Author |
Topic: HELP, she said I have Narcolepsy! (Read 420 times) |
|
millie the episodic
New Board Junior
God Bless all CH victims!
Gender: 
Posts: 58
|
 |
HELP, she said I have Narcolepsy!
« on: Aug 3rd, 2005, 10:54pm » |
 Quote  Modify
|
Hey All,
I went back to the dr today, and she has labeled me as having Narcolepsy. I can find nothing to support this, and as usual I need your help.
I read about Narcolepsy and it doesn't sound like me. Not getting enough rest period (from being a shift-worker), sounds like me. Not getting hardy any sleep during a cycle, for fear of having a headache, and then having a headache, sounds like me, but not Narcolepsy.
I have always been told that I was the life of a party, that I was so energetic, so happy and full of life. That is when not in a cycle, and even then no one has ever said Millie, you just feel asleep while we were talking. I have had no wrecks from falling asleep while driving. No injuries at work from falling asleep on the job.
She has me on Lorazapam 1.0 mg, Amitriptyline 30mg, both at bedtime. Starting tomorrow take 1 Addarall after waking up.
I keep asking what this has to do with clusterheadaches and she says that your sleepping habits affects your whole body.
I realize that I am no more than an experiment and I am trying to deal with this if I can help myself if not someone else, but I REALLY DON'T THINK THAT I HAVE NARCOLEPSY!
I tell her one thing, and she turns it around to fit her theory. She seems to have her mind set that I have a sleep disorder, and after dealing so long, I guess that I almost want to have something, if they can fix it. This sound sad, even to me, but I am tired of this all. I just hope that my insurance co doesn't kick me out of the program, while they are experimenting.
Needing your help! Millie 
|
|
 IP Logged |
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #1 on: Aug 3rd, 2005, 11:09pm » |
Quote Modify
|
Don't panic, millie. Is this dr a neurologist? No matter who the dr is, most ins companies will pay for a second opinion. Get that rolling ASAP. With a dx of narcolepsy, ask for a referral to a sleep specialist (they will likely want a sleep study as well). Are you taking any other meds for the CH? (sorry, I'm not up to speed on what you've tried, etc)
I have actually read a report here about Adderall aborting a CH. I have ADD and should take Concerta (also a stimulant) but I find that it makes my shadows worse.  If you're not comfortable using it, don't.
Lorazepam is a tranquilizer and Amitriptyline is an anti-deppresant. I think it was used for CH a long time ago, but I'm not sure of it's efficacy.
Did you ask for oxygen and preventatives?
fill me in...
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
millie the episodic
New Board Junior
God Bless all CH victims!
Gender:
Posts: 58
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #2 on: Aug 3rd, 2005, 11:19pm » |
Quote Modify
|
I take zomig or imitrex injection (on or the other)and 02 as abortives.
I have had these hellofaheadaches for about 13 - 14 years.
She is a neuro, who said that she has cluster patients that she has helped. She did bloodwork and a EEG and a MSLT ( 8hrs of sleep testing in her office).
I keep telling her that I don't think that I get enough sleep BECAUSE of the headaches, or for the fear of getting a headache after going to sleep.
|
| « Last Edit: Aug 3rd, 2005, 11:20pm by millie the episodic » |
IP Logged |
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #3 on: Aug 3rd, 2005, 11:26pm » |
Quote Modify
|
OK, so at least you have an abortive for now. Remember... don't mix triptans in a 24 hour period, it could be very dangerous. I would definitely tell her that you want a second opinion. In the meantime, find another neuro. It seems to me, that even if you have narcolepsy, the CH is a different issue and should be treated as such. Call in the morning. If she resists helping you get another opinion, call your ins co for help.
Good luck, millie. Keep us posted. pain free wishes, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
BobG
New Board Hall of Famer
Gender: 
Posts: 5747
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #4 on: Aug 3rd, 2005, 11:30pm » |
Quote Modify
|
Quote:| I tell her one thing, and she turns it around to fit her theory. |
|
I also have a theory.
