tjunderw

Other Conditions/illnesses You Have?

37 posts in this topic

I'm sure there is a thread about this somewhere but didn't find anything, so forgive any repeat questions!

 

I'm curious what other diagnoses people have in addition to their narcolepsy. I try not to be a hypochondriac but I have had so many physical changes and health problems I'm to the point where something has got to give.

 

Starting college in 2007, I started to get sick quite often, bad bronchial infections and the flu that wouldn't clear up for 5-6 weeks at a time. I had my wisdom teeth out then jaw surgery for TMJ/arthritic joint from grinding the cartilage out between my joints. Summer after graduating in 2011 my doctor found I had hypothyroidism and narcolepsy April 2012. Sinus infections started soon after, and one big infection after starting my Nuvigil I lost 18 pounds in 2 weeks and have continued to lose 5ish (143 to 120), I got the shingles in January and had sinus surgery this past February because most were filled with polyps or just swollen shut, all while continuing to get terrible headaches and infections.

 

On top that, my headaches/eye throbbing has yet to subside, I've become very light and air sensitive and see stars and lights, my skin goes through periods of awful pain from light touch, arms and hands tingle, my fingers/toes get hot red and swollen randomly, my face gets red and splotchy out of nowhere, my body aches constantly, I have the worst memory, started getting stomach issues, and I get holes in my gums-canker sores won't even cut it as a description!-along with the back of my mouth shedding. I also get little bumps on my skin that itch and recently had a bad reaction to Bactrim that gave me hives and tongue infection. The worst is this past week I've started to get a very frequent heart flutter...I get the random pounding palpitation in the middle of my chest that takes your breath for a moment but the past couple days it's been a few times an hour extra beats fluttering near my throat.

 

Let me just say that reading this dramatic tale would probably make me roll my eyes too, but I am willing to risk sounding a bit crazy for any information. I have looked up every autoimmune disorder and my neuro referred me to a rheumatologist when I mentioned some of these new issues. Any info you have or diagnoses you feel comfortable sharing would be great to hear...any number of these issues alone wouldn't bother me but I just turned 24 and was extremely fit my whole life as a competitive dancer now I have doctors calling me Benjamin Button saying I'm aging in dog years from how many problems hit me recently, so thanks in advance for any advice-- also sorry in advance for actually getting through this rant!! : )

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Chronic daily headache ( occipital neuralgia)

Chronic upper middle back pain

Hypothyroidism

Hiatal hernia

Gastritis in stomach

Chronic constipation

Stomach pains after eating

I also get canker sores and random itchy bumps on my skin.

I do feel like I am aging too quickly. I sound lke a grandma always complaining about pain and being tired. I am only 33!

I woder what the connection is with N and having multiple health conditions.

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If you get the N diagnosis, there's probably a pretty good chance it might be the cause of the first one on that list. With all your GI problems though, it is possible some of your issues are caused by poor nutrition. You may not be getting a lot of the good stuff out of the things you eat. That is why people keep on pushing the gluten-free thing for fatigue. I for one, am pretty sure it has nothing to do with my health issues, but if you do have chronically inflamed GI stuff going on, it can cause all sorts of bad juju.

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I am trying to be gluten free. It does help.

I think being sleep deprived makes us more susceptible to illnesses and/or chronic conditions. So i think there might be an indirect link. This might be a shot in the dark but has anyone noticed any improvement in other conditions after starting treatment for N? I am kinda hoping to have relief in other areas after I start treatment.

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...started getting stomach issues, and I get holes in my gums-canker sores won't even cut it as a description!-along with the back of my mouth shedding. I also get little bumps on my skin that itch. The worst is this past week I've started to get a very frequent heart flutter...I get the random pounding palpitation in the middle of my chest that takes your breath for a moment but the past couple days it's been a few times an hour extra beats fluttering near my throat.

Did those things start after you started Nuvigil? If they did, is it possible they are side effects from the Nuvigil?

 

After my first sleep study I was diagnosed with PLMS, and then "Snoring". I also get migraines, that became worse and more frequent as my sleepiness got worse; and asthma and hay fever, which I have had since I was a kid.

