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Freaking Know It All Doctors....


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#1 Marcianna

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Posted 22 April 2009 - 04:22 PM

I am so flipping mad right now. I hate this stupid country and its stupid drug companies where Doctors dont give a crap about what you think or know, or any personal research you have done, they just want their flipping kick backs from provigil and other crap meds that are simply not meant for everyone. We are not talking flinstone vitamins you jack asses! Why in the hell cant I have at least some sort of say as to what I put in my body?


I decided I am getting bad enough that I should probably go on meds finally. After all this time. And they want to put me on Provigil and prozac again. both drugs I have done before, and didnt work. And if that doesnt work then they wantto try ritalin. Which I have a family history of having problems with. ( my doctor ACTUALLY SAID family histories dont matter when it comes to drugs. what a load of *BEEP*!) Only after they bounce me around from drug to drug to drug will he let me try Xyrem. Any one of you know me well enough that I am not even a fan of xyrem .it scares me to death, but I payed real close attention to all of you and your stories and decided it was worth a try at least...


I dont care if I have to see very doctor in the damn country I AM going to get my way on this or simply never take drugs again. I am absolutely fed up with this system .They see my medical cards and All the sudden I am a damn guniea pig. Its total bull*BEEP*.

I am not going to play this freaking game.

#2 Lais02

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Posted 22 April 2009 - 04:36 PM

Do you know if your doctor has any other patients taking Xyrem? My first doctor had no idea what to do with me simply because I was his ONLY N patient. I obviously switched after that, but maybe your doctor doesn't know much about Xyrem. It does sound scary if you aren't familiar with it. Doctors sure can be a headache though sad.gif

#3 Irishhh

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Posted 22 April 2009 - 06:55 PM

Are you seeing a somnologist? or a general practitioner? or someone entirely different?

#4 sleepless sleeper

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Posted 22 April 2009 - 07:52 PM

I am really sorry that it's gotten that hard for you. Is there anything that I can do? You in my thoughts...

#5 Henry G

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Posted 22 April 2009 - 08:36 PM

Hi Marcianna

Do not take Provigil and Prozac if they don't work or even make things worse.

A lot of these doctors want you take certain medicines to make it easier on them. They care little about their patients.

Explore your options and the vast arrays of medicines that can help or lessen Narcolepsy.

As stimulants goes - I don't know which ones they have there in the US.

But as said early, I personally have found and still find: Ritalin from Norvatis - to be the gentlest and most effective.

But that is *me* - one's person medicine could be someone elses poison.

And if you do have a bad feeling about Ritalin. Don't listen to anyone else but Yourself.

You and only you know best - really!

Follow and trust your intution, always. Not others. Or doctor's. Or peoples.
Sure gather ideas, tips, suggestions, data but in the end go with what you deep inside feel is best

I used to get medical amphetamines (ie benzedrine) but I do not know if that is available in the US.

It is very gentle - perhaps even too weak. It works in short duration. I find it useful for a mini pick me up. Adding it to coffee, or tea, or some caffeinated drink like that.

I think what you can get in the US and the UK is only dextro-amphetamine.

I think I tried it once in Brazil. Some wannabe skinny for the rest of her life ex-model gave it to me, some years back when I had nothing at the time and was desperately feeling sleepy.

Her doctor prescribed her - to curb her appetite. But she said that truck drivers take them to stay awake and drive well all night.

So I tried it - and felt it to be pretty useless. But I can't judge on just one pill. Maybe it was too weak? Or maybe my body needed time to get acustomed to it?
Not sure. Any other medicine to wake me up - did wake me up on the first try.

So the impression I got (and very possible wrong one) is that dextro-amphetamine is not ideal.

I say very possible wrong one because what if that specific prescription is more to make people not eat - instead of making them awake? And what if medical dextro-amphetamine designed specially for narcoleptics works different. Also what if what she gave me was a mixture of slim-fast things really. I will never know, I never saw her again - prolly she became thinner and thinner until vanishing in mid-air.

I think Dexedrine is what they prescribe there and in the UK.

Then there is Adderall, which as far as I understand is a mix-mash of many things. I never tried it.

Provigil is yikes! But I still believe it can be useful for the very odd occasion (never daily). That is when you have to attend a wedding or be awake during a long college lecture. But the problem is that, is that it is very easy to suddenly start taking it more and more frequently and then it becomes a daily thing (which will then make it lose potency fast)

Anti-depressants SSRIs

These are for Cataplexy mostly. Something I don't seem to have. Or if I do it manifest differently.