Time to go doc shopping.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
Leggs
New Board Veteran
Live to learn, die & forget it all - Milo Puckett
Gender:
Posts: 196
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #5 on: Aug 4th, 2005, 6:34am » |
Quote Modify
|
I accidentally bleeped out a window with a long reply, but in short, I agree with Bob, for the exact reason he quoted, which is the exact reason I left my last neuro.
I will tell you more later, after get the kids off to the first day of school, and go to a doctor's appointment.
|
|
IP Logged |
Some people have one of those days,
I Have One Of Those Lives, And I Love It
ihootlaili
|
|
|
Sandy_C
CH.com Alumnus
New Board Hall of Famer
Burn that bra!
Gender:
Posts: 2585
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #7 on: Aug 4th, 2005, 7:48am » |
Quote Modify
|
IMHO, get thee to another doctor ASAP for a second opinion.
|
|
IP Logged |
Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
|
|
|
Ueli
Guest
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #8 on: Aug 4th, 2005, 9:21am » |
Quote Modify
 Remove
|
"she says that your sleeping habits affects your whole body", and presumably causes CH - talk about bridling the horse on the wrong end  .
I agree with the others, get a new neuro, one who has heard of preventatives like Verapamil.
As to Amitriptyline, that's the stuff that causes narcolepsy, at least for me. The neuro gave it to me as a sleeping aid (only 10 mg). For the first 3 nights I slept like a baby, but that effect soon wore off and instead I felt sleepy and tired during 'waking' hours. Needles to say, I stopped it after a week.
PFNADs, Ueli 
|
|
IP Logged |
|
|
|
Leggs
New Board Veteran
Live to learn, die & forget it all - Milo Puckett
Gender:
Posts: 196
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #9 on: Aug 4th, 2005, 10:31am » |
Quote Modify
|
Okay, back from dropping off the kids...
Seems we are of the opinion you find someone new!!! Bridling the horse on the wrong end, like that comparison. Seems like she has found some relief for other patients with sleep issues, but someone who knows about clusters, or who has experienced them, isn't necessarily lacking the REM sleep, I fall asleep like rock. REM sleep happens pretty soon after you fall asleep I believe. Clusters have the famous 2am/3am wake up call, which is well after REM sleep.
Everyone is advising about the triptans, as do I, but if your just starting, and it's not helping, don't get into it.
Melatonin would probably help you get to sleep if your were paranoid of falling asleep, and just had an anxiety issue thinking about being woke up. Kudzu might be an option, but you have to, again, watch with the triptans.
I wouldn't even go so far as you trying something new, Was the 'trex and O2 working for you? If so, build on your success. It bothers me that she wants to wipe the slate clean from what was working, and take a side trip to sleep issues. Pretty much exactly what happened to me with a neuro that caused me hell for the past 6 months, he didn't want to hear squat about what led up to my coming to him, that my clusters had changed and did not go away in the usual two weeks. Did all these diagnostics, like you said about your doctor, like he had a diagnosis in mind, saying the one sided pain meant I had trigeminal neuralgia. The new doctor LISTENED when I told him the "new" pain was not one sided independent of the cluster, and numbness came from scars on one side of my face.
The old doctor blew that off, he didn't want to listen. He picked ONE aspect of what WAS TN, and blew off 5 others that were strictly attributed to clusters.
With you, your doctor is honing in on "sleep" and blowing off other things a BIGGIE being you had already been diagnosed with clusters. She says she helped herself with the sleep stuff, but I doubt she even had clusters if all that melarky worked. MIllie, it does NOT make sense, you have trouble falling asleep, from anxiety of the cluster waking you up, and you are exhausted the next day. GO WITH YOUR GUT!
See if there are any recommendations around where you live. I never gave my doctor the benefit of saying I wanted I second opinion, I just left. I think all the new meds will cause you all kinds of other mess, instead of just working on your CH, like the a$$hole neuro gave me neurotin, a seizure med. You are supposed to let it build up in the system, and NEVER go off it without a doctor's assistant. I call up the nurse, and tell her it sedated me and made me swell up like a whale, and she says "Oh, well just take it when you need it" It is NOT a medication to be taken symptomatically!