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On top of the Narcolepsy with Cataplexy (which I'm sure some, or many, of these relate directly to such):

Minimal/moderate Idiopathic Central Sleep Apnea

Cervical Disc Degeneration Disease/Arthritis of the neck

Migraines and Headaches

Depression (occasionally for obvious reasons)

Mixed Connective Tissue Disease

Raynaud's Syndrome

Sinusitis, Rhinitis, Tinnitus, frequent Middle Ear matters

ENT matters are frequent

A lot of allergies and food intolerances/sensitivities 

Sensitivities to heat, sun and over-exertion

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On top of the Narcolepsy with Cataplexy (which I'm sure some, or many, of these relate directly to such):

Minimal/moderate Idiopathic Central Sleep Apnea

Cervical Disc Degeneration Disease/Arthritis of the neck

Migraines and Headaches

Depression (occasionally for obvious reasons)

Mixed Connective Tissue Disease

Raynaud's Syndrome

Sinusitis, Rhinitis, Tinnitus, frequent Middle Ear matters

ENT matters are frequent

A lot of allergies and food intolerances/sensitivities 

Sensitivities to heat, sun and over-exertion

Have they checked you for mitral valve prolapse? It can be responsible for a lot of dyautonomic functions. Gives your body and brain a kind of staccato blood flow. I only thoughtof that, because one of my friends had MVP and he has Reynaud's as well.

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Thanks for the suggestion.

I have not been checked for such, although I've been told that I do have a heart murmur. 

Interesting and seems could be quite possible, from some reading into it and the symptoms. 

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As I'm sure many would say, it's hard to pinpoint when exactly everything started...I've gotten severe infections for years and stiff achy back/neck/shoulders, but the migraines started later. I know headache and joint pain is a common side effect of Nuvigil so it very well may be the cause, but it throws me because my ENT figured side effect as well until he discovered how infected my sinuses were. I've not felt any headache relief from surgery, but hope to avoid the frequent sinus infections at least.

 

I know chronic sleep issues wreak havoc on your immune system and as a speech therapist I spend my days cleaning children's sneezes off my face, but it gets to the point where I can't really assume one medication is causing full body destruction. And do I take migraine medication to deal with Nuvigil, and another medicine for side effects that will cause, and so on...that can't be my life. Am I just temporarily bitter or is there a likelihood this can all have a valid causal effect?

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This is intereting. After a few months on Xyrem I thought I had a sinus infection because of excessive drainage (sorry). After it stopped, I could breathe perfectly through my nose for the first time ever- even after 2 nasal surgeries.

 

Even though I have since discontinued Xyrem, I am still enjoying the use of my nose. I do not know how all of this is related, but it is no coincidence. I think Xyrem gave me the restorative sleep my body needed to make some necessary repairs.

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That perhaps, might be the case, but I'd more likely bet the mega dose of salt drained a lot of the H2O from your fatty tissues, perhaps clearing up those nasal passages. I know I used to be able to breathe freely as a kid, before my weight gain. I'm hoping I might some day lose enough to gain the use of my nose back again.

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On top of the Narcolepsy with Cataplexy (which I'm sure some, or many, of these relate directly to such):

Minimal/moderate Idiopathic Central Sleep Apnea

Cervical Disc Degeneration Disease/Arthritis of the neck

Migraines and Headaches

Depression (occasionally for obvious reasons)

Mixed Connective Tissue Disease

Raynaud's Syndrome

Sinusitis, Rhinitis, Tinnitus, frequent Middle Ear matters

ENT matters are frequent

A lot of allergies and food intolerances/sensitivities 

Sensitivities to heat, sun and over-exertion

Here is some trivia I have learned that may be helpful:

Tinnitus can be related to mild Cataplexy. The changes in muscle tone can cause a ringing- similar to how C can cause blurry or double vision.

Over-exertion can be a trigger for Cataplexy. Sudden effort brings on Cataplexy, although sustained moderate effort is not a problem. Cataplexy can also be induced by exercise. I often get mild C after a run, but not during a run- my knees get wobbly. This is different from the normal "my legs are tired" feeling.

ENT issues are part of my life as well.

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Good points Hank.! 

Very interesting, regarding the tinnitus relation, I'd not connected such but now can clearly relate it, experiences of such; I don't tend to experience (or note) visual oddity though during Cataplexy, for the most part I tend to see quite clearly during...

 

Definitely agree and have similar experience with such in regards to over-exertion.

As Cataplexy progressed for me in my 20's from a rare collapse to an often, sometimes, daily collapse/s; my exertion level began to interfere with Skateboarding, which I can no longer do but on a, not so often, occasion (Unfortunately :[  )...

Skateboarding isn't the most intense exercise, but depending upon the terrain you ride the energy/exertion level/s vary. 

