Sunday, November 29, 2009

My Grown Up Migraine Helper

My boys know all about my Migraines and I've explained some of the basics, but I'm not really one to dwell on the details behind my Migraines or how I take care of them. I should have talked to them more about them. I think part of this reason is because I wasn't diagnosed until three years ago which was way beyond their screaming days. Sure they know it's a genetic neurological disease and some of the symptoms of it, but I usually handle things myself.

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

Survived Thanksgiving!

If you've been around, you know I have a large family. Thanksgiving is a huge holiday in our family which usually includes some stragglers who have no other place to go. There aren't as many people as there were at our family reunion or another huge family function we had this year, but then those events are held outside. Thanksgiving was actually a little smaller this year than in previous years, plus we lost a very close family member which brought about a change in location for our dinner. We ended up with thirty-six people at our cozy family dinner which included a surprise cousin from as far away as Texas who was working in the area.

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

Could Not Miss Work - My Day

Do you ever wake up and just know it's going to be one of those bad days? There were no real symptoms yet, but the 'normal' stuff just seem a little different, a little off. This is how I felt on a big morning this week when I absolutely could not miss work or take any big chances with medications.

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

Where to Sit - Isolated or In the Thick?

I've got a new string yanking at my heart and of course Migraine disease is at one end of it tugging away. I know what I need to do and will, but my kids have always been my weakness - no matter how old they get. Plus my kids seem to extend out to their friends and teammates.

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

Topamax, Topiramate or ?

I've always mostly liked Topamax and felt like it was helping me. It went generic this past year which doesn't sound like much, but I've finally come to the conclusion that I don't think the generic's the same as the real deal.

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!