Your doctor is going off on a wild tangent (hey, with this rant, I am one to talk about going off on tangents, eh?)Do you have a GP or even a gynecologist who could recommend or refer you to someone!? Write me or IM me if you want to talk about it. I want you out of that office!
|
|
IP Logged |
Some people have one of those days,
I Have One Of Those Lives, And I Love It
ihootlaili
|
|
|
millie the episodic
New Board Junior
God Bless all CH victims!
Gender:
Posts: 58
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #10 on: Aug 4th, 2005, 12:02pm » |
Quote Modify
|
Thank's E-Double, you have just confirmed, with the website you included, that I Millie, do not have Narcolepsy.
I am going to make an appointment with my GP and talk to him. I'm almost tempted to call my previous neuro. 
Whooo is me!!!
But I am holding my head up, because I may be a clusterhead, but that doesn't make me a dumbhead! 
|
|
IP Logged |
|
|
|
rextangle
Guest
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #11 on: Aug 4th, 2005, 1:00pm » |
Quote Modify
Remove
|
God those doctors!!! 
If one has narcolepsy, they know it!!!! It's not something you think you may or may not have!!!!
It's like if you have 3rd degree burns... you just know it!
If you have narcoleps....zzzz....zzzz....zzzz 
|
|
IP Logged |
|
|
|
millie the episodic
New Board Junior
God Bless all CH victims!
Gender:
Posts: 58
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #12 on: Aug 4th, 2005, 9:06pm » |
Quote Modify
|
From what I have read about this condition, it would seem that it would be obvious that one has it, and the more I read, the more I know I AM NOT A NARCOLEPSY VICTIM.
Meanwhile, I am taking all these bullshit pills, and I am in hell (dancing with the devil) as I type. But I need help, and if the drs can't help me, then were am I to go.
My head is busting, no, it"s really burning, and aching, my eye (it is amazing the abuse that my eye can take and not burst) and my neck is drawing up so tight I can't hardly stand it.
Does Narcolepsy cause servere pain like this, does it make your nose burn like this, make you cry out of one eye?
Everyone says, don't mix tripans, but what about all this other stuff, what does it do when mixed together?
Is there a real doctor in the house?
I feel like I am out of control, because I can't help myself.
Fighting the beast, and losing, Millie 
|
|
IP Logged |
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #13 on: Aug 4th, 2005, 11:35pm » |
Quote Modify
|
That doctor couldn't help you. Have you made another appointment yet? pf wishes, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
millie the episodic
New Board Junior
God Bless all CH victims!
Gender:
Posts: 58
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #14 on: Aug 5th, 2005, 12:14am » |
Quote Modify
|
My Husband and I have decided to try this for a week or so, but I am writting everything down, especially the meds.
I have not ruled out returning to previous neuro if I am no better.
The clustersdud is still able to knock me up, even out of a stuper.
Meanwhile she gave me nothing else to fight with, just sleeping, waking up, nerves. What about my head! 
Can anyone recommend a CLUSTER HEADACHE Dr.?
Somewhere aroound Tennessee?
Millie   
|
|
IP Logged |
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #15 on: Aug 5th, 2005, 3:40pm » |
Quote Modify
|
on Aug 3rd, 2005, 11:26pm, nani wrote:| Remember... don't mix triptans in a 24 hour period, it could be very dangerous. |
|
Why do people keep saying that on this board? I mix them all the time under the direction of my neuro. Amerge twice a day as a preventative (until the lithium and verapamil become effective), and Maxalt as needed (no more than twice in a 24 hour period).
I am under the care of one of the premiere neurologists in my area and he has said that mixing triptans is fine if you're otherwise healthy.
We should all be more careful about making statements that should be coming from a doctor.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
Leggs
New Board Veteran
Live to learn, die & forget it all - Milo Puckett
Gender:
Posts: 196
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #16 on: Aug 6th, 2005, 9:04am » |
Quote Modify
|
As long as Nani has been around I don't think she needs to worry about saying something that was coming out of a doctor's mouth, she probably has heard most of it.
