19 replies to this topic

[Neuronic]

I have narcolepsy and my new treatment with Xyrem (GHB), provigil, and low doses of Ritalin isn't going all that well. I should likely give Xyrem more time since it's only been 2 months but so far it makes me sleepier than normal and definitely in a worse mood during the day.
I first started modafinil last november, the first month it was awesome and about a month later I started taking deprenyl trying to help my concentration abilities. For about 4 months I took both and modafinil never lost it's effects. I stopped taking it 1 month before meeting with my sleep doctor and having the sleep study. To make the story short, modafinil slowly became less effective in that month and now barely works.

I didn't realize it could have been deprenyl keeping modafinil effective but it makes sense now.
After a month of starting my new treatment I have been getting behind at work and feel like crap. So I decided to tell my Dr about taking deprenyl and also piracetam, since it helps sleepiness too.
BIG MISTAKE! The Dr looked them up in his phone and immediately started rattling off some of the worse possible side effects and looking at me like I'm stupid and that it worries him I was taking stuff on my own.
I told him how carefully and cautiously I started taking these and that I hadn't taken it in months. I had just wanted to tell him about it to see what he thought. He repeated about 10 times ordering me to not take anything without telling him, like I am some little kid.
I figured that openly admitting what I took would give me some respect on the subject of treatment. After all, I should know best how I feel. But apparently since I have no degree I know nothing.

What I DO know is that I have significantly gone downhill in the last 4 months and am tired of feeling like I am in another world. I am tempted to start taking deprenyl again for a few weeks to see if indeed it has a synergistic effect with modafinil. My concentration/memory were still bad with these two, but at least I felt much more awake and like doing work!
Exercise makes a huge difference but at the end of the work day I just want to sleep, which wasn't the case a few months ago.

Any thoughts on the subject? Should I defy my Dr who doesn't listen to what I say?
Thanks.

Edited by Neuronic, 12 September 2010 - 08:12 PM.

[Animal]

The only way I've achieved almost complete remission from my dysthymia and anhedonia while also effectively managing my chronic fatigue syndrome was basically by completely ignoring the bollocks coming out of my psychiatrist and chronic fatigue consultants mouth. I effectively coerced them into prescribing the pharmaceuticals I had ascertained would help me. That's all they are to me, a tool to acquire the medication I deem useful for free. Actually it's not fair to say that about my psychiatrist, since she was excellent to discuss my issues with.

I can't tell you exactly how to do this since it's something that needs to be tailored to the individual doctor. But one effective way is by appealing to their vanity and making them believe it is their idea. It's also important to do your research, since I established early on in my dealings with these professionals that I had superior knowledge to them when it came to not only my disorders, but also the potential medicaments which could attenuate them. This resulted in me having a great deal of respect from the two consultants, such that they took anything I suggested very seriously. Of course it helped immensely that I have a PhD in molecular and genomic biology, so while I'm not an M.D I do have a comparable and in many ways, superior, education to them. My monthly appointments were more neurochemical/psychological debates then the typical 'patient deferring to doctor' dynamic that most people will experience.

[Spectre]

Most doctors suffer from God Complex, and believe the knowledge they possess is somehow superior to anything a patient could ever have. I personally dislike most pharmaceutical drugs and the risks generally outweigh any potential positive effects for many drugs. Have you ever researched ALCAR (acetyl l-carnitine) and Aniractam? I take those and have gotten some very positive results from their use.

What side effects have the medications you've been taken given to you?

[KimberCT]

Same experience here.  It wasn't until I took charge of my health that I experienced any improvement.  As Animal said, doctor's have become mere tools to acquire medication and tests that are too difficult for me to obtain on my own.  

[Introspecta]

Doctors come off as idiots. I take buspar for social anxiety and it seemed like it worked pretty good. I used to blush a real lot and it seemed to help with it. Could be placebo but whatever it works for me. My doctor has been trying to get me to either get off it and try something else or start adding other drugs too it. He said. " I think you can do better than the busper". Me said but it seems to be working. Every visit he tries to get me on more drugs. I have no respect for doctors. Yes they have the degree but most of them dont seem to do much research at all into what they are prescribing. This is what i've noticed in my experience. It may not hold true in all doctors. Piracetam has helped me big time with social problems. I say do you research and be thorough and find out what works for you. Also get another doctor if this one doesn't seem to help you in the way you want.

