Saturday, December 26, 2009

The Diary Continues

My son came home for his winter's break from college. Prior to him coming home, he only had about two weeks to fill out his headache diary.

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

Facebook Group for Healthcare

There is a facebook group that is trying to collect members to help show Congress our concern about health care and changes that are needed. This facebook group is not to support any one individual bill or proposal. It is meant so we can tell Congress to get it together and get the healthcare reform we need and deserve; to stop being politicians and start being leaders. This group is not out to get into any political discussions, but wants to stick to a basic message.

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

Long Term Med Change

I had a good visit with my doctor this week. However, the day of my appointment started off with many wake ups during the night due to the storms; you name it, we had it. There was snowing, sleeting and raining throughout the night and into the day. Luckily I left plenty early for my visit as it took much longer to get to her office then it should have because of this weather, getting stuck behind eight snow plows strung across the major highway and much flooding.

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

Support Your Headache Specialists - Send Email Now

In order to give an incentive and encourage doctors to enter and stay in primary care practice, the Senate Health Care Reform Bill has a provision in it to provide bonus Medicare payments to doctors from certain primary care specialties. I think this is a wonderful idea except that it currently leaves out doctors who specialize in headaches or provide the primary care for patients with headache disorders of which Neurologists make up a very large percent.

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

Newish Migraineur Vacation

My sister Pam left on a family vacation last weekend. They went to Florida with their four children. She has been texting me almost everyday.

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...

First Year Headaches

I am starting to get a little concerned. I just found out that my college freshman son has been missing some classes because he has felt nauseous, sick to his stomach and had headaches. You know what is racing through my mind. He says he has just been sick and is getting better. I know he has had a cold, but I believe this was going on a little longer and a little more sporadic than that.

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.