SSRIs are aggressive, so unless it helps you - I see no point in taking them.
But it does work well with many individuals and lessen their cataplexy.
There are many SSRIs; but I know and have experienced only 2: Prozac and Effexor.
I have experienced a 3rd one but can't remember it's name.
Suffice to say, I have found them all horrible. Effexor being the very worst thing on earth (for me).
Prozac just made me very weak.
Did make me kinda happy in the beginning but that could be placebo.

But I have had reasonable results with a non-SSRI antidepressant.

One that is rarely used for Narcolepsy but one that I believe doctors and practioners should prescribe more.

And that is Wellbutrin / Bupoprion

It is a mood-enhancer. It is also a mild stimulant.
I have no idea if it helps with cataplexy though.
But I have had no bad experiences with it - just found the pill kinda too big and heavy to swallow. Like swallowing a pebble.

It's the sort of medicine you forget to take, because you hardly notice a difference.
But it does make a difference. It is just more of something that works mostly in the background. Something if you stop to think and notice over a long period of time you come to conclusion that yes, it helps (if not just a bit, then a very considerable bit)

Anyway I just wished there was a medicine for Apnoea

Since I personally been suffering from it. And the reason why Xyrem is not ideal in my case.

I hope it works out for you. And that you find out what works best.

hugs

H

#6 Marcianna

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Posted 23 April 2009 - 07:52 AM

Thanks guys, I appreciate you listening to me rant.... I am on the hunt! that "sllep speciailst" is rediculous...

#7 dogdreams

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Posted 23 April 2009 - 09:46 AM

Boy, I hear ya! Maybe a "schlep specialist" would do a better job. wink.gif If there's one thing I've learned in life, it's that the last person to know anything about sleep medicine is a "Sleep Specialist". Weird, huh?

#8 jenji

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Posted 23 April 2009 - 11:27 AM

QUOTE (Marcianna @ Apr 23 2009, 08:52 AM) <{POST_SNAPBACK}>
Thanks guys, I appreciate you listening to me rant.... I am on the hunt! that "sllep speciailst" is rediculous...


Hey. Yeah, there's nothing worse than a bonehead for a physician, especially when that bonehead claims to be a "specialist" in any field.

I see from your profile that you're in Ohio? If worse comes to worse, you could always head up to Western New York, as there is a fantastic sleep clinic called Sleep Medicine Center of WNY. These are all MDs and for the most part they're all neurologists as well as sleep specialists, that is specific training in sleep disorders, while narcolepsy is one of their specialties. After all of the doctors I've seen, I would highly recommend to anyone looking for a sleep doctor that they find one who is also a neurologist as well as a sleep specialist. They have a broader scope and understanding of sleep issues and how the brain and sleep can affect the body. They are top-notch and very, very kind; from their secretaries to their doctors, they are just wonderful.

Anyway, depending on where you are in OH it may be worth thinking about a commute every few months. I dunno, I can get to some cities in OH in 4-5 hours (say Norwalk) and others in 8, it all depends where you are.

Here's the link in case you're interested: http://www.sleepmedicinecenters.com/

However, you will probably need to try alternatives to Xyrem no matter where you go that is unless you have severe cataplexy. My doctor finally prescribed it 5 months into treatment for my profound EDS as other drugs were not helping with restful sleep and thus my EDS, while Xyrem ended up not being for me, my body didn't agree with it at all, but that's not to say I won't give it a go again sometime in the future. My point is that you have to expect trial and error b/c Xyrem is a big, big deal and so highly regulated that many doctors, even the fantastic specialists that I see will not just prescribe it without exploring other options first.

Good luck.
jenji

#9 Marcianna

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Posted 23 April 2009 - 05:08 PM

QUOTE (jenji @ Apr 23 2009, 05:27 PM) <{POST_SNAPBACK}>
Hey. Yeah, there's nothing worse than a bonehead for a physician, especially when that bonehead claims to be a "specialist" in any field.

I see from your profile that you're in Ohio? If worse comes to worse, you could always head up to Western New York, as there is a fantastic sleep clinic called Sleep Medicine Center of WNY. These are all MDs and for the most part they're all neurologists as well as sleep specialists, that is specific training in sleep disorders, while narcolepsy is one of their specialties. After all of the doctors I've seen, I would highly recommend to anyone looking for a sleep doctor that they find one who is also a neurologist as well as a sleep specialist. They have a broader scope and understanding of sleep issues and how the brain and sleep can affect the body. They are top-notch and very, very kind; from their secretaries to their doctors, they are just wonderful.