For instance, I can go around mellowly cruising a skatepark which is open and spread out with lots of transition/s and/or bank/s, for 20-30 minutes even just carving around as though it's like snowboarding (mellow slopes); but when I get into a deep, tight, bowl or pool for instance, I can only go maybe 2 - 3 minutes (I guess to make the comparison for snowboarding as well, a real steep slope would not be a wise idea, as it would quickly result in the weakness or collapse from Cataplexy).

The Cataplexy begins to interfere/occur, more and more, as you get more exhausted and/or the more you push the exertion level intensity.

The pleasure/s from the activities triggering Cataplexy is a whole other bag, to add to the triggering mix.

Thankfully, I really only had one full out immediate collapse from Cataplexy while skateboarding and it occurred at the point I should have ridden off the coping (lip of bowl transition); which resulted in me just ragdolling down the transition with no negative consequence.  Although, that was the day I knew I had to basically walk away from my life passion.  =..(  For years, I'd been battling it and seemingly overcoming it (to a point); in that I'd often step off my board soon after riding out of a trick, stoop forwards with my upper torso while having some 'who knows how ridiculous facial (muscle-less-spasming) expression' and let the Cataplexy do its thing briefly, before stepping back on my board and riding on to the next trip, then Cataplexy.!

The best thing I've found for Cataplexy in every scenario, unless it is only mild, is to lay down ASAP and just sprawl out the limbs however comfortably (if possible) to then just concentrate on my core, while breathing slowly and taking my mind off of everything and anything besides my breathing and bodies core...

 

As for ENT issues, such are terrible and seemingly endless. 

Are you 'allergic' to many things?  And, do you live in a humid climate with high pollen/allergy levels?  I unfortunately do and have no option of changing such...

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N+ Sleep apnea, hearing loss, tinitus, they are now saying Raynaud's disease in my feet, which I disagree with. I have fluid sensation in my throat. I was so healthy and active, now everything is a challenge.

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bi-polar, post traumatic stress disorder and N with Cataplexy and hallucinations.  i get a strange smell of stale beer and right after that i get into a hallucination state.  they still cant find out why i get seizures with the cataplexy.  the only thing i have been told is tht it is my bodies way of dealing with my emotions.  im on so many meds right now i cant even name them all.  still working with my shrink to get me OFF all the meds. i think they are making me feel alot worse.  i keep getting sick...sinus infections, colds, got a flu shot and got the flu anyways...seems like my own body is working against me. if someone is sick and walks past my house i get whatever they have.  my immune system is just getting weaker and weaker since i was first diagnosed with N with C and the hallucinations and the sleep paralysis.  really starting to feel like im falling apart at the seams.  oh crap, whining..sorry.

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Neurofibromatosis type 1, osteoarthritis (since I was 6!), scoliosis, poor vision (nearsighted in one eye, farsighted in the other--which is lazy and has an astigmatism), allergies (often leading to sinus infections), prosopagnosia (face blindness), and the occasional migraine. No meds for most of them--there aren't any--but I do take OTC allergy meds and ibuprofen when the pain from the arthritis gets bad.

 

For sleeping disorders: narcolepsy w/cataplexy, insomnia, circadian rhythm disorder and REM sleep behavior disorder. The last three have been all my life. N w/c, I'm not real sure about. I've had HH all my life, but my first cataplexy attack was when I was 10 and the EDS didn't really manifest until my teens ... even then, it wasn't bad enough I couldn't deal with it. Didn't get that bad until last year, which is when I got diagnosed with N w/c.

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Allergy related: chronic sinusitis, chronic idiopathic cholinergic urticaria

Autoimmune: Sjogren's

GI: intermittent IBS, ulcerative colitis

Maybe due to narcolepsy, maybe not: accommodative disorder of my eyes (can't properly focus both eyes together, my doctor calls it wavering myopia) and slow weakening of eye muscles forcing me to need prism lenses. Needing new prescription every 9 months or I get severe headaches.

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My official dx is still pending, but I have tinnitus, allergies, immune mediated gluten intolerance, Hashimoto's thyroiditis. My sister has N+C and Crohn's.

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Allergy related: chronic sinusitis, chronic idiopathic cholinergic urticaria

Autoimmune: Sjogren's

GI: intermittent IBS, ulcerative colitis

Maybe due to narcolepsy, maybe not: accommodative disorder of my eyes (can't properly focus both eyes together, my doctor calls it wavering myopia) and slow weakening of eye muscles forcing me to need prism lenses. Needing new prescription every 9 months or I get severe headaches.

