Anyone else dealing with multiple conditions?

Hey all,

I seem to have been dealt a rather poor hand of cards. I've got narcolepsy, with cataplexy and sleep paralysis, but I'm also struggling with hemipeligic migraines.

More general things I deal with are some rather bad allergies (dust, mold, pollen, dogs, cats), really bad food intollerances and sensitivies (I collapse within 10-15 minutes of eating any artificial vanilla, I have seizures 2-4 hours after eating anything with FDC Red #40), and I have Asperger's syndrome.

For those who've never heard of hemipelegic migraines, they're one of the rarest forms, less than 1% of migraine sufferers have it. More than half of my family has migraines, my father had optical, my sister classical, my brother gets cluster headaches.

Hemipeligic migraines are mostly known for the 1-sided paralysis, which is basically how the aura manifests itself. But, unfortunately that's not the full scope of the condition, I frequently get more than 1-side, or temporary total paralysis, I loose the ability to speak, or even open my eyes.

Many of the symptoms can vary with individual migraine attacks. Sometimes it can be indistinguishable from a stoke, left side of face drooping and all. Unfortunately, this form of migraine has also been known to cause strokes as well.

The other symptoms include memory loss, fatigue that persists for long after the migraine, and muscle weakness on that side that can continue for weeks or more.

One of my main problems with this is that while Xyrem did wonders for my fatigue levels in treating the narcolepsy, and made cataplexy and sleep paralysis much less frequent, it also triggered my migraines.

It started off fine, but after a few weeks I'd wind up with a migraine every morning, which would usually clear by mid-afternoon. That's how I pinned it down to the Xyrem, I stopped and restarted it for several weeks as well to be sure.

Nuvagil and other stimulants have the rather nasty adverse effect of making my anxiety levels skyrocket. I'm an Aspie, and anxiety is an ongoing thing I deal with, but that pretty much took it out of my control.

I suspect part of my problem is that as an Aspie, I'm incredibly sensitive to *everything*, sound, sight, taste, smell, certain foods, medications, pain.

I can sit down with the family and a pizza, and they can all eat it just fine, but if I take a bite when they do my gums will literally peel in sheets off the roof of my mouth from scalding, so it's not simply a psychological sensitivity, it's physical.

Anyway, I'm still trying to sort all this out, what I want to do going forward given what I'm dealing with. I've tried muddling through and continuing on, but every-time I try to make progress it only seems to make things worse. Then again, most people with hemipelegic migraines will tell you that fighting it will only make things worse as well.

Dan O.

Dan I really feel for you. I have Narcolepsy with Cataplexy including all the sleep paralysis and hypnogogic hallucinations and on a bad day I struggle. To learn that you are dealing with this and everything else that you mentioned really makes me count my blessings.

Are you in America? I am in Australia and I take different medication for my Narcolepsy. Do you take any medication for you migraine condition?

Is Xyrem the active ingredient or the brand name?



I'm in the States and Xyrem is the brandname for the drug Sodium Oxybate.

Currently I have a couple scripts which help with the migraines, but when the weather gets bad I still hit the deck. Those scripts include Nimotop, and I forget the other one. Like I said, hemipeligic migraines are a whole 'nother ball of wax, so the usual migraine medications will actually make things worse, these need their own. :P

I'm not really taking anything for the narcolepsy, one makes my migraines worse, all the others make my anxiety uncontrollable.

Also, to go along with the sensitivities, I just found out why I've been having such massive episodes of paralysis for the past few days. Turns out my wife had just started using some hair gel now that she's starting class for her CNA certification. The hair gel has something in it, possibly the PVP, which was causing me to have a bad reaction of muscle weakness and paralysis, mostly my lower-half, including bladder muscles, within about 10-20 minutes of her coming home from class.

After a few days of severe episodes of that mess, she went back and looked over everything that had changed, and that turned out to be the culprit, been better since.

SPwithNCinOZ said:

Dan I really feel for you. I have Narcolepsy with Cataplexy including all the sleep paralysis and hypnogogic hallucinations and on a bad day I struggle. To learn that you are dealing with this and everything else that you mentioned really makes me count my blessings.

Are you in America? I am in Australia and I take different medication for my Narcolepsy. Do you take any medication for you migraine condition?

