Monday, February 29, 2016

Form of baclofen works better at treating narcolepsy

Form of baclofen works better at treating narcolepsy: Neuroscientists at SRI International have found that a form of baclofen, a drug used to treat muscle spasticity, works better at treating narcolepsy than the best drug currently available when tested in mice.

Friday, February 19, 2016

Experiencing Narcolepsy

PWNs experience NC in many different ways with various symptoms.  I have been to many Dr appts where I was asleep most of the time I was there.  It might have looked like I was drunk because I was staggering around, slurring my speech and having problems concentrating.  It's especially worse.  Now I make sure I take something warm because cold temperatures will make me go to sleep.  Warm temperatures keep me awake.  Sometimes I will open my bedroom window when it's 30 degrees outside because I'm too warm.

What do I do?  I have to record my appt before my appt - describe my symptoms, what I need help with, etc - because it might not be comprehended from my speech while I'm there.  You might say - take an advocate.  That works well if the person I take is familiar with my condition.  The best advocate I had has Hoshimotos.  She knows what it's like to not be able to think, have memory problems and being dead tired and sleepy.  She could understand my problems


Below is how another PWN experiences narcolepsy:

Ok so when I have one of my worst days these are things I experience I want to know what some of you go thru I get everybody is different in every case but a lot of us feel that with narcolepsy the surface is merely being scratched so I'm gonna post a normal daily list also
On a bad day:
Irritability, struggle with using my hands to do things, I struggle speaking, i.e.. shuddering finding the words to talk pauses in speaking, losing my thoughts,
Memory, my legs don't work, extreme weakness, muscles move like jello
I get that dead numb empty feeling in my parts, almost collapsing I feel as if I'm shaking though I'm perfectly still, I feel extremely exhausted more then normal, to weak to move on my own, emotional, headaches, dizzy, blurred vision, hotter then usually to where I sit in a cold shower or open the Windows, "it's winter in Wisconsin pretty cold teens and lower"
Normal day: normal tired, ok strength, typically warm body temperature, tolerable RLS, IBS, numbness due to taking glutamate along with slower speech & motor skills, always losing things,forgetting stuff constantly,
Uncontrolled muscle twitching, and dipping when walking or standing I use a cane so I usually don't fall
"A week ago I was with my boyfriend he started to slow.dance with me n my legs kept dipping as I made my way to the couch got really tired I felt as if checked out for about 5 or 10 mins and then I was fine" I think it was an attack but I'm really not sure as it doesn't happen much I just get weak knees n dip a few times and that was the worst I remember???
All I can remember right now as yesterday was a bad day but I'd like to hear what some of you others go through as this is still kind of new for me

Communicating with your doctor about Narcolepsy

The other day, I posted a question on Facebook:  If you wanted to find out if a doctor knew something about narcolepsy (not a sleep doctor but a regular doctor), what questions would you ask him/her?

One of my friends gave a really good reply.  I have posted it below.

 

I wouldn't even bother asking a doc who is not a sleep doc, and even then that gets tricky to do without offending them.

My PCP is an internist with a specialty in geriatrics. He freely admits I know more about N than he ever will and when he has a new doc in his office on an internship, he has me educate them on N.

Perhaps, Anne, a better way might be to say, "I realize that N is barely covered in medical school and if you went to med school more than 15 years ago they still thought it was a psychological problem. However, it would be very helpful in establishing our doctor-patient relationship if you'd agree to two things: 1. Be honest with me about what you do or don't know about N, and 2. Accept that I may know more than you on that subject and be willing to listen to me.

I think also, and I've done this, make it mandatory that your PCP and your sleep doc share notes after every visit to one or the other. As well, you might suggest to the primary that he talk to the sleep doc and get confirmation that you know what you're talking about. Gives you much more credibility. Alternatively, you might try getting a letter of introduction from your sleep doc that states specifically that you are a well educated patient and what you say is well informed and should be taken seriously. Come to think of it, that might even be the best approach.

