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Support Group In Boise, Idaho


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#1 InquiringMind411

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Posted 11 December 2011 - 05:19 AM

Hi All. My name in Andi and I live in Boise, Idaho. I'm interested in starting a support group in Boise, Idaho and would like to find out how many folks there are out there with Narcolepsy living the Boise Metro Area. Please respond to this posting and let me know you are out there. Feel free to include any information about yourself.

I was recently diagnosed in 10/2011. I was informed by the nurse at my sleep specialist's office that there are only 10 N patients there and currently no support group of any kind in the area. I thought it might be nice to be able to get to know each other and have someone to share our experiences with on a more intimate level. I don't know what experiences you have had with your doctors but let me give you an example of why I'd like to have more input from people with the same diagnosis.

I've been on Nugivil 250mg for about 5 weeks and have tried Provigil in the past with no effect. The Nuvigil helped for a few days and its helpful occasionally but about 3 days out of the week I still fall asleep on it about a hour after I take it uncontrollably and sleep the whole day. It does nothing for me. On the days I am awake, I feel a little foggy. I told my doc this (actually his NP) and she said that she's never heard that from any of her patients. She refused to make any adjustments. Now, I'm thinking "You only have 10 N patients so how can you possibly base any kind of good assessment of a medication's typical side effects or effectiveness on the reports of only 10 patients." Honestly, what kind of life am I supposed to have when the medication does nothing for me 3 days out of the week and puts me in a fog the rest of the time.

So, I'm sure those of you out there have similar stories and if we had the backing of each other and could bounce ideas of each other, we could be of great support to each other and help each other get better and more effective treatment from the limited medical community we have here as we are fairly isolated when it comes to this condition.

Thanks all. I look forward to seeing how many of us there are here in Boise.

#2 Emo

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Posted 11 December 2011 - 02:13 PM

Emo here reporting from Fort Mudge, Idaho but actually it is the Fort Boise area of Boise, Idaho. I know of two other PWN here in town and can access one of them. I tell you of a (very) often repeated joke of mine. I suspected I could not be a member of the Gulf Coast Narcolepsy Support Group because I don't have Gulf Coast Narcolepsy. I have Rocky Mountain Spotted narcolepsy. For this reason, I've claimed to have initiated the fictional group called the Rocky Mountain Spotted Narcolepsy Sport Group. The two active (heh heh) members are Spotted Emo and Spotted Jack. Jack and I live a few blocks apart but usually only meet at the national conferences!

Statistically, there should be a hundred of us in town.

Occasionally I hear from a PWN in Caldwell but every time she writes, it is to tell me she has moved out of state.

I hear that Nuvigil is an extended release version of Provigil. I found Provigil to be as effective as tap water. Methinks my reaction is not all that uncommon. I hate to tell you, but I will anyway, that NOTHING actually works very well against the Sleepiness (I don't think). But any help at all is precious.

I think Nuvigil/Provigil is the favored, first try, treatment because it is not so subject to abuse as other meds and is less worrisome about side effects. I take Desoxyn which is an amphetamine and so it is a more carefully controlled med. Didn't like Dexedrine, which was supposed to be a slow release Desoxyn. Others along this line include Ritalin.

Next big gun is XYZrem. I spell it this way because I can never remember its actual spelling. It has a good reputation I think and is effective against cataplexy while maybe not the EDS. Am I right group? I don't take it, having little trouble with C.

Ah well, this is too slow, this typing. Lets go have coffee somewhere! During the day that is. Being 74 years old is a lot worse than N and also I can't see well enough for safe driving at night. I think you can email me from this site (I'm not yet knowledgable about this place). Hit the little "Reply" thing under this email, if I've got it right.

nite nite
Ol Emo

I'm narcokleptic. I steal stuff in my dreams!

#3 InquiringMind411

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Posted 14 December 2011 - 01:03 PM

Emo here reporting from Fort Mudge, Idaho but actually it is the Fort Boise area of Boise, Idaho. I know of two other PWN here in town and can access one of them. I tell you of a (very) often repeated joke of mine. I suspected I could not be a member of the Gulf Coast Narcolepsy Support Group because I don't have Gulf Coast Narcolepsy. I have Rocky Mountain Spotted narcolepsy. For this reason, I've claimed to have initiated the fictional group called the Rocky Mountain Spotted Narcolepsy Sport Group. The two active (heh heh) members are Spotted Emo and Spotted Jack. Jack and I live a few blocks apart but usually only meet at the national conferences!

Statistically, there should be a hundred of us in town.

Occasionally I hear from a PWN in Caldwell but every time she writes, it is to tell me she has moved out of state.

I hear that Nuvigil is an extended release version of Provigil. I found Provigil to be as effective as tap water. Methinks my reaction is not all that uncommon. I hate to tell you, but I will anyway, that NOTHING actually works very well against the Sleepiness (I don't think). But any help at all is precious.

