10 replies to this topic

[DeathRabbit]

I first started having issues in High School. I noticed my memory was loosing its sharpness and i was requiring 8 to 9 hours of sleep to feel fully rested instead of 6 to 7. Then I went off to college and like everyone else in college, had a terrible sleep schedule so stuff got worse. I eventually started having frequent migraines, transient paresthesias, and worse memory issues. At this point, my fatigue wasn't that great, so I thought it could be MS, since it runs in the family. I got an MRI, but nothing weird showed up, and I had my blood tested for everything from diabetes to hypothyroidism. Since none of the blood results showed anything abnormal, they said it was because my sleep schedule was poor and because I was fat and lazy and just gave me Paroxetine for depression/anxiety. Meanwhile, I continued to deteriorate, getting sleepier, developing hypnogogic hallucinations,, but even then still managed to graduate Magna Cum Laude with a degree in Computer Engineering.

Upon, graduation, my fatigue started to become unmanageable, and my work begin to suffer immensely from it. Bone-crushing sleepiness, poor memory, confusion, delirium, headaches, etc became daily friends. As you can probably imagine, programming became hard once these symptoms hit with full force. So, at this point I decided I would give the doctor's no more excuses to blame my condition on me. I started getting regular, steady sleep. Still no improvement. I went back to the doctor then and had some more blood-work done and it was discovered that my testosterone level was incredibly low. So, they put me on T shots, which showed a slight improvement, but not a lot. So, I tackled the next issue. I started getting regular exercise (despite this being difficult due to fatigue), and dropped about 85 lbs of weight. Still, no improvement, in fact, my symptoms continued to get worse.

Finally, last fall, I got my primary physician to recommend me to a sleep doctor. I had a a sleep-study and MSLT and I fell asleep for all 5 naps, even though I only remember going to sleep during one of them, and twice fell directly into REM sleep. The doctor told me I had narcolepsy and started me on provigil. That made me feel like I was going insane, so I had to quit using it. Then he started me on adderall, which would help with the sleepiness, but still would not do anything for my mental skills, which to me, felt like they were beginning to get in the realm of a special needs 3 yr old. I was on adderall for a while, but it continued to struggle daily, so I went back and begged the guy to put me on Xyrem or some other sleep-aid. However, he said it was dangerous and would be counterproductive and refused to do it. He gave me some nuvigil to go along with the adderall. Next, I got him to recommend me to a psychiatrist for managing my meds. The shrink took me off paroxetine and put me on fluoxetine and wellbutrin. For the first week I felt nothing, but then I started to notice a marginal improvement. Additionally, the headaches went away, thank God. However, it was still nowhere near where I needed to be. Also, I had to quit the nuvigil, because I would become intensely moody and irritable if I took it with the wellbutrin. Furthermore, I think the effectiveness of the wellbutrin is pared by the fact that it causes me to stay up later and wake up earlier.

That brings us to the present day. I am thinking I should go back to the shrink and ask him for Xyrem again and perhaps Wellbutrin SR instead of the normal wellbutrin pill. I feel like the stimulants are fine and all, but they are just treating the symptoms. The cause is a lack of recuperative sleep and I'm seeing several anecdotes saying that Xyrem helps with sleep quality immensely. Does anyone have any thoughts on this? Sorry if my writing is scatterbrained, I have good days and bad days, and this would be one of the bad ones.

[Lorz]

I'm having a bad day today too, but hopefully I can write out my thoughts....

I think you should try Xyrem. You might need to stop any meds that you may be taking that make you sleepy, but it is worth it. I have been on it for almost 3 months now, and my fibromyalgia is better and I know I am getting deep sleep.

I am having issues with it, however, but I am going to make it work - it's my last resort. Nuvigil stopped me from being able to orgasm and other stimulants don't work well enough.

My main problem with Xyrem is that it causes my anxiety to come back. I had been taking Cymbalta 60mg and it was controlled, but now I've had to increase it to 120mg. Also, at the higher dose, I might have apnea. I'm going to have another PSG while at the high dose and they might give me a CPAP mask.

I feel safe when I take it - I can wake up and use the bathroom while it is still effective and not fall or trip. I don't oversleep or feel groggy when I wake up. Sometimes I wake up too early, but I can get up and start my day since I actually have rested.

