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Re: Sleeping my life away - Bob

Posted by winter on June 20, 2002, at 15:17:09

In reply to Re: Sleeping my life away - Bob » Bekka H., posted by Bob on April 7, 2002, at 17:30:03

Wow... you are my people!!! First off Phoebe do reserch or this very rare sleeping disorder, Kleine-Levine syndrome. My doctor thinks there is a possibility I may have a varition of it or a mild form of it but beacause it is so rare we can't say. This is how rare it is, I live in LA and there is a doctor here a sleep specialist and he has the largest case study of this disorder in the world; 3. My spelling may not be exact on that.

Second of all to all of you for the past three years I have been going through the same ordeal sleeping 12-14 hours on a really good day, 14-18 other wise. Rarely up in the 20's. I have seen psychologists, psychiatrists, psycho analyists, had sleep studies, you name it. Everything tested. Found out one thing my hormone levels were abnormal. My estrogen had dropped below 20 (normal is in the 100's). It was so low the could'nt measure it. I did HRT. I did not improve my sleeping enough however. Since I did that I haven't slept 18+ hours. No more almost daily migraines.

I have been on almost every medication you all have listed, paxil, wellbutrin, effexor(350mg), lamictil, reboxitine, topamax(200mg), provigil(150mg)..that is all I can remember. Nothing worked (don't even bother with provigil it will make you miserable. When I did wake up on it it kept me in a non asleep state, where I wasn't physically asleep, but I sure as hell felt like I was)

When I stopped taking the Effexor not only was that more painful than quitting smoking.(The withdrawl is said to be one of the worst prescription medications to get off of, so bad that some people can never get off of it because the withdrawl is too damaging to their system.)I stopped the effexor for two reasons my blood pressure had gotten too high for my taste (133/82 normally I am 112/72 or lower)and secondly my psychiatrist at the time wanted nme to try either Parnate or Nardil. Good ole' MAOI's....

Anyway when I finally got off of the effexor I felt better slight headache improvement, sleeping improvement for about a week. Most important of all I realised I was not all that depressed. Off of the effexor I did not feel any worse any more depressed as I had expected to. I remembered how I felt before I took my first med paxil, I was severely depressed then, and I wasn't feeling that way after the effexor withdrawal. However My psychiatrist was convinced that my hypersomnia was realted to depression. "I don't know why you sleep so much, hypersomnia is a symptom of depression, so that must be it. We will treat it as depression!"

I was uncomfortable about taking a MAOI, so I got a second opinion and by this time I was convince that I had some anxiety that came and went, an anger problem, and I was depressed about sleeping too much. Depressed not even being the best word; upset, disapointed, frustrated, at a loss. That was not my general mood I only felt that about the fact that I slept so much and there fore I couldn't lead the life I wanted to. I wasn't a depressed person therefore I was sleeping to much. I wasn't depressed therefore I has anxiety. It was unrealted and the other way around.

I saw a psycho-pharmaceutacologist he agreed with me 100%. Now I am taking Dexedrine. I am still trying to work out the dosage. So far it has helped more than anything. I am so thankful I could cry. I have been up since nine this morning. A miracle and I will stay up and not fall asleep, and have a good amount of energy like a normal healthy person does until an apropriate time at night. I don't think I am quite to sleeping on 7-8 but 9.5-10 is really good considering I just started the meds about a week ago. My body hates me! Its saying 'Wheres all my sleep I am not used to this!'

However I know taking anti-seizures, anti-depressants, all those things aren't going to work.

So I think maybe some of you should really carefully objectivly look at your selves and see if you really are that depressed. Doctors assume everything is depression, especially if they cant figure it out. Do you have hope? Do you have goals? Do you want to do things? Do you wish you go out and have a life instead of sleeping all the time? Some depressed people don't especially those that would be inclined to sleep alot. Talk about it with a therapist who isn't going to say " Oh but you are depressed this is why you have these problems..." Maybe you are, but you might not be and you might be wasting time and money thinking you are.

I only say all this not as an opinion of any of you but so that maybe someone can learn from my experience.

Sorry about the long message, Winter


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