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Message board for narcoleptics, friends and family. Ask/answer questions...or just get it off your chest.
God's Country
by
(no login)
GEM and Phil
Why does God allow the whole family of mosquitoes to live in the Pacific Northwest? Not prepared with bug spray my first couple of days, I have woke up nightly scratching my legs and arms from dozens of bites!!!! I don't remember this being a problem growing up here, especially in the summer.
Revenge is mine, say the Lord
Turn your back on mother Oregon, and she runs a close second.
If she really wanted to get even, she would arrange for you to spend a month during deer season,in
Chemult, Or. You would think you were loosing weight, until they rushed you 70 miles to the hospital for 2 units of blood.
By the way - I spent 20 years in Chemult. There are only two things that grow in Chemult,
Kids and Rumors!
I remember being impervious to mosquitoes every time I was pregnant, Pam, you could try that.
something about the estrogen levels and the fact our blood did not make good egg laying for them. I felt so bold, standing outside in the dark letting them bounce off me! Not one nibble
I don't have a problem here in this part of Oregon but did when I was visiting my sister. I found a lotion with actual lavendar oil in it (not just lavendar scented but in the list of ingredients actual lavendar oil) and put that on twice a day.. no more bites. I was attacked so much I had to go to the doctor .. to go from that to nothing is pretty good. I keep that lotion with me whenever I visit my sister now.. lol.
We used to joke that the mosquitoes in MN were large enough to carry off toddlers and small dogs.
I remember when we used to visit my gramma's house on the lake, there were three things to watch out for. The mosquitoes, horse flies and the sun. In that order lol. They were so bad that the city used to spray for them in the summer, you couldn't go outside or open your windows for hours.
We left Lewiston yesterday with our 10 year old granddaughter, Emily. We only drove 150 miles to just outside Hermiston, Oregon, there is a large beach and camping area, we got there about 1 pm. It was over 100 and we swam for about six hours. My sunscreen was not waterproof and Emily and I got pretty good sun burns, not good for me, with a history of skin cancer. However we had a great time. I'm in the pick up now and we are on our way to Hood River. We are going to stop and spend the night in North Bonneville, Washington, just over the "Bridge of the Gods" and see some friends that stay in the same RV Park in Arizona. They forgot their potted flowers so I have been taking care of them since we left Arizona. After spending the night we will head for Portland in the morning. I really love my Verizon Broadband, I have internet anywhere my cell works. We are stopping in Boardman for our usuall ice cream cone stop. Yumm............
How about something good going on in your lives, share a smile.
Growing a garden is a lot of work, but it has its moments. Sometime in the next few days I will place a steak on the grill, or a London broil on the spit. 12 minutes before we eat I will pick the first of our corn, boil for 11 minutes, and indulge! I may even forget the beef.
Well, my son is on leave for 6 days :) .. got home yesterday. He asked me if I wanted to go see the new Harry Potter movie with him this weekend.. so not only do I get to see my son, I have a date.. lol.
Steak and home grown corn..yummm.. sounds wonderful!
been busy. my provigil has slowly started restoring my life, and youth, and vitality and everything... so ive been kinda here and there, but not as much online cuz im either too tired if i have time at the end of the nite or i am too drunk lol
i am working 40+ hours a week again, doin gigs about two or three times a month, and partying.
i still have had a few bad days here and there, like one every two weeks maybe, but i really think it has to do with sometimes forgettin to take my pill around the same time or sometimes just completely forgettin to take the other half later in the day before its too late cuz i am just feeling so good anymore that i just plain forget it.
Paul, that is the best news and thank you for posting.
I am so thankful, you were one of my biggest concerns, because you are young, and this dx took you by surprise in mid-stride.
I know what you mean about forgetting and missing 1/2s of the provigil, but i think i found that taking when i remembered was a good idea, and then the next on schedule, to keep from having a C "pileup" if my serum level went low. full serum level is more beneficial than either saving the pill for another time or ...
worrying about having a double dose, and fast heartbeat/stomache ache. Because of the serum level at this time, that you are keeping enough "on board" constantly, that you will not notice the higher dose. it wont keep you awake either.
only thing i heard about nuvigil is my bro in law has great insurance, and the doc/insurer has switched him to nuvigil. more about that later (he does NOT have N)
yeah, there definitely is a C "pileup" and it really comes down hard when i slip up on remembering to take the other half of my pill. i actually never had C too too bad, unless i were goin on like 4 hours of sleep a few nights in a row, but now it seems to affect me more if i miss sleep or if i miss the pill.
i would say im still kinda readjusting to life and still pushing my boulder up hill or shifting gears whatever ya wanna say... but wow, i can go with even being half alive compared to last year where i was just the living dead and really didnt see much reason to go on if things kept up like that.