Plenty of people report that they have no problems with it. The Xyrem success program nurses are amazing, too, and they will help you out with everything.

[DeathRabbit]

Thanks for your opinion. Hmm, Nuvigil never did that to me, but it did make me anxious, especially when combined with Wellbutrin. I did however, have that issue with Paroxetine in higher doeses. I think the fluoxetine does it as well, but to a much lesser extent. In general, it seems like anything remotely messing with brain chemistry tanks sexual performance. Being sleepy all the time I'm sure doesn't help us narcs out either. Is Xyrem less affective than straight GHB?

[Lorz]

I don't really know anything about GHB. Is that something that is prescribed or is it illegally manufactured? Are there other meds out there like Xyrem?

[sleepywriter]

I also work in IT, though I am not a programmer. I do network administration. Part of the reason I fought to get help was that I felt my job was seriously in jeopardy. It's hard to feel confident managing very expensive equipment and writing access lists when words become jumbled and you can't seem to put two coherent thoughts together. Troublehooting? Forget it.

Xyrem IS GHB basically. Why, specifically, did your doctor think Xyrem would be dangerous? Does it interact with another med you're taking?

If you're not happy with your treament, don't be afraid to request your records and take them to another specialist, preferably a neuroligist who specializes in sleep medicine.

[Delta]

I had a similar experience with Adderall and, short version, it delayed proper treatment for a year and a half. My current doc took me off all stimulants and immediately started me on Xyrem. A little later he added Nuvigil (not a traditional stimulant like Adderall or Ritalin, which I don't tolerate well). I now have been able to go back to work. My experience has taught me that very few doctors know how to properly treat pwn, and very few know how to properly administer Xyrem. Unless your psychiatrist is an expert in sleep medicine and already has experience with treating patients with Xyrem, I suggest that s/he is not your best choice of specialists. For me, the best doctor turned out to be a neurologist specializing in sleep medicine. He has extensive experience with Xyrem--he participated in the clinical trials, and has 300 patients on Xyrem (this is in Houston). The first neurologist I saw had never treated a PWN before; and a psychiatrist inadvertently "tortured" me for a year with improper treatments (including ECT).

Xyrem is perfectly safe (I weigh 98 lbs and take 9 gms a night); and it is the only medicine that allows PWN to get consolidated deep sleep, without which no amount of stimulant will truly keep PWN fully awake. Just my opinion…the stimulants make you THINK you're awake, since you are up and moving around with open eyes, so you might not realize that you are going in and out of micro-sleeps ("mental skills…of a special needs 3 year old" is exactly how I felt). BTW, my doc switched me from Wellbutrin to Efexor because, he said, Wellbutrin does nothing to prevent cataplexy.

[LauraL]

Another vote here for seeing a sleep neurologist. I did talk to my psychiatrist after my sleep test, and he didn't really have any answers for me. (To his credit, however, he was very upfront about his lack of experience with the kinds of sleep issues I was having, and did suggest I see a sleep neurologist.) I've had a great experience with my neurologist. I feel really confident in her diagnosis and prescription of treatment.

I've been taking welbutrin and celexa for several years to treat recurring major depression. I also noticed irritability/anxiety when I started nuvigil, and when I increased the dose, but now that it's been a few weeks, it's starting to subside. I'm confident it's going to get to a point where it's manageable. Obviously that won't be the same for everyone, but just wanted to share my experience.

Good luck!

[Lorz]

Just my opinion…the stimulants make you THINK you're awake, since you are up and moving around with open eyes, so you might not realize that you are going in and out of micro-sleeps ("mental skills…of a special needs 3 year old" is exactly how I felt). BTW, my doc switched me from Wellbutrin to Efexor because, he said, Wellbutrin does nothing to prevent cataplexy.

Hi Delta,
I would like to be certain that I understand you correctly here. Do these stimulants make the brain fog worse for PWN? I'm currently seeing a pulmonary specialist and this thread is making me strongly consider a second opinion from a neurologist.

I cant be sure what is wrong, maybe its the concerta, I am having serious cognitive issues. Its hard to have normal conversations and I cant remember what I'm doing from one minute to the next, never find the right word, etc. On top having a sinus infection.

[Delta]

Hi Delta,
I would like to be certain that I understand you correctly here. Do these stimulants make the brain fog worse for PWN? I'm currently seeing a pulmonary specialist and this thread is making me strongly consider a second opinion from a neurologist.