The operative word there is COULD, when we are being computer chair doctors, it's better to be safe than sorry.
http://www.clusterheadaches.org/doctors.htm#usa
You have quite a few in your area, Millie! Go doctor shopping on Monday. If you KNOW you don't have narcolepsy, WHY are you trying this out for a week?? You are just putting all kinds of crap in your system, and the issue at hand, CLUSTERHEADACHES, is not being helped, and appears to be aggravated by it all. I seriously think you may have a lawsuit for malpractice with this woman.
|
| « Last Edit: Aug 6th, 2005, 9:05am by Leggs » |
IP Logged |
Some people have one of those days,
I Have One Of Those Lives, And I Love It
ihootlaili
|
|
|
kimmeesue
New Board Old Timer
Gender:
Posts: 291
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #17 on: Aug 6th, 2005, 4:16pm » |
Quote Modify
|
I have recently gone through a similar situation. My neuro sent me for a sleep study which showed sleep apnea. So he sent me to a pumnary specialist (deals with sleep disorders also) who is having me set up with CPAP BUT said he doesn't think it will do anything for my headaches. Will improve my overall quality of life but he doesn't think it is related to the CH which, BTW my neuro has decided I don't have. Afraid he's one of those "if I can't cure it, it doesn't exist" type of doctors. I see the neuro again Monday and if he doesn't do more than the usual "follow my finger and walk the line" I'm just gonna go back to my GP. At least he admits when he doesn't have a clue.
Kim
|
|
IP Logged |
If I wasn't doing this I'd probably be doing something else.
|
|
|
Leggs
New Board Veteran
Live to learn, die & forget it all - Milo Puckett
Gender:
Posts: 196
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #18 on: Aug 6th, 2005, 5:46pm » |
Quote Modify
|
So why is it he does not think you have clusters? The USUAL things don't work? How long have you been diagnosed? Aren't those records in his files? Speak up, and if he's not going to take care of your needs and listen, LEAVE.
I really learned a lesson with my latest neuro idiot. I guess when I am in pain I tend to dummie up, it's such effort to deal with this, you kind of just want to hand the reins to someone else you THINK knows what they are doing.
I am truly a person who will stand up and speak when I think something is wrong, but I have just been in such consistent terrible pain this year, I am just worn out.
Millie and Kimmee, stand up for yourselves and get the right treatment.
|
|
IP Logged |
Some people have one of those days,
I Have One Of Those Lives, And I Love It
ihootlaili
|
|
|
kimmeesue
New Board Old Timer
Gender:
Posts: 291
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #19 on: Aug 6th, 2005, 6:30pm » |
Quote Modify
|
on Aug 6th, 2005, 5:46pm, Leggs wrote:So why is it he does not think you have clusters? The USUAL things don't work? How long have you been diagnosed?
|
|
In my case, I was first, and correctly diagnosed during my last pregnancy by a GP at a small town hospital. That was 22 years ago. I was episodic for the next 18 years. It was when I went chronic and my present GP was frustrated, although he did as much research as I did) that I was referred to one neuro who promised to "cure" me. Well, one triptan after another lasted three months max and she exhausted her bag of tricks My Gp referred me to yet another neuro who wanted to try Botox. My insurance wouldn't pay for it so we went back on the drug treadmill.
Why has he decided I don't have CH??I guess he doesn't understand how chronic CH differs from episodic. Trying to explain the difference between shadows and full-on hits is like nothing I've ever had to do and I taught special -ed for 10 years. He just doesn't get it. I don't know if it's a language barrier (he's Indian) or a gender issue(I'm just a woman) but I really feel I got better treatment from my GP. Actually I think the sleep disorder doctor has a better understanding of CH. I think my veterinarian has a better understanding of CH. I know my dog does.
|
|
IP Logged |
If I wasn't doing this I'd probably be doing something else.
|
|
|
millie the episodic
New Board Junior
God Bless all CH victims!
Gender:
Posts: 58
|
|
Re: HELP, she said I have Narcolepsy!
« Reply #20 on: Aug 9th, 2005, 10:58pm » |
Quote Modify
|
I have to agree that I have had better results with my GP, than I have with all the neuros that I have been to, and I think I am up to about 7 or 8, but who is counting. I think that they all think that I am crazy when I TRY and explain the pain of it all, and how they wake my up, and how I have thought I needed to cut my head off or stab myself in the eye, all the way through , and or my neck.
I just think that alot of this stuff is really bad for you, and I do wonder what it is doing to my body.
I just want to be normal. Hey does anyone know what normal is?
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss