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My Doctor Has Given Up On Me


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#1 hilzaberry

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Posted 28 December 2011 - 03:33 PM

Hello all!

I have run into a horrific situation and have LITERALLY run out of ideas of what to do...I have a very a-typical form of narcolepsy and have had ZERO success in finding a treatment that works nor a doctor that can help me since I was diagnosed 3 years ago!!! I am currently 24 and my life is hell...my aunt (father's sister) also suffers from the same a-typical narcolepsy with the same treatment problems yet can still function (much milder case). I HOPE that SOMEONE on here can give me some idea to go on because I have reached the point where I would be willing to even consider international travel to seek treatment. Please help me. I am moving from Arizona to California in a month.

These are my basic symptoms...

I DO NOT suffer from the normal cataplexy (aka fainting/passing out due to emotional reaction) instead of reacting to emotion or stress as a normal narcoleptic would, I digress into what appears to be an odd catatonic like state (aka I don't pass out but lights are on and no ones home). I will also sleep for in excess of 24 hours at a time waking up only to use the bathroom if I am experiencing days with excessive stress. This is NOT A PSYCHIATRIC CONDITION NOR STATE ALL HAVE BEEN ELIMINATED! These episodes have been documented as a cataplexy attack during a sleep study!

The meds...

Currently I am taking 3 adderall 20mg tabs and use medicinal MJ in the evenings.

BEFORE

I had tried Provigil, Nuvigil, Seroquil, Xyrem, Ambien, Lunesta, Strattera, Effexor, Rittalin, Prozac, Torfrin, different codeine based drugs and over the counter sleep medications just for giggles.

ALL of the sleep medications made me have one of the following side effects:
Night terrors so horrific that I would wake up my fiancee screaming, tear the sheets, bruise myself, or hurt others.
I would sleep walk out of my home UNKNOWINGLY and be found miles away.
Have seizures.
Suffer anaphylaxis.
Suffer gastric symptoms such as inability to eat, vomiting, etc, etc...

As I said my doctors have given up.

#2 sleepyk

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Posted 28 December 2011 - 09:41 PM

I'm so sorry you're going through such a stressful time. Two ideas for you:

1.) Stanford Center for Narcolepsy. As far as I can tell, they are one of the leaders in understanding N. Here's the website: http://med.stanford....try/narcolepsy/

2.) Cleveland Clinic. They are known for taking tough cases, especially rare diseases and disorders. I have a friend who was sent there after months of no help, and they were able to figure out she has Churg-Strauss Syndrome, which only affects about 3 in 1 million people. She has tried multiple treatments, but the Clinic NEVER gave up on her. She still goes up there for treatment.

These are the 2 places I would try if I were in your boat. You will most likely need a recommendation from a doctor, neurologist, or other professional. I do know that the Cleveland Clinic is known for booking appts out 6-9 months for non-urgent cases. Pick a doc that will really tell your story! Maybe even ask to include your own letter with the doc's recommendation. My friend's case was interesting enough she got in immediately.

Keep trying! Doctor-hop until you find an answer! Read all you can, especially personal stories like on this site, to get ideas and support.

#3 Lis

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Posted 15 January 2012 - 11:27 PM

wow! that's tough! I definitely agree on the advice given. :)

#4 drago

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Posted 16 January 2012 - 09:25 PM

I DO NOT suffer from the normal cataplexy (aka fainting/passing out due to emotional reaction) instead of reacting to emotion or stress as a normal narcoleptic would, I digress into what appears to be an odd catatonic like state (aka I don't pass out but lights are on and no ones home). I will also sleep for in excess of 24 hours at a time waking up only to use the bathroom if I am experiencing days with excessive stress. This is NOT A PSYCHIATRIC CONDITION NOR STATE ALL HAVE BEEN ELIMINATED! These episodes have been documented as a cataplexy attack during a sleep study!


Is this like 'zoning out' - where you are aware you are awake and almost daydreaming, but filter out most stimuli? Or is this like you find yourself suddenly missing time after you 'snap out' of it?

From what others have said about cataplexy, you do NOT pass out or faint at all. You lose muscle tone. This can be a slacking in the jaw or a weakness to the legs/knees, to a full cataplexy collapse (as in, you fall down limp). However, you are still conscious. At least, this is what I have heard. Cataplexy is NOT fainting.

However, if you're not experiencing weakness or collapse, you may be experiencing automatic behavior instead. I know that any small repetitive action on my part can allow me to slip out of daydream/thinking mode and into "damn where did that half hour go?" mode.

I experience the zoning out an automatic behavior sometimes--just seeing if my experience matches up with yours at all.

ALL of the sleep medications made me have one of the following side effects:
Night terrors so horrific that I would wake up my fiancee screaming, tear the sheets, bruise myself, or hurt others.
I would sleep walk out of my home UNKNOWINGLY and be found miles away.
Have seizures.
Suffer anaphylaxis.
Suffer gastric symptoms such as inability to eat, vomiting, etc, etc...

As I said my doctors have given up.


Mayo Clinic. Have you contacted them?

You posted that your 24+hours sleep marathons coincide with excess stress. Have you sought the help of an endocrinologist, or even a neuro-endocrinologist? My endocrine system has been in cahoots with my neurological system for several years now, making my disorder harder to handle. I also have PCOS (which I treat with BCP) but the endocrine system also include stuff like your thyroid.

I recently discovered that you can have a flip/flop thyroid problem - where you have hypothyrodism-esque symptoms for a while then hyperthyroidism-esque symptoms. Do you think this can contribute to your symptoms?

The trouble is -- narcolepsy by itself is complicated. You add in any other issues, and things can be very difficult to diagnose. Stress-related sleep marathons can be be cause by a sudden over-surgance of the wrong hormones in your system, which can either cause the sleep-marathon OR trigger (or over-trigger) inhibitor hormones that are meant to keep you in balance.

Have you checked your GABA levels? I know when I had low levels of GABA in my system, I was more prone to sudden onslaughts of weak or "heavy" feelings. GABA requires you have Taurine (a nutrient found in meat and fish, among other things). I wasn't eating enough foods with Taurine, so I started taking a Taurine supplement until I could get my diet changed. (This is just one example of a neuro balancing thing. GABA is suppose to balance out stimulants, so the fact that mine was low was a big, big problem for me.)

Have you been checked for diabetes or pre-diabetes? I'm not sure what other reactions you have to stress -- but if you eat more sweet things, that could be triggering insulin-related issues. (Again, the endocrine system...) This could have any number of side-effects...

What are you allergic to? I personally had a nasty side effect to provigil (disorientation -- after I had been on the thing for a month!) and - what's worse - provigil didn't even WORK for me. However, if you are allergic to ANYTHING that serves as the filler or delay-barrier (for time-release formulas) in pharmaceuticals, that could definitely cause some of the side affects you describe. In the which case, the actual treatment option might be beneficial, but the delivery system (the capsule) that it's in is preventing that from happening. Have you been tested for possible medical allergies?

If you comb through the posts here, you may find that people have posted a variety of things - like Celiac's Disease / glutton allergies - that can also be major underlying triggers to overarching narcolepsy issues. Have you been tested for glutton allergies or Celiac's Disease?

Have you tried a ketonagenic diet? Generally it's recommended to people with refractory epilepsy -- a new medical supplement called Axona is now on the market that allows people to gain the same affect.

Finally, what non-medication-related alternatives have you tried? I personally find a lot of stuff 'hokey' when it is suggested to me; I'm instantly skeptical by 'non-medical' treatments. However, after a bit of investigation, I have discovered that several things work quite effectively for me, including:

* aromatherapy
* temperature modifications (such as heated gloves and/or socks)
* high-intensity workout (for me, karate and running)
* drinking HOT fluids keeps me alert (many narcoleptics experience this)
* drinking COLD fluids can make me tired (unlike for non-narcoleptic people, for whom it is other way around)


So -- hope this helps you out. In short - check to see if you are allergic to medical stuff and/or if your endocrine system is in cahoots with your narcolepsy.

Hope you're well,
drago

#5 Lis

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Posted 21 January 2012 - 03:45 PM

My cataplexy went undiagnosed for a number of years because docs would ask me if I ever "collapsed", etc etc. I never did. I was always sitting when it happened. They should've asked me that but I didn't know any better at the time. I also was describing them as "weird sleep attacks" that was the best I could describe the episodes at the time. I thought I was falling physically asleep, except I felt awake at the same time. I was sharply aware and able to hear everything around me, but unable to move or respond...or "wake up" as I would say. Once a doctor was bright enough to pic that up, I was able to get the appropriate treatment for it. :)

#6 Lis

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Posted 21 January 2012 - 03:46 PM

also, my if an episode was coming on, and I attempted to speak, it would go slurry to nothing at all. Most thought i was falling asleep in front of them because that's what it looked like from the outside. :)

#7 Mrs Nightminds

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Posted 02 November 2012 - 06:00 PM

also, my if an episode was coming on, and I attempted to speak, it would go slurry to nothing at all. Most thought i was falling asleep in front of them because that's what it looked like from the outside. :)



That's interesting! I explained something almosy identical to my doctor but because it happens as I'm waking up, he put it down to sleep paralysis.