Anyway, depending on where you are in OH it may be worth thinking about a commute every few months. I dunno, I can get to some cities in OH in 4-5 hours (say Norwalk) and others in 8, it all depends where you are.

Here's the link in case you're interested: http://www.sleepmedicinecenters.com/

However, you will probably need to try alternatives to Xyrem no matter where you go that is unless you have severe cataplexy. My doctor finally prescribed it 5 months into treatment for my profound EDS as other drugs were not helping with restful sleep and thus my EDS, while Xyrem ended up not being for me, my body didn't agree with it at all, but that's not to say I won't give it a go again sometime in the future. My point is that you have to expect trial and error b/c Xyrem is a big, big deal and so highly regulated that many doctors, even the fantastic specialists that I see will not just prescribe it without exploring other options first.

Good luck.
jenji



Thanks for the info I will look into them. . . I have actually tried provigil before and I will jump off a mountain before I take those crack pills again. lol... My cataplexy is severe I have actually severely injured myself from it before. (fell on scissors. good thing I stabbed my leg and not my abdomen....) so maybe that will help? I also have fibromyalgia and my wheight is getting out of control... so lots of things it can help with one drug. Why that seems like a bad idea to them I just dont understand....

#10 shallow_water

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Posted 23 April 2009 - 06:33 PM

UGHHHHHHHHHHHH ........... some doctors are such morons. If you ever travel to the poconos in pa I will gladly give my neuro's name - he is fantastic and caring.


A few sleep specialists I have encountered are registered as Sleep Diplomates but if you do a a medical license search from your state website you will see alot of them have no real training in sleep disorders and are basically just an MD with a certificate hanging on the wall, I have also found the same thing with ENT docs.

#11 Marcianna

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Posted 23 April 2009 - 08:00 PM

QUOTE (shallow_water @ Apr 23 2009, 11:33 PM) <{POST_SNAPBACK}>
UGHHHHHHHHHHHH ........... some doctors are such morons. If you ever travel to the poconos in pa I will gladly give my neuro's name - he is fantastic and caring.


A few sleep specialists I have encountered are registered as Sleep Diplomates but if you do a a medical license search from your state website you will see alot of them have no real training in sleep disorders and are basically just an MD with a certificate hanging on the wall, I have also found the same thing with ENT docs.




WOW. Disturbing.....

#12 Mike M

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Posted 23 April 2009 - 10:43 PM

Marcianna,

One other important item of "leverage" is that the AASM has named Xyrem (and Provigil) as the prefered (and expected) first treatment for narcolepsy (with or without cataplexy). It also clearly states that a patient should be taken off a med that does not work. Thus, any doctor who is truly knowledgeable about narcolepsy should know in moments that he (or she - but I tend to find more boneheads among male physicians) should NOT put you back on Provigil, but should most definitely get you on Xyrem. Good luck! As I stated elsewhere, I think Lais02 has the marvelous Eve Rogers pondering your situation. You are in my thoughts.

PS I am SURE that you would feel better if you just got more sleep. I mean everyone gets tired...JOKING!

#13 jenji

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Posted 23 April 2009 - 11:49 PM

Marcianna:

Hey, one more thing, be careful about telling doctors that you have fibromyalgia. Unfortunately that dx carries a profound stigma, even more so than narcolepsy if you can believe it.

My strategy, as I have both as well was this:

When seeing a new doctor I only told him about FM if asked. However, for the most part, a sleep doctor should know that FM is a possibility as its major stressor is unrestful, disturbed sleep; the cause is a whole other story, hence the stigma.

And so, feel any new doctors out and you'll know when it's time to tell them, if at all. I used to have a doctor that didn't even know about it b/c he was a misogynistic pig who literally scoffed at the dx before I even mentioned it, I don't remember how it came up, but he basically said he didn't believe in it and you'd be surprised, there are many, many doctors who do not believe in it, as they believe it is a neurotic, psychosomatic condition, despite the published, overwhelming evidence that it is indeed a central nervous system disorder. And so, I kept the condition to myself while with him and simply let a rheumatologist handle the FM and the jackass handle the other issues.

Thankfully, I now have a doctor who handles both and believes in both, as one exacerbates the other. And so I only caution you so that you might have some insight as to what you might run into out there b/c if I remember correctly you have been just recently dx'd with FM and I've been dealing with it since '95. I've run into several doctors who have a major hang up about FM. The stigma is a bit better, but when you run into the ignorance, it burns deep.

Good luck.
jenji

#14 Lais02

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Posted 24 April 2009 - 12:51 AM

QUOTE (Mike M @ Apr 23 2009, 09:43 PM) <{POST_SNAPBACK}>
As I stated elsewhere, I think Lais02 has the marvelous Eve Rogers pondering your situation.