[Neuronic]

Animal,
that's funny about calling them tools. Ironically I did convince him to give me a prescription for methylphenidate by bringing up the nootropics. I had already asked him twice from 2 previous visits and he didn't want to, just increased provigil by a measly 50mg per day. I am his first narcolepsy case, and from what I'm told the 1st known in this area. So he has only treated apnea patients, therefore no experience in my disorder.
I need to be more assertive, I try to tell him what I know but he likes to interrupt me and not listen. I think the biggest disadvantage is aphasia, I sound stupid if I can't think of the words I want to say.

Spectre,
I agree with some doctors having a God complex, even though he never heard of piracetam and had to look both it and deprenyl up on his little phone drug app. I took acetyl l-carnitine a while back but the only other racetam I've ever taken was oxiracetam. Both I only took for a short period and I couldn't tell you if it was beneficial.
I took piracetam for over a year and never realized how much it helped until after I stopped.

Xyrem side effects after it's worn off for me are: Bad mood (anger, quick to snap), feeling depressed, hard to awaken and staying half asleep all day (better with new 3mg dose).
However when it's working I feel quite the opposite, I feel very elated and euphoric until the sleepiness hits. Nausea if I wait too long to go to sleep when I take the 3mg dose.
Provigil/Modafinil has never given me any side effects besides a curbed appetite with a 100-200mg dose. I get the muchies and an elevated heart rate if I take more than 300mg within too short a time. Ex. I took 400mg in the morning and my pulse was 90-100bpm when sitting quietly, big deal.
Methylphenidate is what I just started, it increases mood and alertness but even a 5mg dose shoots my pulse up to 90-100 sitting down and I am getting stomach pains. I don't know if brand name Ritalin is better or if I just don't tolerate this stuff well.

KimberCT,
thanks for the post, I think I should at least try deprenyl again and see if it restores modafinil. My family doctor was willing to write a script for Nuvigil before I even was tested for a sleep disorder, so I know I could fall back on him. He was extremely easy to work with, too bad he's not a sleep doc.

[medievil]

Haha, i agree completely with all the rest here, just do your research and use the docs as tools to get the meds you need, they usually only talk bollucks and just prescribe whatever is indicated on their little book for whatever your diagnosis is, they dont know much more.

[Neuronic]

Lol, I like everyone's attitude, it looks like I am not alone on thinking this.

This doc is up to something and I don't know for sure what. Past 3 visits he has kept asking me to look up genetic testing for narc. Before he ever asked I already knew what he was talking about and told him twice that I do but don't know where to get it done. He mumbled this last time "right, we are just playing around with meds" (because I will try taking my meds at different times and dosages to find what works best). He left and suddenly his nurse came in to take 4 vials of my blood.
I have two theories on why he's so persistent on finding the genetic marker in my blood to the point of drawing blood without my consent.
1. He plans on prescribing hypocretin supplements as treatment.
2. He is attempting to find more people with narcolepsy by checking for the genetic marker, trying to gain recognition.
3. He's sneaking a drug test along with it because he still thinks I am taking other drugs not prescribed. (he looks at me suspiciously)

I am thinking all this during the visit and he has no idea. lol

[NR2(x)]

He sounds like hes trying to understand causes rather than symptoms, this is very rare in a doc and may work out well for you. Maybe hes on to something,still be careful. Sounds like he wants you to look for a solution. Maybe you have xmrv?

Edited by NR2(x), 13 September 2010 - 02:27 PM.

[Neuronic]

He sounds like hes trying to understand causes rather than symptoms, this is very rare in a doc and may work out well for you. Maybe hes on to something,still be careful. Sounds like he wants you to look for a solution. Maybe you have xmrv?