Is Xyrem the active ingredient or the brand name?


Hey Saltgirl,

What you describe sounds an awful lot like a set of symptoms I've had since I can remember.... If I go too long without food or do too much physical activity I get irritable, some-what nauseous, head aches, light-headed, confusion, poor concentration, weak, and am prone to collapsing.

I've also been noticing that eating too many fatty foods causes a similar, though more drawn-out, set of symptoms. Sometimes if I eat too many potato chips I'll feel like I've got a bad hangover for the next full day, mostly the "gut rot" side of a hangover, which IIRC is also caused by the liver having trouble dealing with the alcohol.

From what I gather though, these Fatty Acid Disorders involve a deficiency in the ability to absorb / break down certain fatty acids. Could this have anything to do with my inability to gain weight?

Dan O.

I know where your coming from. I have catalepsy and sleep paralysis and sleep apnea. I also am allergic to eggs, milk, chicken, shell fish, and nuts. Plus, this constant weight gain and medicines. I'm only fifteen and i have multiple conditions, but at the end of the day you learn to cope with them.

I also have Hemipledgic Migraines and additional Rare Neurological Disorders. I know they are all related.

Hi Dan -- I'm sorry you are dealing with so many physical issues, but what makes me feel hopeful for you is all the "detective" work you do to figure out WHY certain things trigger your migraines, muscle weakness, food sensitivities, etc. Having multiple conditions is like a jigsaw puzzle that fits together when you finally figure it all out! In the meantime, you attempt to make each piece fit together -- sometimes successfully, sometimes not. I always think of myself as a work in progress -- sometimes I cope well with my physical disorders but struggle with mental issues. Sometimes, it's the other way around. Like some of the replies to your discussion post, one of the worst issues for me is hypnagogic hallucinations. They really send me in a downward spiral at times. Lately, with the change of seasons and time changes, I've been a mess. I have tried so many medications for both my narcolepsy and migraines and depression that my medicine cabinet looks like a pharmacy. My latest attempt to quell my symptoms and deal with fatigue and headaches is using vitamin supplements and paring down my prescription medication to a minimum. I am taking Effexor for overall depression therapy, clonazepan for night time sleep, xanax for panic attacks, and Requip for restless leg syndrome. I take vitamins B12, E, and D3, on a consistent basis. My environment plays a big role in how I feel and function. When I am in the country, I rise early and go for a walk as soon as the sun comes up. When I am in the city, it's much more difficult to go for a walk. I guess deep down I'm a country girl. I always thought I was a city girl because I grew up in the city and have spent more than half my life living the fast-paced lifestyle. I guess I've finally slowed down. I think I deserve it. Otherwise, I would be dead right now. Either from a car accident from falling asleep on the road or by having a complete mental breakdown due to a chemical imbalance. I'm sorry you are struggling with so many conditions. I'm glad you have this forum to discuss what you are doing, what is working and what is not working. Everyone here cares about each other.

Best regards - Coping

Hey all,

I've recently discovered that my particular assortment of health issues may not be entirely by chance. I've known for some time that several of these are auto-immune disorders, including Narcolepsy as recent research shows. The main question up to this point was what changed? Why did I suddenly go from classic migraines without aura to hemipeligic? Why did I go from having the excessive fatigue of narcolepsy, sleep attacks, etc to adding on cataplexy, more frequent and intense sleep-paralysis, etc? Why did my food sensitivities suddenly go bezerk?

Turns out I can say with some degree of confidence what happened regarding the changes with the migraines, and that may shed insight onto everything else...

There are at least 3 different genes that can go awry to cause hemipeligic migraines. One is the most common, around 80%, but the symptoms are somewhat different from mine, and it most commonly runs in families, which I haven't seen.

The 2nd type, at around 15%, is the one with the persistent muscle weakness, known for mimicking epileptic seizures, is common in Irish and German heritage (of which I'm 25% each), and the kicker is that it's frequently activated by Mono, which I had just months before all this started.

I got Mono via my wife after we were visiting her family in MO. At that point I was working 45hrs/wk as a photo lab manager, doing all the standard prints, enlargements, slides to CD, customer service, photo restorations, and the one-man IT dept for the store (14 PCs), plus doing all the maintenance and repairs on all the photo lab equipment and PCs.