I think I have something similar going on with my eyes. I've always had 20/20 vision, but I feel like my eye muscles get sore when I'm focusing on a computer screen or something similar. And, I often find myself squinting even though I can see fine... it's almost like it feels more comfortable to squint or something? After looking into it on the internet, I think it's something called "converging insufficiency".

 

People with convergence insufficiency may have otherwise normal vision, and the condition may not be detected during a routine eye exam. There are special eye-focusing tests that must be done to diagnose it. One is to measure the near point of convergence (NPC) which is the distance from your eyes to where they can focus w/out double vision. Another test is where they assess positive fusional vergence (PFV) by having you read letter on an eye chart while looking through prism lenses. Is this the type of test they did on you? How did the eye doctor think to do this test??

 

I believe that this problem may be a trigger of my migraines if I am in front of a screen or trying to focus on something for too long of a time period.

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N w/mild C (diagnosed at 24yo, symptoms began at ~21yo)

major depressive disorder (since ~18yo)

PMDD (this one is self-diagnosed)

mild tics (fyi- my younger brother has Tourette's syndrome.)

classic migraines w/aura (since ~13yo)

convergence insufficiency (self-diagnosed)

 

fibrocystic breast disease w/benign cysts

chronic allergies that are manageable w/allergy med

I feel like I am always getting tonsillitis infections..

 

past conditions that are no longer active:

+ Epstein-barr virus (~21yo)

Hand, Foot, & Mouth Disease (as a child)

HPV (~19yo)

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MCP, I also think a decent amount of it has to do with narcolepsy itself in that the eye muscles, just like many others, become fatigued. The eye doctor I have been going to since I was 10 mentioned that, at least with my eye muscle problems, it's could be due to exhaustion. My focus issues, there isn't really anything that can be done about them. At least what he said is that some people are better equipped than others. He thought there was something wrong with my brain when I was 10 because he had never seen it before, so he termed it "wavering myopia". I think the proper name for it is accommodative insufficiency. I suppose it's no surprise that it and convergence insufficiency are often seen together. It's a very frustrating condition and has continually irritated me for almost 18 years now, but there isn't much more I can do. I just have to look out that when I get a new prescription, I go back a few weeks later if the new glasses don't seem quite right. Often times, if my eyes settle somewhere out-of-focus, it can give erroneous measurements. 

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Hank,

Thank you for posting this article. Very interesting! And, I am not surprised at their findings. I look forward to finding out which comorbidities they are talking about.

Thanks for sharing!

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Working on a diagnosis for
-Narcolepsy with Cataplexy (escpecially slurring of speech), hallucinations, sleep paralysis, memory loss, frequent headaches/nausea 

Diagnosed with all of the following:

-Dysmenorrhea

-PMDD

-Generalized Anxiety Disorder

-Obsessive Compulsive Disorder

-Orthostatic Hypotension (especially during microsleeps)

-seasonal allergy induced Asthma.

-frequent Sinusitis

-allergic/sensitive to processed corn

-Iron, B12, Vitamin D deficiency

 

The memory loss and heavy fatigue scare me most. 

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the memory loss and fatigue i can relate to.  i dont like not remembering if i showered in the morning..i forget by the evening. i talked with my doctor and all i got told was be ready...this doesnt get better when you age, it gets worse.  made me feel like i already had one foot in the grave.  i just do it one day at  a time.  if i need to nap, i nap.my biggest problem is i get so tired at dinner time its hard to cook sometimes, i've already fell asleep at the stove once, knocked a saucepan over, thank god it didnt land on me.  scarey sometimes during the day when im home alone and i feel seizures coming on.  i try and get to a safe place..sometimes i dont make it.  i've already fallen down the stairs because of cataplexic attacks as i was going down them.  im just greatful that i havent broken anything, just have had some concussions over the years.  i have the seizures when i have the cataplexy attacks, just not always.  i think its a matter of how much stress im under at the time of the attacks.

my b12 was basically non existant so am on 1000 mg per day for that. i did just now found out that my cholesterol is way high.  dont know how that is, i dont eat enough to make it high. not sure what is related to what anymore. doctors dont seem to know either.  neurologist just says im not epileptic so they cant do anything for me and my seizures.  psychiatrist says i need to go to the neurologist to find out about seizures...been trying to explain to her i've been to one 3 times and nothing is found.  dont know who to turn to next. 

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