Well it's pure speculation on my part, he's never said why he wanted me to look into it. I just get this strong feeling that he's not truly interested in me as a person, but is pursuing he's own interests. If it's by gaining recognition for successfully treating narc with hypocretin supplements or what.

Can anyone point me in a direction of human studies and hypocretin treatment?
I read a post here from the user wiserd about their friend taking supplements for narc, but I can't find any previous studies.
Lord knows I want to be cured, but I also don't want to be a guinea pig test rat either!

[arvcondor]

Throw my support in with the bunch. My role with doctors has, for the most part, been as the recipient of derisive looks that wordlessly tell me, "I know best, now shut the hell up." I'll admit that my doctors have always known MORE than I do, but the trick for me has been to find ones that are most willing to play ball and admit that there are a lot of treatments that never made it through the FDA blockade, that no longer have patents, etc. I've been dealing with cognitive impairment for about three years now, and every single treatment that has helped me I've discovered on my own/this forum. The conventional wisdom has seemed to be, "We took an MRI and can't see anything. Therefore, you are perfectly healthy." I'm sure many of you have tried the painful phenomenological exercise of explaining brain fog and whatnot to those who have no idea what you're talking about. Well, doctors also don't seem to know what I'm talking about, and thus I've had to resort to a long process of trial and error on my own.

Anyway, this is a good topic, and I appreciate you bringing it up. As for my advice, I'd say that you should do what works. And if you have the option, choose another doctor. (Although from what you've said, it sounds like you might be in a very small area.)

[NR2(x)]

I would be tested for, XMRV, endocrine(including steriods) and immuine,etc
I would be assuming that narco is also cronic fatigue syndrome
I would be taking Q10/idebenone, r-ala etc to enhance metabolism
Read about Ibogaine

Erythropoietin, hypocretan and GM CSF could be an amazing stack, the GM CSF counter acts the negative effects of hypocretan on beta amyloid and would also increase brain health because of increased microglia and might clear any virus.


You employ him for his ideas. He clearly believes that common medication will not provide the long term benefits you desire.He actually may know a answer, but wishs you to discover it, my doc did

[Neuronic]

I would be assuming that narco is also cronic fatigue syndrome

No, they may seem similar but especially in my case it is much different. It's an autoimmune disorder causing low levels of hypocretin and I am unable to sustain a regular sleep/wake cycle.
I would liken it to a switch in the brain that controls REM sleep. For everyone else, that switch is either on or off.
Most think people with narc just have a switch that randomly flips on and off, causing the person to randomly fall asleep. However I find it's more like that switch is stuck halfway between. Where I have rem sleep intrude during consciousness and consciousness intrude into my dreams.

In fact, cataplexy is when rem atonia is induced while you are still awake, in my case caused by strong humor and fear. Then there is sleep paralysis, brief hallucinations when falling/waking from sleep.
I could go on but that's the basics.
I have always felt the tiredness was always in my head and only in my head, the same time I want to sleep really badly I could do 40 pushups.
Which I believe is different that CFS. Am I right or wrong on this?

[arvcondor]

I would be assuming that narco is also cronic fatigue syndrome

Which I believe is different that CFS. Am I right or wrong on this?

From what I understand, you're right on this. The "fattigue" in Chronic Fatigue seems to refer to a pretty generalized deceleration, and the primary complaint is usually that people can't use their muscles. Sleepiness is another effect, but if you're ready to go battle Goliath, it's probably not CFS.

[NR2(x)]

Ok,well justified, so, neurological rather than metabolic.
Have you tried melatonin at nights?
Strong antioxidant, with a dopamine and GABA like action, controls sleep rythums etc

[Neuronic]

Ok,well justified, so, neurological rather than metabolic.
Have you tried melatonin at nights?
Strong antioxidant, with a dopamine and GABA like action, controls sleep rythums etc

No I haven't, I have heard of others trying it. It may be something worth looking into.

