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EDS temperature problems legpain fatigue infection

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#1 Scotty

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Posted 24 October 2013 - 02:23 AM

I am waiting diagnosis of my sleep problem and wondered if any others had similar symptoms and history. I suffer constant fatigue and lack of energy, after years of sinus & chest infections, now controlled by antibody transfusions (IgG). However having been a person who was constantly tired in the past, ( always put down to the side effect of these infections), now every day for the past 8 years I hit a walls of tirdeness during the day (EDS?) which starts with weakness then pain in my legs and a feeling of being cold. I then just have to lie down and sleep instantly for a few hours. This also happens when attempting 'new' social events, I become aware of my apparent temperature dropping and then the wall of tirdness approaches. I also can have problems with apparently overheating......so I can be too hot or to cold. Anyone out there with the 'temperature' , 'leg pain/weakness' then 'must sleep' symptoms?
Thanks

#2 3.8jake

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Posted 24 October 2013 - 11:16 PM

I can get seemingly random super hot (profuse sweating, face and neck fee's like its almost sunburned) and cold spikes (really bad shivering) when anyone else in the room is no where even close to being that hot or cold.  There has been times when I'm feeling "off" and if the room temp is just right then the urge to sleep is severely worse then any other daily "sleep attack" period.  I had annual sinus/chest infections growing up.  I'm thinking at least once a year around the same time from 10 to 18 I needed a prescription to fight them off.  The temperature issue's didn't start until late 2012 and the stiff legs/pain/weakness around the same time but just about every muscle can and has ached.  This last month my legs have been the favorite to being stiff/dull pain with one day every muscle ached/stiff (except my right arm which was strange as my left arm was really really bad, far worse than the other muscle groups, which is a new one) and was crazy tired no matter what medications took to fight it off.



#3 Scotty

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Posted 25 October 2013 - 04:06 AM

Thanks to 3.8jake for your reply, much appreciated. I understand from some recent medical papers that EDS & N can be caused by the effect of sinus infections, which I believe is what has happened to me.
I currently take a codeine based painkiller for the muscle pain, but hope to get help with medication for EDS symptoms if I can get a clear diagnosis (appointment with Neurologist/sleep consultant this Tuesday29th oct) . I am keen to try Modafinil but here there has to be a clear diagnosis before being given this medication.
Any others with EDS/temperature problems/leg weakness & pain?

#4 sk8aplexy

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Posted 25 October 2013 - 11:53 AM

You may find it interesting to note, there has been a lot of research more recently into the association of histamine levels in Narcolepsy.

Persons with Narcolepsy seem to have 93% more histamine than the normal person without Narcolepsy.

They think perhaps it is a response of the lack of hypocretin (orexins) or perhaps the excess histamine is related to causing the lack of hypocretin (orexins).[?]

Here's a link on such: http://newsroom.ucla...man-247169.aspx

 

As for body temperature, there is also something to be said relating to Narcolepsy:

http://www.scienceda...80201085700.htm

http://www.ncbi.nlm....pubmed/17162991

 

Leg weakness and pain, I can not provide any link or more on. 

Besides, perhaps the possibility of Cataplexy, if you specifically mean weakness (not pain) in relation to being excited/laughing, emotion triggered that is...?

 

The suggestion I can make, is try to eliminate your allergies.  This is near impossible, I know. 

But, if you are not taking measures to avoid them, they can cause serious never ending symptoms; that was my case before doing a lot of lifestyle adjustements to help minimize the constant headaches/sinus congestion/asthma like symptoms/even energy to some extent...

Some of what I did to help was avoid certain environments (I live in the midwest which is one of the worst places on the planet for suffering from typical allergies) at times, making sure that I change clothes/bath/irrigate nasal cavities after being out in the woods or (practically outside, yet not to that extreme) where ever I was 'really' subjected to many allergens, keeping windows shut when the seasons are intense, keeping the cats out of my room...  I know definitevely that the above has been hugely beneficial, because if I try to go camping, before it gets to being night typically, the headache (that I used to live with) begins to hit (it's a dull ache between my eyes and neck), on top of that during the night as I try to sleep, the congestion hits causing my nose to clog up and my breathing becomes more difficult (as I've become a nasal breather, near entirely).