10 days ago I offered a man a ride into town (1 mile). He said no, he was out for a walk. He walked by my house yesterday, and thanked me for my offer. He introduced himself and told me he had heart surgery last year. Now he walks about 5 miles every day, and donates time 3 days per week, taking care of Old people that need help. His idea is that heaven is here in all the beautiful things that surround us, and we do not see. He believes that we should leave as small a footprint on the earth, and anything that we leave behind should be left to advance children and those who can't help themselves. He is in his late 60's, and I hope he has a long future ahead of him.
I would list him as a hero!
Yes and a hero does not need to be compared to the lowest common denominator, to look good to me!
in my advanced age, i just steer away from users and takers, bu11sh1tters and particularly narcissists who live in their own little universe.
sorry for venting, Jim is dealing with his incredibly obtuse family today. they wanted his help with renovations and landscaping, in weather topping 115 degrees. if he comes out of this alive, i will promise myself the pleasure of bitch slapping someone someday.
just an example: one day i was earnestly trying to talk NICELY to one of them (the thickest sibling). i mentioned that he was pretty sick with a malaria relapse for a few days... blank stare... and i said "from viet nam."
she says, "oh he was never in viet nam".
at this point i turned my face blank and dropped it. i guess his FUNERAL ( he was a POW and they goofed and visited the family IN BIG BRIGHT UNIFORMS,) complete with caissons or whatever and guns firing... you know dingbat, when all those people in black stood around a GRAVE FOR CRYING OUT LOUD.... oh never mind.
right now the whole world is crying for a druggie musician, and my hero husband is boiling his brains...
anyway, every time i view some husband/wife, son/daughter, father/mother who is stunningly spoiled and demanding, even with people going hungry around us,
i think "I have 2 words for you, Hon. Homeless Shelter."
they need to either work in one or live in one to get their heads out of their
WASHINGTON (Reuters) - People who are obese but otherwise healthy may be at special risk of severe complications and death from the new H1N1 swine flu virus, U.S. researchers reported on Friday.
They described the cases of 10 patients at a Michigan hospital who were so ill they had to be put on ventilators. Three died. Nine of the 10 were obese, seven were severely obese, including two of the three who died.
The study, published in advance in the Centers for Disease Control and Prevention's weekly report on death and disease, also suggests doctors can safely double the usual dose of oseltamivir, Roche AG's antiviral drug sold under the Tamiflu brand name.
"What this suggests is that there can be severe complications associated with this virus infection, especially in severely obese patients," said CDC virus expert Dr. Tim Uyeki.
"And five of these patients had ... evidence of blood clots in the lungs. This has not been previously known to occur in patients with severe influenza virus infections," Uyeki said in a telephone interview.
Nine had multiple organ failure, which can be seen in influenza, but five had blood clots in the lungs, and six had kidney failure.
How can I stop eating at night? @ 10p and when I wake up in the morning with the fibro pain... and it's gotta be sweets usually too. No wonder I feel like a balloon.
he European Commission says it has launched anti-trust investigations into drugs firms over costly delays in introducing cheaper generic drugs.
Among them is the French pharmaceutical firm Servier, suspected of colluding with several makers of generic drugs.
The Commission says it has found a gap of more than seven months between patents expiring and the appearance of generic drugs on the market.
The delays push up healthcare costs in the EU, the Commission says.
"We must have more competition and less red tape in pharmaceuticals," EU Competition Commissioner Neelie Kroes said on Wednesday.
Her team has produced a report on generic medicines, which says drugs firms are using "a variety of instruments to extend the commercial life of their products without generic entry for as long as possible".
The Commission says the delays matter because generic drugs are generally 40% cheaper, two years after market entry, than the original patented drugs.
Plea for EU patents
Drugs firms defend their actions by pointing to their considerable investments in research and development - necessary to test the reliability of new drugs.
France's Servier makes the cardiovascular medicine perindopril. The commission suspects it struck a deal with several generics firms: Krka, Lupin, Matrix, Niche Generics and Teva.
The EU report also stressed "an urgent need" for an EU-wide patent system and "unified specialised patent litigation" in Europe.
It criticised the wasteful duplication of patent court cases in EU member states, noting that in 11% of such cases national courts "reach conflicting judgements".
