Hello all.

I have a laundry list of questions but gotta start somewhere.

I am in the process of being diagnosed with Ehlers-Danlos syndrome, which basicly means I'm too flexible and dislocating most of my joints daily. It's a genetic disease that affects the way how my ligament tissues are formed.

Anyways, during my CH attacks it seems my neck vertebrae goes wonky (meaning snap, crackle and pop kinda thing). Also the muscles tighten up (or completely lock) in the neck and my shoulder area right after.

Is this a common symptom? Does anyone else have to deal with another bad disease on top of CH?

Also, in addition to the pain in the brain, I get this extremely painful feeling that I'm trying to give birth to a bowling bowl through my nose. Does anyone else get these kind of "nasal problems"? It goes hand in hand with very bad disorientation and dizziness.

Do to the EDS, my back has gone bad, and gives neuropathic pain. I eat Lyrica for that, and on top I have to use opiods to handle the pain, and occasionally Valium to open up the muscle spams. They seem to aggravate the CH.

I have no idea if my CH is episodic or chronic, since about I was 19 I've been getting migraines 1-3 times a week (or so I thought).

But this cycle seems extremly different than the ones before. I don't know if it is the Lyrica or the constant opioid use, but it's gotten really bad.

The sleeping trigger to a bad attack is still present, and it is also getting worse. The pain starts, makes me fall asleep and I wake up a little later to a kip 8-9 attack. It can escalate to 10 too.

Although I am happy that I know why my migraines are so bad, and I have found a lot of useful advice. Like the coffee. I tried Red Bull, but it didn't do anything. I am in the process of trying to find a energy drink that's sweetened only by sugar as most artificial sweeteners give me a migraine (or an cycle/attack?).

Anyway, I hope I made some sense with my questions. I seem to have severe memory issues and concentration is nowhere to be found. So I'm sorry if I don't make sense or if I write badly. Week 10 of this cycle is wearing me down. Do you count the cycles in week or months, btw?

Given the potential complications that can result from situations such as yours, I can't really offer much concrete advise other than perhaps look into the vitamin D3 regimen on this forum. Pretty inexpensive and you could start today if you go out to the store. Good luck- your situation certainly sounds rather unique.

While I can understand why your questions are important to you I don't expect you will get any clarity here.

EDS, by itself, has so many different way of presenting itself between individuals that it's a very difficult disorder to understand, much less treat.

The understanding of Cluster dynamics is at a crude level, even as we have some helpful treatments the
symptoms.

But trying to integrate any useful understanding of the interaction of these two disorders would be a handful for the best of doctors.

I do hope, however, that you are working with a headache specialist for sharp skills just for this one issue would be of real benefit to you.

Alot of times , during a bad HA,  I find myself clenching all of my neck and back and jaw muscles into a tight mass.  I have to consciously make them relax (I know this is hard), but being all tensed up like that only makes things feel worse, and it seems to inhibit and slow down the time it takes for O2 to work.  So, my point is, maybe you are tensing up, and , due to your genetic problem, you are dislocating your joints.,   Try to relax your muscles and maybe it wont happen.
Good luck. :D

I've also hurt my neck a few times when in the middle of the long dance (before I got oxygen) as I pulled on my head, not quite realising how hard I was pulling it and not really noticing the pain I must have caused until the headache was gone and my neck still hurt.

I've learnt not to do that after doing it a few times.

My chiropractor always knows when I am in episode because my neck and upper back is tight.  I am not even conscious of it as I am just focused on being pain free from the hits! 

You did not mention whether you were on anything for the clusters?  I found RockStar Recovery and O2 helps me... 

Working with a neurologist who specializes in headaches and is cognizant of other medical conditions or is willing to collaborate with your other specialists is key.  After years of looking, that's what I have and the "magic" is that the medication all works together and while I still get "hits," I can manage the various medical conditions more effectively.  Good luck in your journey!

Yes, I'm on Verapamil 240mg per day. I have also tried oxygen a few times. I don't have oxygen at home, I have to go a health center to get it. I will try to get it at home, but it will take time.

I also have Zomig nasal sprays. They take away the pain but leave a shadow, sometimes for the remainder of the day. But coffee helps.

