It isn't an everyday occurance but it happens in severe attacks (and not always in those either). Sometimes it gives me a little warning, so I can rush to a bed and it feels like I'm just falling asleep, but like yesterday it happened when I was sitting, writing on my computer and watching television No warning, just a blurred vision for a bit and I was out like the porchlight.

It's happened to me a couple of times when I was driving, but then I still had the capability to resist it - at a heavier cost in pain lenght and intensity. Now it seems I do what the Beast wants.

I'm asking about the valium, because I occasionally use it to release the muscle spasms on my back. The only thing that seems to do trick actually. So I guess I'll find out when my back gives out the next time.

      I'm not familiar with Topamax,  are these common or at least semi-common side affects of the drug?  If so I might be looking for a change, those symptoms sound pretty scary. I'd be talking to my Doctor.

      Good Luck,   Sean

Two weeks in with the 100mg dosage of Topamax. Some CH attacks have occured, nothing above Kip6, but I don't know if that is due to the stomach issues I have. The sleepiness/fainting thing still happens in stronger attacks. Also I get the face numbing symptoms.

Called the neuros office, my doc is on vacation, but I got a call time as soon as she is in next week. Some other neuro there claimed via the nurse I sobbed my story to, that Topamax doesn't cause any stomach problems.  That I should just go to my GP and complain there. I did, and got meds for the symptoms, which was all she could do.

The skin peeling off has stopped, when I stopped taking magnesium  with my D-vitamin (ran out). I don't know if it was that magnesium, combined with topamax, or what.. But it is still weird. Now I take magnesium only every few days or so.

I get my D-vitamin level test results this week!

Still waiting for the nice weight loss every keeps talking about, as are my ortopedic surgeons. Only a few pounds, even though I've cut down on my eating hugely, and can't drink sodas anymore (I miss Coke like crazy). Even cut down on my chocolate eating (and you can't really separate a girl from her chocolates).  I seem to have formed an addiction to oatmeal since it seems to be the only thing that doesn't make me want to puke and cause a lot of other weird vertigo type things.

But they tell me these will go away after a few months... So one down, two months to go? 

No I cut the Coke* because the Topamax made it taste really really weird.

I just realised that I can't really do exercise anymore, I start to hyperventilate easily. This is beginning to sound like I'd rather battle the beast than stay on the drug...


*Makes me sound like a drug dealer if taken out of context 

My neuro is taking me off the Topamax at a rapid pace. I'm getting O2 at home instead! Finally!

I have to go on gabapentin (which to me is weird since I'm already on Lyrica). But the doctor says so, until some other doctor tells me something different.

I'm still on the D3 regiment, which so far, to me, has made the biggest difference.

But I am looking forward to drinking Coke to getting rid of the shadows. And having a full meal... If I'd been eating this little without Topamax, I'd have lost way more than just 10 pounds in 6 weeks. Horrible stuff that drug, but I did manage to sleep and get a few PF days out it, so not all bad, I guess.

PS. I used to deal it. And Pepsi. Not mention Fanta and Sprite!

OMG I get the nose pain SO BAD!!! For YEARS before I figured out what my real problem was (CH) I was treated for chronic sinusitis and was told to self treat for it - which of course was incredibly unhelpful. I have found that sometimes if I put pressure on other places in the trigeminal nerve (such as the top of my orbital socket or my temple) the pain will be diverted to that area and give my sinus cavity (and nostril, and throat...) a little break, but as soon as the pressure is off the pain signal is sent right back to the nose. I also have a huge problem with tooth pain - which is also relieved (temporarily) by putting pressure on other parts of the trigeminal nerve. I have considered having teeth pulled even though I know it's not going to help. Sometimes if I am just having a 3-5 scale headache, the pain in my nose/teeth is worse to me than the actual headache I am having a 2-3 scale headache right now and my teeth on that side are KILLING ME. I wish I could make this stop... but we all do I suppose lol.

Venus - I know the tooth pain thing too. It really feels like the teeth are being pulled, but into the skull - not out of your mouth like in the dentist.. Having half of your face feeling like steamroller just ran over it, but just the fleshy parts. Inside the skull, the bowling ball baby is wanting to crawl out like an Alien from your stomach. There's an image Giger missed painting! The horror would have been worse - it would have been real!