[chrono]

I agree with just about everything that was said in this thread. Most doctors have a limited range of knowledge, and try their best to present themselves as having all the answers. It comes down to using them to get what effective treatments you can, or finding a new doctor. If you think you're doctors attitude is becoming a significant impediment to making progress in your treatment, it's probably time to get a new one. Though if he's just dragging his feet a little, or if you're perhaps being a little paranoid that he's looking at you suspiciously, you may want to wait and see what he has in mind.

But saying that you should get genetic testing done is pretty silly. Some things are the doctor's responsibility, at least ostensibly. And you really have a right to know where he's headed—did you ask why they were drawing your blood? If he's thinking about starting you on hypocretic replacement, he should be making that clear, and you should be asking pointedly. Since I lost my insurance and have had to pay for all my medical care (many thousands of $$ worth), I feel like I have the right to know and direct where my care is headed. But even if insurance is paying for it, you're not a car, and he's not an auto mechanic, so I'd suggest that you start being a lot more assertive. It sounds like you have some good knowledge about the etiology of your disease, and are trying to read up on orexins; maybe broaden your search a bit to other possible treatments, and look for some narcolepsy support groups online.

[Neuronic]

If he's thinking about starting you on hypocretic replacement, he should be making that clear, and you should be asking pointedly. Since I lost my insurance and have had to pay for all my medical care (many thousands of $$ worth), I feel like I have the right to know and direct where my care is headed. But even if insurance is paying for it, you're not a car, and he's not an auto mechanic, so I'd suggest that you start being a lot more assertive. It sounds like you have some good knowledge about the etiology of your disease, and are trying to read up on orexins; maybe broaden your search a bit to other possible treatments, and look for some narcolepsy support groups online.

Yes... if I were only much more assertive. That's something I've always had trouble with, partly because I have trouble finding the words I am trying to say. So if I did speak up I would probably sound dumb trying to recall a simple word. (not a self-esteem issue, but experience)
However, once I get walked over too long I will do something about it.
I will definitely ask the next appointment on where he is going with it. If he didn't stick my arm for my own gain I will be pretty pissed.

I went back on Deprenyl 5mg per day for the last week and a half and after a few days. I noticed Xyrem doesn't give me quite the buzz and I am in a better mood the next day. Ritalin seemed a bit more effective, however I was careful because I don't know how much it will potentiate with deprenyl. It felt about the same, 5mg was fairly effective, 10mg made me more alert but I still feel chest pains with more than 5mg. (does it take getting used to?)
Provigil works much better now, far more subtle than ritalin. The effects only last about 3 hours before it starts wearing off, but better than nothing.

[chrono]

It felt about the same, 5mg was fairly effective, 10mg made me more alert but I still feel chest pains with more than 5mg. (does it take getting used to?)

It's a potentially dangerous combination; see this document at bluelight for some info. If you're going to do it, start at a low dose of ritalin, and titrate upward slowly and carefully so your body gets used to it.

[Neuronic]

It's a potentially dangerous combination; see this document at bluelight for some info. If you're going to do it, start at a low dose of ritalin, and titrate upward slowly and carefully so your body gets used to it.

I was going slow when trying it. I only took 2.5mg to begin with a few times, then 5mg, then 10mg.
I'm not convinced it's made methylphenidate that much better to be honest.
I was only prescribed 5mg per day and have skipped several days to use another dose on a busier day. So I doubt I have grown much of a tolerance to it.

However, I am experiencing intestinal problems I haven't had since... last time I took deprenyl. Caffeine causes similar problems, but not nearly as bad, so I attributed it to that at the time.
In fact I felt chest tightness again today and I had taken ritalin since yesterday, then realized that every time I did feel a tightness was about an hour after I took 5mg of deprenyl. So thinking it was probably coincidence, after the chest pain wore off I took 5mg, which somewhat woke me up, then an hour later 5mg more. I felt fine except for stomach pain I already had.

It seems that 5mg of ritalin helps break the lethargy, 10mg makes me think... deeper I guess, I could swear my memory is better. I wish I had more than 1 measly 5mg pill to play with per day. I'm curious if it will help my aphasia problems at 10mg or more.

I am going to stop deprenyl for now, perhaps 5mg is too much per day so according to how my Dr visits go I may start again with a smaller dose.