I cant be sure what is wrong, maybe its the concerta, I am having serious cognitive issues. Its hard to have normal conversations and I cant remember what I'm doing from one minute to the next, never find the right word, etc. On top having a sinus infection.

Lorz,

That is just my experience; I don't know if the stimulants do that to everyone, or just to some people. This is how I came to this conclusion: When I first started taking Xyrem, I was already taking Ritilan and several other meds the other doc had me on. My new doc took me off all of them but 2, one of which was Ritalin (he wanted me off of Ritalin too, but said he didn't want to make too many changes at once). After a few days on Xyrem, and while still on Ritalin, I was better--felt awake and energetic, but there was very little change in my speed and clarity of thought. It took me 5 times as long to figure out how to do things I shouldn't have had to think about (ever have that dream in which you are trying to dial a phone number, but it never works because you keep punching the wrong numbers and you can't figure out how to do it correctly? It felt a lot like that). About that time, the Ritalin also began making me feel jittery, so my doc allowed me to drop the afternoon dose. Two or three days later, I decided to drop the first dose too because the "wear off" was agonizing. That first day of no Ritalin, I was extremely sleepy of course, but my mind was CLEAR, I could think at normal speed, and I didn't have to think for 5 min before I could remember my computer password--it was automatic again. Granted, I kept falling asleep that day, but I didn't care because I no longer felt like a Cabbage Patch Doll.

I now take Nuvigil (just increased to 250mg). I don't feel energetic and lively like I did on the Ritalin, but I don't care. I'd rather be aware of my level of sleepiness than a stimulate- induced somnambulist zombie. I experienced all the things you mention. It was so frustrating--it took me so long to get a sentence out that family members tried to complete my sentences for me, and when I'd shake my head no, they would try again. Of course, I'd lost track of what I was going to say as soon as they began speaking, so when I could finally get out the words, "stop doing that! You make me lose my train of thought!," I'm so upset that I'm shouting and shaking all over. Seriously, I hope this helps.

[SuperJames]

...I'm currently seeing a pulmonary specialist and this thread is making me strongly consider a second opinion from a neurologist...

Based on my own (quite limited) experience, I second that strong consideration of yours! I had to see a pulmonary specialist at first in order to have the requisite sleep tests conducted. In the following visits, it was all "sleep apnea this" and "CPAP machine that" - they were stuck on one track, and that track didn't include any possibility of narcolepsy. When I came right out and asked^* "Would sleep apnea explain my ~ 10 minute REM latency?" all I got back was "The doctor wants to try this course of treatment first."

After pushing my primary physician to refer me to a neurologist, said neurologist reviewed the results of my studies and told me outright, "You have narcolepsy." At last, I knew (and knowing is half the battle, right).

^*Don't ask me how I pronounced the "~" symbol...

[DeathRabbit]

I know it's really really delayed for a response, but I signed up here, made a few posts, then promptly forgot the forum existed until I ran across it again in a Google search today. I did end up switching sleep docs. I am with a doctor now that has a background in psychiatry. He is wanting to start me on Xyrem, but the old doctor is dragging his heels in getting the sleep study to the new one, so I haven't been back to the new doc for over a month. This is getting irritating. I am generally doing better now, than I was earlier in the year when I started this thread. Partly I think because I finally kicked the Paroxetine. I'm seeing reports too, that SSRI discontinuation syndrome can created a narcoleptic effect. I'm thinking SSRIs might have caused my narcolepsy. I was a genius until I started them, then about a year after I began taking them (originally Zoloft) I started experiencing that dreaded nominal aphasia that so many PWN complain about. Now, on bad days, I am completely useless. PWN is such an appropriate term, because I feel like narcolepsy has pwned me for sure! >.< Anyway, I'll try to make a conscious effort to stay active on this forum, if the derp (my name for the brain fog) doesn't erase my knowledge of this place again from my working memory.


Addendum: I am starting to think about trying acupuncture too. I don't believe all that hype about Chakra and Cosmic Fusion, but I think the release of noradrenaline could be helpful. I got the idea because one of my neighbors has migraines and chronic malaise due to being unfit and the acupuncture helped her get active and lose weight, while minimizing the number of migraines she gets. Hell, it could all be a placebo effect for all I know. As long as it works, don't much care about how it works, haha.