It often is that if you relief the pain in one place with pressure, cold or anything, it goes to another, then right back to the original spot. But sometimes the temporary relief is crucial fighting the long war with the Beast.

I'm three days away from being off Topamax. I'm counting the minutes till Coke tastes right again. No help from Gabapentin yet - but I don't have high hopes anyway, since I'm already on Lyrica. But the doc wants me to try it, so I'm trying it.

Ok, had a lovely almost two weeks of PF. Effing loved it. Had some vacation time so I just relaxed like a sloth

Last saturday I had a bit of shadows, but that went away with just a cup of coffee. Shadows every other day since, but yesterday had a Kip 5 attack, that went away with energy drink and a nasal spray. My flu came back a bit too, might have had something to do with it.

I noticed something yesterday - I had swelling all over my body when I woke up (arms, legs, face...) Now in itself there is nothing new. I've haad them for years, and up till now, I've put that due to a mystery illness, that I now know to be EDS.

But I started to wonder, I've usually had this severe swelling on the morning of a bad CH day. Is it a symptom of EDS or CH? Or is it a combo effect? Something happens in a chemical level on a bad CH day, and my body just reacts to it?

Guess my question is, has anyone else noticed swelling on the days of attacks? It isn't massive swelling, but enough to notice and make my overall feeling like a really bad hangover.

I am trying to get the D3-levels lab test soon, I think I am teetering on the edge values of being PF for good.

D3 has helped me already, the intensity of the attacks are much less severe, not to mention what it has done to my knees and back! I am in a firm belief that because of d3 I managed to stop taking the opioides daily. Now I just treat the real pain and not the nerves going funky. I am currently in talks of reducing my Lyrica dosage to see it will have any effect on my neuropathic pain and numbing feet.

I have seemed to settle now to a cycle of 2 pf /easy days to one CH day. Migraine has flared his ugly head again, and on Tuesday had an awful day of a continous migraine with several CH attacks going all the way up to kip8. Not quite banging my head on the floor, but not far from it. It was the worst day I've had in about a month, I think.

I have confirmed the swelling - any day I have an attack the swelling is more significant and painful than on pf days. (and when I say pf, I mean headache pf. Completely pf is an unknown concept to me since i was a teenager). It seems to attack my hands and feet the worst, face being right up there too. Also noticed that eating a decent meal everyday helps to lessen the pain in headaches. So no skipping meals for me.

And boy, do I love my Coke! I still have a steady supply of energydrinks at home, and I carry a can in all my bags (like I have done to the nasal sprays - in every jacket's pocket there are one. Also in bags).

Neuro agreed I shouldn't begin Depakote, since I had tried that almost 15 years ago with bad results. I had just tried it under a different name, and didn't recognise the active med it contained. Unlike now, when I researh every med I take. We are moving off the epilepsy drugs, and trying Atacand instead. It might help with the migraines atleast, if not the CH.

On other news, the bureaucrats are trying to figure out what to do with me. The winning idea seems to be at the mo, to put me on disability retirement. If it for forever or a temporary thing (like 5 years) I don't know yet. But they are figuring that my severe symptoms of EDS combined with the CH and orthopedic issues I might get disability compensations and such. Which means more physical rehab for me!!! Which would be wonderful, since I need specialized treatment with a team of medical experts. Doctors don't know shit about building up specific muscle to avoid dislocation on some joint - that's where the physio therapists come into play. But I hope I they will make it at least 2 weeks a year for me..

So I have accepted the fact that 2013 & 2014 my day job is paperwars with different goverment bureaucrats.. Oyeh. I think I'd rather have the beast as a houseguest. At least there are way to cut off the attacks! 

Now I just need to find a way to get a moisturizer on my O2 tank. I sound like Tom Waits after I abort. And it apparently ain't a voice my darling hubby finds particularly, um, feminine. 

I got my newest test results. I'm at 86. I went to 10,000 IUs about a week before the test and stayed on it for a few weeks while waiting for the results. I started getting more and more hits.

I took a loading dose, and that calmed things again for a few days, but they started again after that. I also started having more migraines among the CH hits.

I don't know if this is a last hurrah of the beast or what, but it is frustrating. But on the good side, I am getting full nights of sleep more regularly, and when I do have a good night, I usually have a PF day. But if for some reason I don't sleep good, a hit is usually on its way.