It was directly after I got mono that things took a steep turn for the worst, and I haven't been back since. Narcolepsy which had simply been a struggle with excessive fatigue and sleepiness added cataplexy and sleep paralysis. Migraines suddenly became hemipeligic.

The migraines are tied to the Vagus nerve, which explains all the problems I'm having with vasal-vagal reactions, and could explain a lot of my new sensitivity issues as it's largely sensory-based.

I'm currently trying Botox injections to reduce the inflammation in the Vagus nerve, having some good initial progress with that, hoping it continues. Typically the full benefits aren't seen for months after the first round, usually after 3 or more rounds of injections, so there's a lot to hope for.

I'm currently getting over acute bronchitis, a bad sinus infection, an ear infection, which all directly followed a bad cold / flu which followed seasonal allergies, which started in mid-August.

I now have a son as well as a daughter. My son John was born on August 26th, that's why I remember when the seasonal allergies started up. They kicked in a little sooner this year than usual, I've had them since I was 10, but I clearly remember coping with an extremely sore throat while making trips too and from the hospital. My son was born 4 weeks early, at 5.5lbs, so he was in the NICU for 9 days, plus a full 20 hours of labor and delivery.

I wish there was more family history to go on. My father lived the longest of any male in his line, and he was the only male child in his family. His sister is still doing well, but his father passed at age 58 of Pancreatic cancer, his uncle at age 62, his Grandfather at age 48, when his father was 2. His G-Uncle also passed at around 42, and his G-Grandfather passed at age 47.

In short, my son is the 5th generation in his line to never know his own fraternal Grandfather. There's really not a whole lot of history to work on regarding what health issues are lurking in the genepool.

Dan O.

Dan -- The only thing you can do is break the cycle by getting as healthy as possible so you can see your grandchildren. I'm sorry about all your losses. My own Dad died when he was 52.

Well, just thought I'd update this with my latest diagnosis.... Ulcerative Colitis.

Spent most of the past year or two with bloody diarrhea, it's been hell. Spent 10 days in the hospital a month ago, that was "fun" (not!). They took their merry time giving me a scope to make the diagnosis, first trying diet, then having my hemorrhoids removed (surgically, during a UC flare!).

They've got me on the best meds now, Remicade, but thus far I'm not making much progress... still having bloody diarrhea on a daily basis. (hourly-basis is actually more like it).

It's almost to the point of absurdity how much I'm currently dealing with. When I was in the hospital I had at least 5 hemipeligic migraine episodes, one mimicked a stroke enough to warrant going down to the MRI to make sure it wasn't. I had numerous sleep attacks, I fell asleep during a meal more than a few times, often with food or drink still-in-hand. I had bad sleep paralysis, and with the nurses coming in I was never sure what was a hallucination caused by sleep paralysis and what was actually the nurses coming in to check on me.


Dan O.

I'm sorry you're having the ulcerative colitis symptoms, and I really hope you have some remission soon. One health problem can throw things off enough for your other conditions to be triggered, too, as you are experiencing. I feel for you.

I read your previous posts here and you mention botox for migraines. I wondered if it helped as a treatment? I have had some luck with it.

I sure hope you're feeling better soon.

Wow. I feel for you and wish you the best of luck. My ex had Crohn's and it can be very hard to deal with.

Myself, I was diagnosed with depression my senior year in high school and given antidepressants. Six years later I was diagnosed with Narcolepsy. Then it was sinus surgery, thyroid, hysterectomy, degenerative disc disease, sleep apnea, high blood pressure, borderline diabetes, and now kidney stones at the age of 45. A few years ago I read a theory on a site called the Zombie Institute that suggested a gluten intolerance may lead the body to fight and destroy the hypocreatin we all are lacking. I gave the gluten free diet a try and now if I eat gluten I get sicker than a dog. So, unofficially, I have gluten issues.

While all of my issues are hard to deal with, probably the worst is lack of support. People don't understand and I look like a whiner. Social situations are difficult especially when society puts so much emphasis on food at gatherings. No, can't have the birthday cake, coffee has caffeine, what is the sodium content of that? I will eat before and/or bring my own stuff and people won't let it be. They are trying to be helpful but it just makes me feel more awkward explaining why I don't want to eat their grandmother's famous recipe for whatever.