf.
We ended up going in many more stores that day and the days to follow. It was also the delicate balance of finishing the packing, laundry, making sure everything worked, the last last minute items and of course he's got to go out with his friends. He was the first of his group to leave so I think that added some extra pressures on both of us.
And then came today. We needed to get to the campus at nine in the morning where we had an hour to check him in and unload his stuff. His roommate got there just after we did so they were unpacking and getting setup at the same time. It was fine except for the part where they kept trying out their light by turning it on then off and on then off and then it they would turn the light sideways while it was on. I think you understand my issue with this scenario, but I stayed calm.
We had a small itinerary to follow and a barbecue for lunch with the parents last event being a freshman orientation meeting. It was really nice and just what I needed to get an idea of what he would be doing at this school. We were going to meet with our kids briefly to say our goodbyes and that would be it.
My extra stresses started when my son moved onto his next meeting without saying his goodbye! After looking around, I saw his roommate who said my son disappeared right after their meeting was done. He found him at their next stop and sent him out for me. It helped, but everything had already begun to rise.
Right after I left and was on the highway with no where to turn, I received a phone call from my son. I could tell he was very upset. The school did not have some of the paperwork we sent in. Without it, he would not be able to practice with his team tomorrow morning. I'm stuck in traffic. No where to go. I'm worried about my son although I know we will make everything better for him. He is facing his first night alone with these huge life changes going on and his one constant is threatened to be taken away from him.
Of course you know the familiar pounding by now. I'd done everything I could to keep it to a dull roar all day long. I was trying to get information from my son and from home only to end up going over the wrong bridge. I have no idea how I ended up going over this bridge. Well, yes I do, but that's why I love GPS because it gets me out of the jams I get myself into when I can't listen to her or follow her directions.
Finally, my son gave me the update that he and the school were able to take care of some of the missing information, but I will need to fax the additional materials tomorrow. At least he shouldn't miss any practices. Phew, but too late for the head.
As I asked earlier, why is it these things always happen when you need to be alert and there for someone else? Someday.
Wednesday, August 5, 2009
One morning, I was listening to the radio. The host asked; "If you're about to be executed, what is your final meal"? It doesn't matter why you're about to be executed - you could be completely innocent like the rest of your row-mates. How would you answer this question? What thoughts would you have?
I was also watching my niece in a play. During the play, one of the characters was talking up to 'the light' in the sky. What thoughts go through your mind when you see/hear this?
I have to tell you, I thought of a meal that I haven't had in a long time and used to really enjoy eating. Then quickly dismissed this as my last meal. Why? Of course it contains a huge food trigger of mine which is why I haven't had it for a long time. Then I start to think it's really sad that even as a last meal I couldn't have a food that I really enjoy because my food triggers hit me too fast. Some people can have food triggers that will trigger them up to 48 hours later, but mine hit almost immediately. How would you like to be executed with a roaring Migraine?
Here's my thought about the play. All I could think of is can Migraineurs be actors or actresses if lights are a big trigger for them? I know I would not be able to look up at the spotlight and talk to it. I don't think I would be able to work under the spotlights without having to look up at them. I can't even work under normal office lighting! As it is, I have to work under special light accommodations. I realize there are some stars who do work in the field like Marcia Cross, Elvis and others who deal/dealt with Migraine disease, but it had to be real tough on them with the bright lights at times and I would hope that light is not a big trigger for them.
Even though on the one hand I think it's sad to be thinking along these lines, my true thoughts are that I feel I have come a long way with this disease partially because I am thinking about my triggers. The more I think this way, hopefully, the more Migraines I will be able to avoid.
I may not ever be on death row or in a play with spotlights, but I have to eat everyday and I'm in rooms with lights turned on in them everyday too. If I don't eat, I would most likely get a Migraine as not eating is a trigger. If I don't turn a light on, I may trip and get hurt especially considering how clumsy I am when I can see.
Although I may never be an actress, I have given presentations where I have either a light or a projector shining toward me. I think the difference is that I don't necessarily have a certain spot I have to stand and converse with somebody and I certainly don't have to stare or talk at the light.
By having these thoughts in the front of my mind, I can make more informed decisions all of the time based on everything going on around me and not just use the ostrich approach which can be more comfortable. Knowledge truly is power.