I also have noticed that opiates and diazepam seem to aggravate a CH hit to come.

Luckily, these hits are MUCH easier than the hit before I started the regimen back in late April. I think I've had one Kip7, but usually they are around Kip 4-5 max. I've also had more painless hits, but "the benefits" are there; the face numbings, teary eye, runny nose and fuzzy sight...

I've been on blood pressure medication now for some time, but I haven't noticed any benefits. I have a phone call scheduled with my neuro just after New Year's. We will see what she says.

I guess I'll try upping my daily dose, while I wait to figure out what my Beast is up to. But I am crossing the chronic timeline in January. Having something to wait for, I guess?

(Sort of off-topic post, but lots on EDS.)

CHS - I am sorry to read that your son also suffers from EDS.
EDS in its all found forms is a disabilitating condition. I have type III, the hypermobilia one, but I show a great number of symptoms from I and II category too.

I used to sit in the sidelines at school too often when others did gym and the like. But I guess pigheaded enough to still try. The number of times I broke bones on my toes is staggering. And I have no idea how many hairline fractures I had growing up - the doctors were perplexed back then too, when I dislocated a shoulder and a few days later it was better, until it happened again and again. But nobody suspected that anything was wrong. I just "grew quickly".

I learned to keep myself entertained too. Computers were my friends, and the early days of Internet was my great social saviour. I later on made it my profession, so it couldn't have been all bad, right? Not that my mother liked me playing on computer for 16 hours at a time, but I got hooked on Civilization!

I hope this doesn't offend you, but consider cutting your kid a break if he actually gets into something that helps to keep him occupied. Not that he should stop doing house chores and school work, but maybe once in a while, let him get "into a groove" for hours on a time. It'll help mentally to get good at something, despite your body not functioning the way it is supposed to.

For EDS, the long term prognosis is bad physically, but it also extremely traumatizing to experience multiple dislocations, fractures and other medical issues all the time. If he has no access to psychological help, encourage him to start writing a diary or a blog, and discuss with him what it all means to live with a this type of disease. It might not help now when he is a teen, but it will help when he becomes an adult.

Another thing that has helped me now, that my EDS has taken a turn for worse big time, is that I've done years of martial arts. Not only has it been a useful channel to vent my frustrations on headaches, but the biggest thing it has given me is control of my body movement and learning to use my body in natural ways - and to use my whole body to do things, not just my hand or arm.

Maybe try enrolling him into a tai chi-class could help? Or dancing or anything he has to use his body and learn to control his movements.

Falling down the correct way also prevents unnecessary trauma to your body. Here in Finland at winter times the number of people who fall due to slipping on ice and actually break bones, is huge. And it is even a cause of death on the elderly due to complications of a broken hip etc! There is now a pilot program of local judo associations, that they started teaching the elderly how to fall correctly and not break hips, hands or legs. And the results have been really good so far.

To summarize - any help in a total body control is good. Getting more strength in muscles all over is even better. Learning to protect your body in surprising situations is priceless.

I hope you find a forum for EDS for your son, since finding information is hard on any rare disease. That's why I was so happy to find one for CH! Also the fact that people here know more than 99.9% of doctors out there ain't nothing to snuff about either. 

But if you wish to talk more about EDS and how to survive with it, don't hesitate to PM me. I'd be happy to share anything I've learned over the years.

Your muscle-issues sound really bad txsonia!

My back spasms are really bad when they happen, and the only thing I have found to help is a painkiller and valium. If they are just seriously sore and tensed, I have this herbal stuff from Japan. It comes in band-aid form. I stick them on my back when I go to sleep and peel off in the morning. The problem with those is that they do a good job on the big muscles, but it doesn't reach the really small muscles that cause my spasms.

But on other news - I have found a cure for my sore throat problem! the lady at the pharmacy suggested this mineral oil spray that has a long "nose" on it, so you can hit the back of the throat. Tastes a bit odd, but it really works!

I have now entered into a sort of loop - one or two days of relative pfness and then either a really bad migraine or cluster day or both same time or back to back. Then I have a hangover day. And then it starts again.

It is not good. But it is a lot better then 6 months ago.