Generic drug companies - which sell cheaper versions of drugs once the patent has expired - have long complained that it is difficult to get their drugs to market in Europe.
The Commission can impose large fines on drug companies if they engage in anti-competitive practices.
In 2005, AstraZeneca was fined 60m euros for blocking cheaper rivals to Losec, its heartburn and ulcer pill.
The Commission says it is also examining why there is "a decline of novel medicines reaching the market".
The British Generic Manufacturers Association (BGMA) welcomed the EU findings, saying the delays "increase NHS [National Health Service] costs without any benefit to patients and limit access to medicines".
Generics account for 64% of all medicines dispensed by the NHS, yet they cost only 29% of the NHS drugs bill, the BGMA says.
The average cost to the NHS of a generic drug is £4.62 (5.3 euros; $7.5), compared with £20 for a branded medicine, the BGMA adds.
NEW YORK (Dow Jones)--Shares of Jazz Pharmaceuticals Inc. (JAZZ) jumped as much as 62% Thursday, a day after the drug company said preliminary results from a second Phase III clinical trial of its fibromyalgia treatment backed positive results from its first study.
Shares were recently trading at $4.83, up $1.58 or 49%. Shares have quintupled in June, but they're still well off their 52-week high of $8.95 from June 2008.
The company has been developing sodium oxybate - which is currently marketed as Xyrem to treat narcolepsy - to be used for the second indication of fibromyalgia treatment. Sodium oxybate hasn't been evaluated by regulators for the treatment of fibromyalgia and isn't approved for this use, but the company said it intends to file for Food and Drug Administration approval by the end of the year.
Jazz said in a release Wednesday that the drug showed meaningful improvement in treating the pain and the main symptoms associated with fibromyalgia, a chronic illness characterized by widespread pain, unrefreshing sleep, chronic fatigue and psychological distress.
"These results were very strong and confirm results from the previous study," Leerink Swann analyst Gary Nachman told Dow Jones Newswires, adding that the results mean there's a good chance Jazz could get an expanded indication approval for fibromyalgia. "This is really the only thing the company's working on in its pipeline, so it's an important milestone for the company."
He said that the fibroymyalgia market is large, about $1 billion based on what some other companies have said. Nachman said Jazz's drug would likely be more of a "niche product," as distribution for Xyrem for narcolepsy is restricted.
He added that Xyrem currently generates about $60 million, and Nachman believes with the additional indication for fibromyalgia could bring in about $100 million.
A representative from Jazz wasn't immediately available to comment Thursday.
Jazz has been plagued by a heavy debt load and weak liquidity. As of March, the company was in default on $119 million in debt and was burning through its remaining cash, hoping cost cuts and sales growth from its two marketed products would enable it to survive.
Leerink's Nachman said that while the results are promising, the drug isn't the answer to all of Jazz's problems.
"The data is very positive, but people just have to put it in proper context with what the company is going through," Nachman said. "The company still needs to find some additional money."
Nachman said Jazz needs to find partnerships for the other projects in its pipeline that have been put on hold.
He added that the company hasn't been making interest payments on its debt, so it could possibly face bankruptcy at some point.
"Debt holders have been giving them some slack, but that's certainly a priority for the company right now to solve this issue," Nachman said. "Having this positive data might help buy them a little time, but it's not the solution right now."
I got a letter from my doctor confirming that I was positive for the HLA marker I mentioned earlier. The lab also tested me for HLA-DB15...I was positive for that as well. I was wondering if anyone knows how common it is for someone to have both of the markers? I know both are used to test for N, so how common would it be in someone in the general population?
My math (the way I decided it should work) is probably wrong but if a fifth of the population have one marker and a fifth have the other, probably a twenty-fifth have both? 1/25 people may have both as opposed to 1/5 having one. So like, four percent (4%) of the population would have both. That seems about right?
The extra marker they tested me for was HLA-D*R*15. Glad you all caught on and knew I was talking about one associated with Narcolepsy still =D
Even knowing the right maker, I still can't find much information on the percentage of people who actually could have it, every information says it's linked to narcolepsy though....
i know, right? all i can find are stats that say the % of people with the markers who have narcolepsy cataplexy and without.
This site says 24% of people have both markers and don't have narcolepsy at all.
http://emedicine.medscape.com/article/1188433-overview
It also says 76% of the people who are positive for both markers and have narcolepsy have cataplexy as well. But it does not say how many people actually have both markers in the first place have narcolepsy. I guess that would be 76% of the total amount tested if 24% have both markers, but no narcolepsy at all.