Starting the D3-thing next week hopefully, after I have a consult with the neuro on Monday about everything else that has been going on.

On a sidevent, another kip 9 day! I'm practically Ginger Rogers by now with all the dancing going on. Also, the cats find it funny. 20 years of HAs and I've just been preventing the pain going away with all the painkillers that just made me lethargic all the day. And staying away from caffeine! Worst advice ever!

Does anyone else get the munchies after the attacks?

I've always worked best at evening times, when the cobwebs seemed to clear, now I know it's just the fact that  my attacks are during the daytime, only rarely after 9pm.

20 years of er visits, neuros and other doctors and nobody thought of CH! Even getting the diagnose was a fluke as I started my current cycle when I was sent to the hospital for a week due to my back injury. I guess half of my face drooping every morning scared the nurses... I got a neuro consult due to nerve damage on the back, and it happened during an attack. Yatzy!!!

But this board has given me more info than the doctor did -thanks for that btw!

Quote:

or the constant opioid use

Just so you know.  In most cases, opioids=rebound headaches.

Don't we all have a laundry list of questions :) Unfortunately, some don't have answers.

My co-workers can tell when I'm about to have an attack (even before I realize it) because I drop my head down and my shoulders come up as I tense up all the muscles. One of them usually runs for the fridge to get me a Rojo-Tea Monster. I'm lucky enough that my CH attacks don't last long, and the people I have around me are understanding.

I don't give birth to a bowling ball through the nose every time, more like a tennis ball. And yes, I get dizzy and disoriented.

I have found that every cycle of the beast is different from the last. My first episode lasted 2 weeks. Bam! they're here... Bam! they're gone. My last episode lasted about 3 months. How I didn't get fired by the end of that one I'll never know. I could barely function from lack of sleep.

Sounds like we have some common symptoms, but CH symptoms are rarely the same for everyone. Pain tolerance is a major factor. I know mine is high and that's why I don't even realize I'm having one until I find myself rocking in my chair. The D3 regimen helps, keeps them to a Kip 5-6 most of the time, but I still take it every day. I'd rather take it and it only helps, then not take it and struggle through the super bad ones.

I've been to a couple of doctors... each one has just laughed at my self-diagnosis and sent me away with another migraine medicine prescription. I hope some day I'll find a doctor that has heard of CH (don't they even mention it in med school??). Until then... sleepless nights and hazy days for me :)

Well I talked to my neuro. She doubled my Verapamil dosage, so it's now 480mg per day. She is also figuring out how to get me oxygen bottles at my home. Apparently it isn't that common here.

I just got oxygen treatment while I was at the GP, and I noticed that it took away my tension neck. But the beast came back less than an hour later.

I also found yesterday an energy drink that actually works! And it tasted good :D Bonus!!! And pure sugar.. Yay!!!

And about the opioids - yes I know about the rebound headaches, but I need the painkillers in order to sit and walk, so not using them isn't really an option. ( I know I am addicted to them, but staing in bed, writhing in pain ain't too much fun either.(Been there, done that)

Well, I have high hopes for the D3 regimen which I will start as soon as the vitamins get here.

For the oxygen, work like mad to get it. It doesn't matter that it isn't common where you are, all that matters is that it is one amazingly good way to kill CHs.


Kranskie wrote on May 7^th, 2013 at 6:35am:

And about the opioids - yes I know about the rebound headaches, but I need the painkillers in order to sit and walk, so not using them isn't really an option. ( I know I am addicted to them, but staing in bed, writhing in pain ain't too much fun either.(Been there, done that)

Having been along that route, where all I had was codeine, I know how you will think that you need it, but the reality is that you don't. Once you've got oxygen, you'll be able to kill off your CHs quicker than any narcotic can take effect. You will not need them.

I found that by drinking an energy drink, WHILE I abort with oxygen, I can speed up the abort, AND push back the come back attack by several hours. Several others on the board have had similar results. I'm coming up on 3 years pain free on the D-3 regimen after over 30 years of episodic, hoping you have a similar result!