 

Then there's eating.  Diet, eliminating Glutens because I'm allergic to wheats, rye and barley made a huge difference, but it took a while for it really to be note-able, but then it really was as the headaches/congestion and what not, was much lesser.  Then, I eliminated Dairy as well, and wow, the asthma like symptoms dissipated. 

Such above requires basically that I cook near everything that I eat.  Such was not necessarily easy, took gradual adjusting with some major moments of frustration and/or desires for cheese especially, but now over a year plus, I'm so much better off.  I find cooking soothing usually, and I really enjoy eating what I want to eat and knowing what is within; it's always an expirement but I enjoy it, typicaly. 

The above has actually practically has eliminated my Cataplexy too, which was severe, with collapsing frequently from laughter and being asked for change on the street...

The best of luck.



#5 veramoco

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Posted 10 November 2013 - 10:54 PM

Lost and confused and in need of help. For many years I suffered from true depression and anxiety disorders until about a year ago. The problem with having had these issues in the past is that automatically it's assumed that all is the same thing always and after trying so many different psychiatric meds and failing at them all I have now gone to a sleep clinic. Currently I've been told that I have sleep apnea but even with the machine I still don't feel well. The doctor has me scheduled for a 24 hour study to see if I have narcolepsy but I have to wait two weeks before this and I'm doing really bad.

Every time I feel nervous I either have these strange seizure like symptoms where I start nodding off (like absence seizures), to losing balance or fully collapsing on the floor. Usually when I fall flat out it lasts me up to 5 minutes and I feel like I'm being pinned to the ground so paralyzed I feel. Even my neck and face muscles stop working and I am unable to indicate that I am aware of my sorroundings because of my inability to speak during those spells. Sometimes even laughter can do the trick but more often then not it's related to stress. My head just starts spinning and on the floor I go. Luckily I have a few seconds to realize what is happening and so far I've survived my falls by grabbing a pillow if im on the laptop. Usually if I'm active nothing happens. It's always when I'm doing nothing more then having a conversation, reading or watching a movie. I'm feeling depressed yes but only because of how horrible I sleep at night, how tired I feel like a walking zombie during the day, how horrible my headaches get and these strange falls. Then there are the odd times where I thought I saw something that is not real, hummm. People make me feel embarrassed in public because I can't explain what is wrong with me. I wish these tests could come faster because I'm just terrified of another fall. Unfortunately while I was on psychiatric pills it was hard to tell what was really wrong because those meds can also alter mood, and then there was the assumption that I was having seizures. It's been a year and I just want answers. Does my symptoms sound anything like narcolepsy and is there a specific test done through mslt that will diagnose this? Thanks.

Vera



#6 Ferret

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Posted 10 November 2013 - 11:20 PM

Have you told your Doctor what you are experiencing? Do you have a witness to your collapses? Both are important to your diagnosis. The sleep study will confirm the Narcolepsy but, I'm sorry, I believe you also have Cataplexy. Please follow your Doctor's instructions regarding the sleep study and, if he has not already told you to discontinue or start to wind down on any medications that you are currently taking, please ask him why not.

You MUST talk to him about the meds and you CANNOT just simply stop taking some meds.

I know you feel like crap but you've waited long enough and you want it done correctly with definitive results.

The Cataplexy doesn't show up on a sleep study but is very diagnostic. If you have a witness, please take them with you to your next appointment.

Best of luck. It's not easy being in limbo and, hopefully, you'll get everything sorted out soon.



#7 Hank

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Posted 11 November 2013 - 11:32 AM

Ok- here is my two cents. Your experience is similar to mine.