We got the blood test results back from my doctor. I'm positive for the HLA marker HLA-DQB1*0602.
I know it's not a diagnosis, because approx. 20% of the general population carry it. But it's one step closer than we were before. Now, talking to Stanford about the spinal, to see if they still want us to do it here or try at least.
At this point my appointment is still in October, so we're still just waiting.
The stat I gave about 20% of the population having that marker?
Well, over 90% of people with Narcolepsy w/Cataplexy have this marker.
However, it hasn't been determined if people with Narcolepsy WITHOUT Cataplexy have this marker or not, so it can't be used to diagnose the disorder, just tell if it's possible to have it.
I thought I'd throw up that in case anyone was wondering =D
The first: Incomplete study due to me having an episode and freaking out the tech.
The second: I fell asleep withing 13 minutes of each of the 5 naps, but didn't achieve REM sleep for any of the 5. I was only off my meds (15mg over 10 hours Daytrana patch) for 2 1/2 days before the study. The hospital I had it done at recommends 2 weeks minimum in the description of the study. Things were rushed to provide results, which may have skewed the results.
So the two sleep studies/MSLTs I've had don't support the Dx of Narcolepsy w/Cataplexy, but neither have been done correctly, and both at pediatric hospitals.
Also, EDS has never been my strongest symptom. It's gotten progressively worse, but never been major.
yeah, you will probably have to get another one and make sure it is done correctly...meaning get off your meds for 2 weeks and try to get it done in a better sleep lab. the SOREM (sleep onset REM) patterns confirm narcolepsy vs. idiopathic hypersomnia.
I know we need another MSLT and sleep study, but wouldn't the presence of attacks of loss of muscle tone (assumed to be cataplexy at this point) rule out IH?
Like I said, EDS has never been my strongest symptom, Cataplexy has...in fact, if not for the cataplexy starting, it may have been a while before we noticed a problem. My parents said that back before the attacks started (when I was 15) I was often coming home and sleeping for 3-4 hours, and occasionally through to the next day, or would fall asleep before school started. But I've only once ever falling asleep in class, and don't have such bad EDS that it interferes with my classes or conversations with people.
i would think that it would rule it out, but for the formal diagnosis, they will only go by the mslt. i am not sure exactly why.
you are at the point i was at about 17. hopefully you get diagnosed and start on the proper meds before it gets any worse.
i didn't get diagnosed until i was about 33. when i first had cataplexy and EDS, i was diagnosed with petit mal seizures due to an unknown cause. the dr. didn't even care about the EDS. shortly before i went to the dr. for the cataplexy, i had gained about 45 lbs. this is after being skinny and small my whole life. then the dr. sits there and says everything is due to my weight, and he just says i need to lose weight.
Hi Pam, how are you doing on your meds? I sure hope they help with some of the problems. Its amazing how a little help can improve our outlook on life. I sure hope that things continue to improve.
Court frees woman who stabbed Chinese official
By GILLIAN WONG – Jun 16, 2009
A Chinese woman who became a folk hero after fatally stabbing a Communist Party official to fend off his demands for sex was freed by a court Tuesday, a decision that likely avoided a storm of public criticism over the carefully watched case.
Deng Yujiao, 21, was accused of stabbing the official with a fruit knife and injuring his colleague when the two inebriated men cornered her one night last month at the hotel she worked in as a karaoke bar waitress. Her popularity reflects widespread anger in China over abuse of power by communist cadres, officials and the security forces.
The Badong County People's Court on Tuesday found Deng guilty of causing injury with intent but spared her from punishment, bowing to popular support for a woman portrayed by many as a hero for lashing out against injustice.
Grass-roots civil rights activists had trooped to Badong in recent weeks to show their support for Deng, and her case sparked a flood of supportive postings on the Internet. Coverage of her case in the entirely state-controlled media was unusually sympathetic.
Posts in online forums called Deng "the best girl on the planet," composed lines of verse in classical Chinese that described her as "beautiful and fierce" and dedicated the lyrics of a popular love song to her.
A group of Peking University students last month staged a demonstration in front of a Beijing office building in which a woman wearing a face mask and bound from neck to feet in white cloth lay on the ground next to printed Chinese characters that read "Anyone Could Become a Deng Yujiao."
A similar public outpouring of sympathy followed the case of a man who confessed to killing six Shanghai police officers last year in revenge for allegedly being tortured while interrogated about a possibly stolen bike.