Saturday, August 1, 2009
Megan started the informational Teleconferences earlier this year and has already hosted quite a few of these interactive calls. Have you registered for or attended any sessions? She has had some of the best guests who had plenty of great information to share. The format has a nice flow. She spends a little more then half the time asking questions of the guest and then opens up the floor so we can ask questions too! Yes, you heard me right, we can ask questions of these fantastic guests!
Who have been some of Megan's visitors? The guests and topics have included: Teri Roberts on Taking Charge of Our Migraine Care; Michael John Coleman on Helping Migraineurs Fight for Their Rights; Dr Roger Cady on Emotional Health; Dr William Young on Preventing and Treating Daily Head Pain and Intractable Migraine; and Dr Robert Cowan on What is Migraine For?.
The next Teleconference guest should be Professor Joanna Kempner of the Rutgers University Sociology department whose field of study is the sociology of disease and she is writing a book on Migraine and society. I can't wait to find out the official topic of discussion! These Teleconferences are the last Sunday of the month starting at 4:00 pm eastern time (that's 1:00 pm pacific time) and last for about an hour.
If you register for the Teleconference, not only will you find out about the latest topic after it is finalized and be able to ask questions yourself on the call, but you can listen to the past Teleconference recordings, all of which are offered free of charge. For more information and to register, visit Megan's site by clicking HERE. Unfortunately, I could not make one of the Teleconferences due to another obligation with my son, but I was able to make up what I missed by listening to the recorded session after it was posted. I might not have been able to ask any questions myself, but at least I was able to listen to the conversation which ended up being very pertinent to me.
The Teleconferences talk about many different issues as you can see by the variety of topics and guests. There are broad issues and more individualized areas brought up throughout the different Teleconferences. It's always interesting to hear the different theories on the similar subject matters by the various experts.
It was also fascinating to hear how people, doctors and legislature have evolved over the years from giving little or no credence to the disease to what we have today. We still have a way to go, which is why it is so important for us to become as educated and as involved as we can. The writing campaigns sponsored by the Alliance for Headache Disorders Advocacy makes it very easy for us to write to our Congresspeople when there is an active drive going on. I know it would be hard for me to write them if it wasn't made so easy by the AHDA.
I'm always trying to find the best way to manage my disease. With the assortment of guests, I'm given different ideas on what I can try that might work for me. Some Teleconferences talked about managing Migraines on a more individual level; how you can manage your Migraines and how other Migraineurs have managed their own Migraines. With Megan being a Migraine Management Coach, she has even interjected some of the tips she gives to the clients she works with.
Our nervous systems are more aware of the environment around us; they are more sensitive to it. I could never understand why a loud TV was so bothersome to me until it clicked during one of the Teleconferences. They were talking about loud, repetitive noises and how jumpy we can be even when we know it is coming because our active brains are slower to turn off. One of the callers commented on how she didn't feel as crazy now after she heard this. It's always nice not to feel like you are alone.
One helpful hint given was that we need to start with smaller goals in reference to our Migraines, kind of like if we needed to lose weight. Let's say you have to lose 75 pounds, it could be too overwhelming to look at that number, but if you break it down into smaller segments like X pounds a week, it's much more manageable. You can follow the same premise with your Migraines. As an example, if you want to do more exercises to help your Migraines, you might start with small walks and slowly build yourself up to longer walks as you can manage through it.
There is so much more information given out during these Teleconference than the few tidbits I have mentioned here. One of these doctors even gave his opinion on the current healthcare reform while another doctor mentioned he still learns from his patients everyday. Many show their sense of humor too. One doctor recounted a call he received from a patient that went from very frequent Migraines to very few. She made a huge environmental change when she divorced her husband. I don't think that's recommended across the board except for some it may not be the husband, but a different toxic relationship or perhaps other environmental changes like a job or something else along those lines. Before one of the calls, the doctor logged in early and we were able to have a nice little chat with him until the Teleconference started. He actually asked us questions about our Migraines.
If you want to gather up some additional tools for your Migraine chest and you haven't registered yet, I would ask you; what are you waiting for? Register, come armed with questions while you get ready to participate and prepare to learn something new. I hope I'll see you on the up and coming Teleconferences. Not only do we learn from the interview, but we learn from the questions we ask too.