Further, it *IS* important to remember that docs have worked very hard to get to be where they are, and even if some of them are arrogant bastards we still do need to recognize that they are thinking that it's pretty chutzpadig of you to presume to tell them they don't know what they're talking about. And never say "I saw this thing on the net that said...". Only say, "I read an article (on PubMed but don't include this) in such and such a journal that said..." Citing the journal is very important to establishing your credibillity. Print it out and bring it with you. I've done that. It takes all the wind out of their sails.

Thursday, February 11, 2016

To the Doctors of Chronic Illness Patients

Dear Doctor,

Unless you keep up with ALL the new information on narcolepsy or you are my sleep doctor,  I know more about my condition than you do.  What it affects, and what happens when you get it wrong.  When I write in very bold letters that my TSH is best at 2, believe me!  When I tell you I get cataplexy when it gets over 3, believe me!  When you see me walking weirdly, sort of herky-jerky, believe me when I tell you I have a lot of pain. Do you think you can believe me?

Click the post title to link to the article on themighty.com.


No Thirst

Many narcoleptics have no thirst mechanism.  I'm never thirsty even though my mouth may be parched.  I copied this from a post by Moshe Turner.

Dynorphin is co-localised on orexin neurons (but not exclusively). With the loss of orexin neurons, dynorphin levels drop. Vasopressin, which regulates vascular tone, responds to dehydration by trying to narrow blood vessels, which raises blood pressure. This process is modulated by dynorphin such that even as vasopressin neurons are receiving spiking electrical signals telling them to release more neurotransmitter, dynorphin is saying no, chill out on the vasopressin. Because lower vasopressin levels cause a person to get thirsty, the person knows to drink. Without adequate dynorphin, vasopressin levels rise and the thirst response is repressed; PWN don't get thirsty when we get dehydrated; in other words we "forget" to drink, which leads to various health problems.
In other words, drink more water!

Orexin's Many Roles

If you have narcolepsy, orexin cells are destroyed in the hypothalamus.  Orexin seems to play a role in a large number of problems in many illnesses.

Click the post title to go to the article on http://www.ncbi.nlm.nih.gov.

Wednesday, February 10, 2016

The art of asking the right questions.

Unfortunately the art of asking questions seems to be lost . There's too much assuming . How hard is it to just ask . I've gotten very thin alot of PWN are thin .  The med takes away your appetite . The other assumption because I'm sleepy and  fatigued that I don't get any exercise . I'm constantly moving it keeps me awake. I go and down stairs all day.   That I don't hurt all over just so used to it forget to mention this. I don't understand how anyone could miss . If they see me floundering trying to keep myself upright when my muscles feel weak .  Here's an area for an assumption . Wouldn't you think they would assume with all those movements I just might have alot of pain

Thursday, February 4, 2016

Physicians who profess to know something about NC.

This is a very serious problem.If your other physicians say they know about NC you can't be sure.  These are physicians other than your sleep Dr.  It makes no difference if they say they treat someone with NC . If they're a neurologist and have a few patients with NC watch out. 

They're judging your NC by their other patients with NC.  Everyone's NC is so different why oh why don't these other Drs know that?   What would have happened to me if I hadn't been diagnosed with NC is frightening . I never realized how lucky I was to have gone to Dr. G in 2001.  

Keeping up with and correcting Dr. mistakes is disheartening.  Today I just found out I had childhood ADD without hyperactivity. Since my Dad was a surgeon surprised he missed that . This particular Dr knew I had NC but he obviously didn't know enough.  No telling what he thought when I was having cataplexy during one of my office visits. He wanted to know if they needed to call an ambulance.  Why oh why can't they even get my med information right . Giving them my medical information page just doesn't seem to work .

Most Drs don't have time to keep up with current information on NC .  It's not a just a minor sleep disorder. It's a brain disease.