The official Xinhua News Agency said the court ruled that Deng should be spared punishment because the injury resulted from excessive force used in self-defense and that she had limited criminal responsibility because she was manic-depressive.
Another mitigating factor was that she turned herself in to police after the May 10 stabbing, Xinhua said.
Xinhua cited police as saying she used a fruit knife to stab Deng Guida, 43, when he and a colleague tried to force her to have sex with them for money.
Deng Guida, who ran a local government office for business promotion, died later; his colleague was slightly hurt. The two Dengs are not related.
Calls to the court and the woman's lawyer rang unanswered. Press photographs showed Deng grasping her mother's hand as they left the courthouse after the trial.
A Beijing-based lawyer and legal blogger, Liu Xiaoyuan, said the flood of public sympathy Deng received pressured investigators to pursue the less grievous charge of intentional injury instead of murder. But he said she should have been acquitted even of the lower charge.
"Imagine a woman who is being harassed by two drunk men. Is she only limited to resisting using her bare hands? Can she really stop the two men?" Liu said. "Even if her resistance with a knife led to the death of one man, her behavior still falls into legitimate self-defense."
Avant-garde artist and government critic Ai Weiwei, who felt the court's ruling was unfair, said the support that Deng's case was able to inspire posed a serious challenge to the government's leadership.
"On the one hand, in the face of public pressure, they know they can't punish her because that will cause unrest," Ai said. "On the other hand, they want to reaffirm the authority of the law and they don't want to be laughed at."
On a popular Internet forum, a posting under the user name "Red Sunshine" called the verdict "a victory for the online citizens and for public opinion." Another comment read: "Our sister was found guilty in the end, and all of us are still people without any rights."
Chinese media reported that Deng Guida found the waitress in the laundry room of the hotel spa, a few floors below the bar where she worked, and demanded sex. When she refused, he allegedly forced her down on a couch and blocked her from leaving. She attacked him with a fruit knife she had in her bag
Court frees woman who stabbed Chinese official
By GILLIAN WONG – Jun 16, 2009
A Chinese woman who became a folk hero after fatally stabbing a Communist Party official to fend off his demands for sex was freed by a court Tuesday, a decision that likely avoided a storm of public criticism over the carefully watched case.
Deng Yujiao, 21, was accused of stabbing the official with a fruit knife and injuring his colleague when the two inebriated men cornered her one night last month at the hotel she worked in as a karaoke bar waitress. Her popularity reflects widespread anger in China over abuse of power by communist cadres, officials and the security forces.
The Badong County People's Court on Tuesday found Deng guilty of causing injury with intent but spared her from punishment, bowing to popular support for a woman portrayed by many as a hero for lashing out against injustice.
Grass-roots civil rights activists had trooped to Badong in recent weeks to show their support for Deng, and her case sparked a flood of supportive postings on the Internet. Coverage of her case in the entirely state-controlled media was unusually sympathetic.
Posts in online forums called Deng "the best girl on the planet," composed lines of verse in classical Chinese that described her as "beautiful and fierce" and dedicated the lyrics of a popular love song to her.
A group of Peking University students last month staged a demonstration in front of a Beijing office building in which a woman wearing a face mask and bound from neck to feet in white cloth lay on the ground next to printed Chinese characters that read "Anyone Could Become a Deng Yujiao."
A similar public outpouring of sympathy followed the case of a man who confessed to killing six Shanghai police officers last year in revenge for allegedly being tortured while interrogated about a possibly stolen bike.
The official Xinhua News Agency said the court ruled that Deng should be spared punishment because the injury resulted from excessive force used in self-defense and that she had limited criminal responsibility because she was manic-depressive.
Another mitigating factor was that she turned herself in to police after the May 10 stabbing, Xinhua said.
Xinhua cited police as saying she used a fruit knife to stab Deng Guida, 43, when he and a colleague tried to force her to have sex with them for money.
Deng Guida, who ran a local government office for business promotion, died later; his colleague was slightly hurt. The two Dengs are not related.
Calls to the court and the woman's lawyer rang unanswered. Press photographs showed Deng grasping her mother's hand as they left the courthouse after the trial.
A Beijing-based lawyer and legal blogger, Liu Xiaoyuan, said the flood of public sympathy Deng received pressured investigators to pursue the less grievous charge of intentional injury instead of murder. But he said she should have been acquitted even of the lower charge.