PS I am SURE that you would feel better if you just got more sleep. I mean everyone gets tired...JOKING!


This is true... I passed your info on to Dr Eve. smile.gif She told me that she does know some doctors in OH that are good, so hopefully you will be able to see someone she suggests.

Of course if you just got more sleep you'd feel better! lol Isn't that exactly the problem... none of us get enough "good" sleep. So yes Mike, if any of us could just get the right amount of "good" sleep we'd all be doing much better. smile.gif

#15 Marcianna

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Posted 24 April 2009 - 06:33 AM

QUOTE (jenji @ Apr 24 2009, 05:49 AM) <{POST_SNAPBACK}>
Marcianna:

Hey, one more thing, be careful about telling doctors that you have fibromyalgia. Unfortunately that dx carries a profound stigma, even more so than narcolepsy if you can believe it.

My strategy, as I have both as well was this:

When seeing a new doctor I only told him about FM if asked. However, for the most part, a sleep doctor should know that FM is a possibility as its major stressor is unrestful, disturbed sleep; the cause is a whole other story, hence the stigma.

And so, feel any new doctors out and you'll know when it's time to tell them, if at all. I used to have a doctor that didn't even know about it b/c he was a misogynistic pig who literally scoffed at the dx before I even mentioned it, I don't remember how it came up, but he basically said he didn't believe in it and you'd be surprised, there are many, many doctors who do not believe in it, as they believe it is a neurotic, psychosomatic condition, despite the published, overwhelming evidence that it is indeed a central nervous system disorder. And so, I kept the condition to myself while with him and simply let a rheumatologist handle the FM and the jackass handle the other issues.

Thankfully, I now have a doctor who handles both and believes in both, as one exacerbates the other. And so I only caution you so that you might have some insight as to what you might run into out there b/c if I remember correctly you have been just recently dx'd with FM and I've been dealing with it since '95. I've run into several doctors who have a major hang up about FM. The stigma is a bit better, but when you run into the ignorance, it burns deep.

Good luck.
jenji



ahhh. I actually never told him Your absolutely right in what you said here and thanks to a good friend of mine in the Netherlands who also has Fibro, I "oops forgot to mention it" to my doctor. wink.gif

#16 Marcianna

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Posted 24 April 2009 - 06:35 AM

QUOTE (Mike M @ Apr 24 2009, 04:43 AM) <{POST_SNAPBACK}>
Marcianna,

One other important item of "leverage" is that the AASM has named Xyrem (and Provigil) as the prefered (and expected) first treatment for narcolepsy (with or without cataplexy). It also clearly states that a patient should be taken off a med that does not work. Thus, any doctor who is truly knowledgeable about narcolepsy should know in moments that he (or she - but I tend to find more boneheads among male physicians) should NOT put you back on Provigil, but should most definitely get you on Xyrem. Good luck!



Mike where can I get that information?

QUOTE (Lais02 @ Apr 24 2009, 06:51 AM) <{POST_SNAPBACK}>
This is true... I passed your info on to Dr Eve. smile.gif She told me that she does know some doctors in OH that are good, so hopefully you will be able to see someone she suggests.


Thanks you guys I am so glad I had everyone here to turn too....

#17 shallow_water

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Posted 24 April 2009 - 08:05 AM

QUOTE (Mike M @ Apr 23 2009, 11:43 PM) <{POST_SNAPBACK}>
PS I am SURE that you would feel better if you just got more sleep. I mean everyone gets tired...JOKING!



50 lashes with a wet noodle for that!

#18 merrymom1013

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Posted 24 April 2009 - 06:18 PM

Ohio?
Is Dr. Clark still there- maybe in Columbus, I'm not sure? I've heard he is excellent & that he is also a PWN.

#19 mtc

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Posted 24 April 2009 - 10:09 PM

Marcianna
I didn't read all the posts. I just can't focus that much, but is there a doctor anywhere in the US that is consdered competent? If there is, I want to make an apt. I am sick of the b.s. too and would go anywhere to see a good doc.

#20 Marcianna

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Posted 25 April 2009 - 10:01 AM

QUOTE (merrymom1013 @ Apr 25 2009, 12:18 AM) <{POST_SNAPBACK}>
Ohio?
Is Dr. Clark still there- maybe in Columbus, I'm not sure? I've heard he is excellent & that he is also a PWN.


?? Doctor Clark who? Do you happen to know a First name? A doctor who is pwn....wow that would be kind of cool....maybe?