 

- make sure your doctor is a Neurologist who is fellowship trained in Sleep Medicine. If not, consider changing doctors.

- if your doctor is a Pulmonologist, understand that most of them do not understand Narcolepsy and will focus on sleep apnea

- if you are on an Antidepressant, understand that the alter sleep architecture by suppressing REM sleep. Unless you discontinue those medications, you will never meet the test requirements (2 sleep onset REMs) for Narcolepsy. Depending upon your doctor's experience, he or she may not know this is a concern.

- you would be better off delaying your tests to find the right doctor and clear any REM suppressing medications from your system.

 

In my experience, every invalid test and wrong diagnosis added to the confusion of what was wrong with me. Getting it right once is better than getting it wrong several times. This is your chance to do it right.  

 

You have described your symptoms very clearly. A Neurologist who is board certified in Sleep Medicine and familiar with Narcolepsy will likely suspect N. A doctor who is unfamiliar with N will never suspect it. Doctors like to diagnose what they know (whether or not you have it).

 

I know your head is cloudy and foggy. You are anxious and confused and need relief from this. You need answers and you are scared. Do not allow any of this to push you into hasty decisions about your choice of doctors.

 

It is better to wait for the right answer than get the wrong answer quickly.



#8 Ferret

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Posted 11 November 2013 - 12:19 PM

Very clean and concise Hank. Way better than my response and worth way more than two cents.



#9 ironhands

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Posted 11 November 2013 - 12:27 PM

Making sure you see a neurologist should be the #1 priority.  I was sent to a pulmnologist after mine who completely ignored the 8 minute REM latency on my PSG.  Saw a neurologist a few days later after pitching a fit who saw the signs immediately.  That was 3 months ago, another 3 months till I get the MSLT I should've already had, and a month past that till I get treatment, unless my appointment tomorrow can get me something in the interim.

 

Making sure you get the right doctor, is extremely important.  I'd have been diagnosed years ago if my doc didn't just dismiss it as "depression"...  Comes down to that saying "If all you have is a hammer, everything is a nail".  A pulmnologist will see it as an apnea issue, even if the PSG shows it being low, a shrink will see it as psychological, and a GP will see it as "you're too fat, eat better and excersize".



#10 Hank

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Posted 11 November 2013 - 01:41 PM

So many of us are a puzzle that most doctors will never solve. We are like a Rubik's Cube to most doctors- they can line up one side but not the others. Until we find the right doctor (starting with the right qualification and experience) we will have different parts of the puzzle solved but never the whole thing.

 

Each wrong answer is made with confidence while the rest of the puzzle is ignored. Either we stumble across the right doctor or we seek them out- unfortunately that is our reality. At some point we either just accept the wrong answers or we find the grit to stop accepting the wrong answers.

 

When my puzzle was finally solved I was left with deep regret at having believed the wrong answers for so long.

 

Depression- antidepressants help with our co-morbid depression and relieve cataplexy but don't relieve the sleepiness

ADHD- stimulants relieve our sleepiness but don't remove the fog and cataplexy

Diet, exercise and a sleep schedule- improve symptoms but don't eliminate them

Sleep medications- give us relief from fragmented sleep but don't relieve our excessive daytime sleepiness

Sleep apnea treatment- relieves disrupted sleep but does not eliminate EDS

 

 

If we complain too much, we get dismissed as complainers.

If we don't complain enough, the extent of our symptoms are never taken seriously.

 

We are responsible for explaining symptoms in textbook accuracy when we don't even know they are symptoms. Our baselines for "normal" are so skewed that we unknowingly live with extreme symptoms that we believe are normal for everyone. "everyone is tired- stop complaining".

 

We are so accustomed to being dismissed that we dismiss ourselves. We get so accustomed to convincing wrong answers that we accept them as right.

 

We need to become educated patients, find the right doctors, question our medications and treatment and ask lots of questions.