I think Nuvigil/Provigil is the favored, first try, treatment because it is not so subject to abuse as other meds and is less worrisome about side effects. I take Desoxyn which is an amphetamine and so it is a more carefully controlled med. Didn't like Dexedrine, which was supposed to be a slow release Desoxyn. Others along this line include Ritalin.

Next big gun is XYZrem. I spell it this way because I can never remember its actual spelling. It has a good reputation I think and is effective against cataplexy while maybe not the EDS. Am I right group? I don't take it, having little trouble with C.

Ah well, this is too slow, this typing. Lets go have coffee somewhere! During the day that is. Being 74 years old is a lot worse than N and also I can't see well enough for safe driving at night. I think you can email me from this site (I'm not yet knowledgable about this place). Hit the little "Reply" thing under this email, if I've got it right.

nite nite
Ol Emo

I'm narcokleptic. I steal stuff in my dreams!



Hello Emo!! So glad to hear from you! Your response was a joy to read. I wasn't sure if I'd hear from anyone at all. I'd love to chat more about your experience with N and find out what hoops you had to jump thru to stay awake. If you don't mind my asking, what doc do you see and are you happy with him/her? How many years have you had the N diagnosis? I must run for now but will hit you up later when I have more time to chat. Thank you so much for your quick response. I'm not alone out there! :-)

Andi

#4 Emo

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Posted 14 December 2011 - 06:42 PM

Jump through hoops? Nope. I seem to blunder through life and somehow come out OK. I worked for the Bell System before the trust-busting breakup. They were fearful of OSHA and so when I told them I could not stay awake when driving long distances to solve tech problems, they quick-like found me a doctor. New fellow back then. Dr. Steven Schneider. World's best GP. He didn't know beans about N but knew how to find out what was needed. Later, he even alerted me to the presence of narcoleptic people communicating over the Inner Net.

He did a series of tests to rule out a lot of things, I don't even know what all ... brain tumors ...thyroid malfunction ... fruit cake. Then he referred me to neurologist Dr. Burton (who has since expired). Burton listened to my symptoms, ordered up a polywhatchamacallit test and then said "You got narcolepsy." I said, "No." He said, "Yup." This was 1982 and he did admit that, back then, the only means for a person in Idaho to receive a truly formal diagnosis was to journey to the Mayo Clinic. He says, "Tell ya what. I'll treat you for narcolepsy and if it helps, that's what you've got."

That's what we did and that's what I've got. This diagnosis has since been verified with a spinal tap showing of a lack of hypocretin and bolstered by finding the gene PDQsomething. Stanford found these things when I volunteered to help with their research.

****** lesee. I've had N for seventy four years. Diagnosed at age 40 something.

****** How to stay a awake? Well,I just maintained employment and then retired and now I don't HAFTA stay awake.

How did I do it at work? When not medicated it warn't easy. Lots of tricks. Like you should hear about the technical maneuvers and skills required to master the "Ten Minute Potty Doze." I baffled them with mirrors and substituted brain power for wakefulness. Never made it through a company meeting but nobody knew about it and no harm was done (lots of useless talk about the "ongoing infrastructure" etc.). People just naturally observed that I drug my feet about hard work or long hours, often I seemed inattentive or disinterested, all that stuff. But then they were confounded when I got the job done anyway! 'Twas tricky.

I did not go on vacations, I just took one day off every week for as long as I had days left. Lots of little coping tricks like this.

The downside is that working 8 to 5 took all I had, so after five o'clock I disconnected from the world. This racked up two divorces before retirement.

When medicated, it warn't easy either. Didn't realize for quite a while that a person can become unresponsive to the little pills. Then you need to take more.... and more.... and more. At least it became easier to walk because my wallet was thinner. I never did find a comfortable way of dealing with drug tolerance versus wallet tolerance. That and taking medication holidays. Constant struggle.

Medication (Desoxyn) is somewhat helpful on a daily basis. I just take a smidgeon. If there is an emergency or urgent need, I will increase the dosage and expect to do quite well, for a while.

Dr.Schneider (best GP in the business) quit seeing patients and moved on to administrative work. Has a title like, Chief Medical Officer at one of those Wellness Groups. Now I go to Dr. Belzer who is competent enough to diagnose athletes foot and stuff like that, and who orders up my meds whenever I request. That's about it.

See there? Nothing here is really helpful to others. I do not try to overcome N with medication, meditation, (ugh) exercise or any other thing. I just try to find ways to get along and ways to minimize discomfort.

At least today.

Don't forget my war cry: "Blunder On!"

Emo
aka Kelly Matthews
316 Avenue D

#5 narcolexie

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Posted 15 December 2013 - 08:24 PM

Hi... are either of you still around??  My daughter and I are looking for others with N in Boise!