"Imagine a woman who is being harassed by two drunk men. Is she only limited to resisting using her bare hands? Can she really stop the two men?" Liu said. "Even if her resistance with a knife led to the death of one man, her behavior still falls into legitimate self-defense."
Avant-garde artist and government critic Ai Weiwei, who felt the court's ruling was unfair, said the support that Deng's case was able to inspire posed a serious challenge to the government's leadership.
"On the one hand, in the face of public pressure, they know they can't punish her because that will cause unrest," Ai said. "On the other hand, they want to reaffirm the authority of the law and they don't want to be laughed at."
On a popular Internet forum, a posting under the user name "Red Sunshine" called the verdict "a victory for the online citizens and for public opinion." Another comment read: "Our sister was found guilty in the end, and all of us are still people without any rights."
Chinese media reported that Deng Guida found the waitress in the laundry room of the hotel spa, a few floors below the bar where she worked, and demanded sex. When she refused, he allegedly forced her down on a couch and blocked her from leaving. She attacked him with a fruit knife she had in her bag
One of the lawyers, Xia Lin pleaded to his media contacts to collect any evidence from Deng’s mother. The video soon displayed scenes from Zhang Shumei’s home, and found Zhang was not there. The neighbours claimed she had come home with police officers at 4:00pm and then left with them. The lawyers and reporters hurried to the police station and found Zhang Shumei there. It was found however that all the evidence, which Deng’s mother had managed to keep for 11 days, was washed and cleaned by officers that night.
On June 16 the Badong County Court of Hubei Province issued a statement that declared Deng Yujia’s “freedom has been legally, fully restored.” Within 48 hours, that freedom had been taken away once again, although the Chinese people have been told she is free.
In a tape recording of a conversation of a blogger with Deng’s mother, the mother says Deng is now being held in a psychiatric hospital.
Blogs are opening up the hidden places, where "politically correct" western readers have never been. (This is driving countries like Korea and China, and some Arab Emirates crazy.) Word is getting out.
To our mind, this story of the girl in China seems indefensible, but add some social and historical things to it: a powerful and wealthy man, probably as Phil said indulging in hurting women, has a lifetime of experience using anyone who is not powerful enough to be any threat. No legal or moral consequences were ever going to happen to him. Contempt and aggression against any woman he saw would make where she was, and her job, immaterial.
Accusations of prostitution were the first justification that came to mind when this happened; she stepped out of her "place" defending herself against prominence, power and wealth.
On and on, police malfeasance to cover up (in front of world scrutiny), plus whatever official level of authority that put her safely away in a mental institution, is suddenly more about "cleaning" this up before the world, than taking any substantive measures to change the order of things in China.
Personally, I dont believe one damn thing that comes out of "official China". They have ALWAYS reported things as they knew they SHOULD be. (or rather as they understood other peoples' moral code). They consider human rights as "meddling", and still wanted the world to love them and spend big buckaroos there in the Olympics.
i have had N from an early age at 8yo.
I have also had Cataplexy syptoms from this early age.
It's always been what i could label as mild C attacks.
I would have the drop of the jaw at the worst and this would happen very rarely. Mabye my meds prevented C being as bad as it wanted to over the years?
Ok,nowaday, just in the last month or two have i noticed the C attacks becoming more frequent and more severe as my chin hits my chest.
Just wondering if i could get worse C attacks as i get older.
Or is this latest bad run due to bad diet,ect..?
Hopefully i return to having a C attack rarely often and hardly noticeable as once b4.
There is no correct answer to that question. As you get older it could get worse. We who have
N. are at the mercy of the fickle finger of fate. There are few sure answers, and no guaranty.
After 40 + years, its getting me down.
There is nothing set in stone when it comes to our disorder. I am sixty now and my cataplexy is the worst it has ever been. Some say it gets better. It all just depends on the individual. I would think symptoms would continue to get worse, given the number of hypocretin cells that are continually distroyed.
I have to admit that my N. is not as severe as most of the people that post here, and I feel very fortunate. I do admit that some days are not as bad as others. In 42 years of living with this condition I have never experienced "remission", nor do I have "good times" free from N.
I did notice some relief since I married a couple of years ago.
I cannot emphasize enough, we are not "self-serving" when we choose a better environment, with more supportive and loving people. This can make everything better:
better than the chaos and abusive person who could render me completely helpless with C, and terrible HH and brain fog;
better than being alone.
as for remissions, I was not diagnosed yet, when I had babies, and those times were pretty good (re. C and N)
but I was a lot younger
on the opposite side, bad times come and go, it has not all been decline.