 

Google the Eppworth Sleepiness Scale and the Cataplexy questionnaire, fill them out and give them to your doctors.



#11 ironhands

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Posted 11 November 2013 - 02:11 PM

I experienced a lot of relief when looking into N, but I understand the frustration of being misdiagnosed all too well.

 

Hank, if there was only one drug you could take, or give out, which do you think it would be?  Obviously there's no single treatment to deal with everything, but is a stimulant the most basic treatment one can get?



#12 veramoco

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Posted 11 November 2013 - 02:40 PM

Hello again,

Thank you for all the support. It's truly a lonely road. My husband also now just dismisses these as "spells" and thinks nothing of it. He sees me suffer but couldn't care less or maybe he's just tired of trying to help me find answers and just lives with it. The other day a woman at the shoppers drug mart was complaining about how tired she was feeling and I thought, "tired? she has no idea. I haven't worked in years because I'm too tired to lift a hand even around the house. Now I have an infant. I read a lot of stories about men having narcolepsy. I guess being a woman with it is rare, I'm not sure. If that's it, that too I'm still not sure. I believe in the cataplexy is a fact but where it all fits in I don't know. This is all new for me. I only got a chance to see a sleep specialist because I was so exhausted after weeks of caring for a newborn I walked into my family doctors office and told him I'm just truly exhausted and when he insisted that I shouldn't take my small dose of valium but go back on anti-depressants I got angry at him and told him "no, don't you get it, I'm depressed because I'm tired all the time". I'm tired of being tired. Shortly after that, after continuously insisting that it's my depression that is causing this and me insisting what the neurologist said that the anti-depressants are off limits to me because of the dystonia I had developed from them my frustrations turned into my head suddenly drooping to one side, my eyes closing and a twitch and I was like in a sleepy state for minutes. So anyways, I am off all anti-depressants and have for the past year because I was getting horrible zaps in my head from them and spasms in my neck. The psychiatrist has got the point but the rest of society hasn't unfortunately. I had gone to see a neurologist and the psychiatrist was forced to take me off everything and just give me valium to help me with the side effects of getting off. When I saw the sleep specialist he told me he was only able to confirm the sleep apnea for now. I had a short episode in his office and all he could tell me is that it's either narcolepsy or epilepsy although I told him that epilepsy had been ruled out by two eeg's. However, I heard that eegs are recorded during sleep so now I'm wondering if that is why he called me asking for the phone number of the neurologist or does the regular neurologist also treat narcolepsy? I asked in anticipation to the receptionist as to ask the sleep specialist why he needed my neurologist's number. All she was able to tell me is that the results of the test are being sent to my regular neurologist so now I'm in the anticipation of wanting to know what is going on and what's next. I still have the 24 hour sleep study but I think I'm just anxious because I've been waiting for relief for a long time coming. I know I should wait things out and take each test as they come and be patient but it's so hard to be patient because now I have my baby to care for. I'm just glad that I was able to stand up for myself when I saw my physician for once in my life and get him to see that I'm not truly crazy. I used to need anti-depressants for depression but this is no longer the case. I just want to be capable of caring for my infant and that's what makes all this harder for me. I think the doctor only wants to rush the results because of the baby but it's still going to be 2 weeks before I go back. I think the two doctors are going to be discussing the results and come to a conclusion together. That in itself gives me a comforting feeling because I don't want to be drugged anymore for the wrong reasons and feel so totally gone in my mind. I wouldn't be surprised if it was the psychiatric pills themselves that messed me up. Now I just want to feel normal again. Thanks again.



#13 veramoco

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Posted 11 November 2013 - 02:45 PM

Oh yes and I've been told I definitely cannot be driving. lol. I forgot to tell the doctor I'm afraid of driving anyways. lol



#14 Ferret

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Posted 11 November 2013 - 09:55 PM

Vera, you have to stop and take a deep breath.

