Is There Anyone Out There Like Me?

[AbbyHope]

I've read a lot on the message boards here but haven't posted anything until now. I feel like my life is at a total standstill and at this point I would just like to talk to someone else like me. I believe I have DSPS, but there are some other factors that make my situation more complicated.

I have always had a terrible time falling asleep before 1 or 2 AM (even as an infant), and I have had OCD for as long as I can remember. By the time I was 10 it had progressed to the point where I was almost non-functional, so my parents took me to a psychiatrist. After they ruled out any physical causes (blood tests for thyroid function, MRIs for brain tumors, etc.) they tried talk therapy, then Paxil, then Zoloft. Nothing worked. Finally they put me on Luvox (fluvoxamine), and after a few months I noticed a huge difference. They also put me on Trazodone to help me sleep.

Unfortunately, getting on Luvox was a lot easier than getting off of it. I'm 25 now and although I have been free of OCD symptoms for almost 2 years, I still have to take Luvox every day because I get physically ill if I don't. I've been trying since high school to get off of it and over the past year or so I got down to 100/mg a day (down from 300/mg a day) but every time my doctors try to reduce the dose beyond that the withdrawal symptoms are horrendous, my OCD returns, and I have to increase the dose again.

My sleep has never been what I would call "fulfilling," even though I've been on Trazodone this whole time. It is the only medication that actually makes me fall asleep. (They've tried Klonopin, Ativan, Lunesta, Ambien, and opiates. For every single one, I either don't fall asleep at all or sleep for 2-3 hours then wake up still feeling exhausted.) I hate taking it because of the night sweats it gives me and how exhausted it makes me feel during the day (they've tried Provigil and Adderall for the daytime exhaustion but Provigil gave me migraines and Adderall makes me feel like garbage when it wears off).

I can't take a lot of other medications because they have dangerous interactions with Luvox - Rozerem is one I've always liked to try but haven't been able to. I have asked several times to have a sleep study done but no one will perform one on me while I'm still taking Luvox. (Yes, I have NEVER had a sleep study done. Infuriating!!)

I've lost so many jobs and relationships because I can't wake up in the morning that I'm beginning to lose count. I had a job writing for a travel agency out of college, but even when I would set 3 or 4 alarms I would sleep through them all. I almost got fired when I slept in until 2pm one day (I was supposed to be there are 9am) and had to take Adderall to wake up every day after that or else I simply couldn't function. I lost my job in the recession and have been unemployed for almost two years now because I know if I get another job I'll have to take Adderall again to keep it, and I just can't do that anymore. The side effects are terrible (bruxism, back and neck pain, irritability) and I can't describe how awful I feel when it starts to wear off.

I don't know what to do anymore. If one more person accuses me of being lazy or not trying hard enough to change this or says that this is all in my head I will just lose it. I feel like I keep hitting dead ends because I need to be on Luvox to help control my OCD, but I can't try certain medications or get certain tests done that may help me because of the Luvox. Doctors don't listen to me, teachers and bosses don't believe me, and my friends don't understand. If anybody is experiencing anything like this or has an idea about what I can do, please tell me.

[wesfromGa]

*I recommend seeing a sleep specialist who is a neurologist rather than a pulmonologist, if you have not already. They apparently come at things in different ways.

*Some doctors are willing to do sleep studies when a patient is taking medications when there is a good reason to do so. I believe you should be evaluated for sleep apnea, restless legs, and other sleep disorders an overnight sleep study might pick up. Of course, that is just a layperson's opinion - but I offer it anyway in the hope that you'll be able to convince some wise doctor that your sleep issues were not properly evaluated before you began the psychiatric medications, which apparently help with pretty severe OCD.

*Make sure any psychiatrist you see is well versed in sleep disorders. In fact, get a sleep doctor to recommend a psychiatrist, rather than the other way around. If you aren't happy with where things stand with your current doctors, go to someone new.