#8 ce la vie

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Posted 04 November 2012 - 07:16 PM

Hello all!

I have run into a horrific situation and have LITERALLY run out of ideas of what to do...I have a very a-typical form of narcolepsy and have had ZERO success in finding a treatment that works nor a doctor that can help me since I was diagnosed 3 years ago!!! I am currently 24 and my life is hell...my aunt (father's sister) also suffers from the same a-typical narcolepsy with the same treatment problems yet can still function (much milder case). I HOPE that SOMEONE on here can give me some idea to go on because I have reached the point where I would be willing to even consider international travel to seek treatment. Please help me. I am moving from Arizona to California in a month.

These are my basic symptoms...

I DO NOT suffer from the normal cataplexy (aka fainting/passing out due to emotional reaction) instead of reacting to emotion or stress as a normal narcoleptic would, I digress into what appears to be an odd catatonic like state (aka I don't pass out but lights are on and no ones home). I will also sleep for in excess of 24 hours at a time waking up only to use the bathroom if I am experiencing days with excessive stress. This is NOT A PSYCHIATRIC CONDITION NOR STATE ALL HAVE BEEN ELIMINATED! These episodes have been documented as a cataplexy attack during a sleep study!

The meds...

Currently I am taking 3 adderall 20mg tabs and use medicinal MJ in the evenings.

BEFORE

I had tried Provigil, Nuvigil, Seroquil, Xyrem, Ambien, Lunesta, Strattera, Effexor, Rittalin, Prozac, Torfrin, different codeine based drugs and over the counter sleep medications just for giggles.

ALL of the sleep medications made me have one of the following side effects:
Night terrors so horrific that I would wake up my fiancee screaming, tear the sheets, bruise myself, or hurt others.
I would sleep walk out of my home UNKNOWINGLY and be found miles away.
Have seizures.
Suffer anaphylaxis.
Suffer gastric symptoms such as inability to eat, vomiting, etc, etc...

As I said my doctors have given up.

This all sounds soo horrible, I am really sorry you are going through so much. I know what you are going through is very serious, but have you tried a holistic approach.?Maybe try chinese medicine or a naturopath, if you haven't yet it would be worth a go.

Hope you figure it all out.
x

#9 NateTheGreat

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Posted 09 December 2012 - 11:59 PM

Any update on this? I was also going to recommend Mayo Clinic or Sanford University..

#10 Lunamaria

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Posted 13 December 2012 - 04:46 PM

Seriously, go to a specialty clinic. Also, have you tried Xyrem? I didin't see that one on your list.

Also, has Klein-Levin Syndrome been ruled out?

#11 hilzaberry

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Posted 13 December 2012 - 05:01 PM

UPDATE:

I am back and there is some improvement due the epiphany discovered via a very PRO patient anti-pills pharmacologic toxicologist I was referred to out here in California...basically he stated that my two doctors in Arizona (shrink and sleep), pretty much had poisoned me. My sleep doctor had prescribed me Xyrem as well as a plethora of other insane medications in combinations with my psychiatrist's prescriptions of severe anti-depressant medications which has basically caused a case of long term benzo poisoning. I have literally been slowly being put to sleep...I don't even know if I can do anything to make these people pay...the toxicologist said withdrawing medications will result in death and the same result will happen with staying on corse...I can't believe all of this.

#12 DeathRabbit

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Posted 13 December 2012 - 05:51 PM

UPDATE:

I am back and there is some improvement due the epiphany discovered via a very PRO patient anti-pills pharmacologic toxicologist I was referred to out here in California...basically he stated that my two doctors in Arizona (shrink and sleep), pretty much had poisoned me. My sleep doctor had prescribed me Xyrem as well as a plethora of other insane medications in combinations with my psychiatrist's prescriptions of severe anti-depressant medications which has basically caused a case of long term benzo poisoning. I have literally been slowly being put to sleep...I don't even know if I can do anything to make these people pay...the toxicologist said withdrawing medications will result in death and the same result will happen with staying on corse...I can't believe all of this.


What benzos were you on? If they had you on benzos and Xyrem it's a huge malpractice case! For eff's sake, you aren't even supposed to take the X if you've had a beer in the last 4 hours.

Edit: There's got to be a way you can back the dosage down slowly. I refuse to believe you're just walking dead! Keep us posted on what you learn.