Sorry I was out for a little while, and when I came back, there were some administrative changes to the account that I had to get used to using. I think I had told the story right up to the point where I was diagnosed with IH. I will try to address the topic of medications today.

Some people with IH are able to lead productive lives if they find a medication that works for them. Others do not find a medication that works and the disease becomes disabling. This is hard for the friends and family members of IH sufferers to understand because they don't understand how strong the sleepiness is. They try to compare their own experiences with that of the person who is ill. If you have IH, the sleepiness is very strong. Medical professionals reference sleep drunkenness as a symptom of IH, and I suffer the most from this aspect of the illness. No amount of coffee (yes, I have an ulcer, too) or morning exercise is enough to pull myself out of this drunken feeling, and sleeping longer does not rid me of the confusion and stiff muscles. What makes it hard for others to understand is that there are times when you don't feel quite so bad. As a member of a sleep support group, I have heard many horror stories...I have to say, please, please don't interpret this as "the illness is not real." It is painful to have a good morning, for once, and have someone else ruin it by suggesting that you can choose to not have the disease. If the patient was diagnosed with an MSLT, they could not have "faked" their sleep patterns because you can't fake something when you are asleep.

On to the side effects....Some of the common problems with the stimulants that are prescribed for IH are that they are ineffective, they are too effective, they change your personality, they cause additional unhealthy sleep hygiene behaviors, they decrease concentration, and they promote anxiety. Currently, there are four medications that are most commonly prescribed for IH (although there may be other options, and this list should not at all be interpreted to exclude any possible options). These are Ritalin, Provigil, Adderall, and Dexedrine. I have used Dexedrine, Provigil and Adderall from this list, but before I was diagnosed, I was prescribed other stimulants as well.

I will relate my experience with these medications, but I would like to say that people experience these meds differently. Some people do very well with a medication, and others have a horrible experience with it. This may be a difference in body chemistry, it may be a difference in which type of IH the person has... No-one really knows. What I am trying to say is that my experiences are just that---my experiences. If you have IH, you should try everything you need to try until you find something that works.

Dexedrine was not effective for me until the dose was raised to a pretty high level. At that level I felt pretty good, but my blood pressure was too high to consider this a long term remedy. I had a horrible experience with Provigil as it started to become less effective for me over time. It worked well in the beginning, but it made me snappy and irritable (it also made my hair fall out, but not to the point that I experienced any baldness...just mass thinning). I tried to get used to this feeling so that I could acclimate to the medication, but it continued to be less and less effective as time went by. After six months, it provided little relief and a lot of irritability. It had really changed my personality in such a way that I did not enjoy my life, and I responded to others in a flat and disinterested manner. I lost the ability to multitask, and I became obsessive about the things that I chose to attend to. It was, however, the most effective medication in terms of addressing the sleep drunkenness, and I miss that feeling of being ready to start the day. I am currently taking Adderall, and I am much happier. I do still suffer from sleep drunkenness quite a bit, but once the medication does take effect, I begin to feel much better. I am experiencing some hair loss, but not as much as I did before. I worry that this medication is not strong enough to help me to get to work on time when I go back. I will likely request an increase in the morning dose, and a decrease in the afternoon dose when I see the doctor next time, so that I am ready to go back to work in the fall.

I have come to understand that I will find some relief with medication, some with lifestyle modifications, and some through my support group. There is no magic pill that will make me fell normal. I can only hope to feel better than I do without medication. Understanding this was a big step for me, and it required a sort of resignation (which is so very, very unlike me---Never say die). However, I have been a lot less frustrated with the medications as I accepted that it would not be magically better one day. It sounds sad as I am typing it out, but I really am finding that my life is pretty good in spite of the illness. It requires careful management, but it can get better----not normal, but better.