Diagnosis is one thing but finding the correct meds is entirely another...some work for some people and some don't work at all for others.  "Normal" is something you should take out of the equation completely because, for many of us, the most we can hope for is to feel better. It's one day at a time and one step at a time and can take a long time. It's searching for the lifestyle changes that will improve your symptoms and allow you to lead a productive life. Those can include diet modifications, strict sleep/nap schedules, meds...whatever it takes. There is no magic bullet that switches you back to "normal".

And I sure hope you were "weaned" off those meds and didn't stop them cold turkey.

And I worry about a sleep specialist who doesn't recognize cataplexy when it happens in front of him.

And all the narcoleptics that I know are female...never met a guy with it until this forum.

And I was diagnosed by a Neurologist.

And I'd really be asking ALL of your Doctors how much actual experience they have with Narcolepsy and Cataplexy.



#15 veramoco

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Posted 15 November 2013 - 12:06 AM

I didn't think that all would be normal either I just hope for it. Even with my depression I was not the way I had been before, young, youthful and energetic. I've been rundown since the age of 21. I'm 33. As for the anti-depressants I did have to get off cold turkey because I was getting symptoms of parkinsonism along with the dystonia if you know what that is. I had taken an overdose 4 years ago and now my brain is very sensitive but it could also be because they were not the proper anti-depressants for me if I'm ever able to take them again which means I may never be able to treat the cataplexy unless there is another drug to treat it. It was under the advice of the neurologist who saw me who told me that the anti-depressants would cause me long term damage if I continued taking them. I did what I felt was best in my situation. I haven't been at all suicidal since I've been off, I just wish I could sleep all day which is impossible now because I have the baby. If you see photos of me my eyes always look red and in the worst days bloodshot. I always look half asleep these days. I'm almost certain it's not epilepsy. I wouldn't be dead tired. And even when I didn't have the baby I was still dead tired but it was much easier because I could just sleep when I wanted. Now I'm lucky if I get to sleep. Some people say it works with babies because they sleep, well not mine. She keeps me up all day and the mornings are usually hell. I want to sleep, I can't. Before I had her I couldn't get to bed early enough but then to get out of bed I had to almost be pulled out. My family has always thought I was lazy. I wish. I know I was lazy in high school but since I had my first child I've been eager to be a mom. Now it seems so difficult. Luckily my husband knows that for the sleep apnea I need to use my mask so Im forced to sleep at night but yet it's like my internal clock will not shut off at night but during the day I'm a zombie. I find that I hate the cataplexy when it happens but I actually feel more energized after it passes. An hour later my fatigue returns and the brain fog is constantly there. I don't know how long I've been like this but I know I've been foggy for quite some time. There have been times I have done things and then forgotten what I did. I'm being told that I forget a lot. Too bad I forget the small stuff but not the things that bother me. lol. Is it true if untreated this condition can get worse?



#16 Ferret

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Posted 15 November 2013 - 07:35 AM

 

I find that I hate the cataplexy when it happens but I actually feel more energized after it passes.

I have experienced this also. For me, it's a sensation at the back of the head where the skull meets the spine and a tightness in the jaw. I know that "something" is going to happen during the course of the day and I wait. When it happens, it's like a logjam clearing a river and water flow can start again.

 

Is it true if untreated this condition can get worse?

 

It did for me but I think you may already be at the worse part. In other words, there's no place to go but up. I've levelled out considerably...and you will too! Getting off the antidepressants cold turkey has given you rebound cataplexy. Please trust me when I say it WILL get better now.

Xyrem is also for N with C.

 

One step and one day at a time. Think positively!



#17 Kimpossible

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Posted 15 November 2013 - 05:15 PM

Scotty, I have antibody issues too.  I actually lack IgG4 which is what signals IgE to start an allergic reaction.  I don't have allergies.  I have always suffered from sinus infections though which is what prompted my doctor to check my antibody levels.

The possible link of people with narcolepsy and increased amounts of histamine is really interesting.







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