Joe

Mike NZ wrote on May 8^th, 2013 at 5:38am:

Having been along that route, where all I had was codeine, I know how you will think that you need it, but the reality is that you don't. Once you've got oxygen, you'll be able to kill off your CHs quicker than any narcotic can take effect. You will not need them.

I think I wrote it a bit funny. I don't need them for the CH. I need them because of my spine and knees are fubared, and I can't get up somedays due to nervepain in my back.

Kranskie wrote on May 8^th, 2013 at 11:13am:

Mike NZ wrote on May 8th, 2013 at 5:38am: Having been along that route, where all I had was codeine, I know how you will think that you need it, but the reality is that you don't. Once you've got oxygen, you'll be able to kill off your CHs quicker than any narcotic can take effect. You will not need them. I think I wrote it a bit funny. I don't need them for the CH. I need them because of my spine and knees are fubared, and I can't get up somedays due to nervepain in my back.

Ahh, I understand now.

We frequently see people come here who have only been given a narcotic pain killer to deal with their CH by doctors who don't know much, if anything, about CH and they are convinced that that is the only way to deal with CH.

So... Time for an update.

My doc ordered me to double my Verpamil. That didn't really work out. I was having Kip9 to 10 hits several times a day, ending up banging my head on the floor or just rocking back and forth during the little lull I had between the attacks. So I stopped taking it all together (I dosed down in a few days, not cold turkey.) The attacks became easier after that, at least a bit.

I started D3, and it helps. So far not completely pf, but I did have a few days off the last week. Oh the heavenly feeling! Like a vacation (even if I did have a fever due to allergies) between. I two small attacks (about 20 mins each), but that was at the end of the day and reached only maybe 5-6. So I think it week 15 of this cycle, unless I began another one.

D3 has done wonders for my back pain. I've been able to cut down on my opiate use massively, and I walk better than I have in years.  :D

I also use an energy drink if I get a medium pain attack. The worst ones just seem to thrive on the fact that I'm awake, alert and pumped up for a good ol' head popper.

So I am beginning Topamax now. But no O2 for me. Apparently it is just not done here, that someone would get O2 equipment at home.. Apparently they don't know who pays for it. Me or the goverment or both... So they won't prescribe me it. Easy solution for them! They just say that I should go to a hospital or health center when I want O2.. :o never mind it takes atleast 35 minutes by taxi to get there (ordering it and the actual drive). Longer if I want O2 after 3pm.. then it's an hours drive + 15 mins for the taxi to arrive.

There have been severe thunderstorms here, and they cause me migraines. Does migraine act as a trigger to CH?

Certainly CHs have triggered an occasional migraine for me, so why couldn't it work the other way? If you can't get an O2 scrip then get welders O2. It's the same stuff you just need a different hookup, and if you search here, you'll find complete instructions on how to do it. Skin that cat another way! Good luck, and BTW, there's still room to go up on the verapamil. I didn't find relief until I was above 600mg. God bless. lance

Where are you that they won't prescribe oxygen? Some medical protocols leave me shaking my head. At a hospital in my home town in Newfoundland there is a "headache protocol" that demands everyone with a headache be treated the same, with no pain medication until you've been there for hours and done everything from taking oxygen at 4, 6, and 8 litres per minute for 10 minutes each. Then you have to try ergotamine. Failing that, it's a dose of -- wait for it -- acetaminophen. :-? It's just bizarre. I wish we could get to a place where people are treated like people and not just complaints.

Lance is right about the weldors' oxygen and the verapamil. There are people who need more than 1000 mg daily to get good prevention. I hope the vitamin D3 regimen works not only for your headaches, but your other maladies as well. There's tons of anecdotal evidence to say it could.

We're here for each other.

Best of luck,

rep

A migraine can sometimes develop into a CH attack. Had a few of those. There are also "transitional attacks" which have mixed symptoms - including nausea and vomiting, photophobia etc. as well as autonomic symptoms like tearing, nose congestion etc.

And one other thing Kranskie - the O2 is worth the trouble and the cost if you have to pay and can pay. When used right (!) it is by far the most effective treatment of all.

Also, an option most people here don't like to discuss: cannabis. A current research found this it is effective only for some 35% of CHers, and many say it's actually a trigger for them. I think it's mainly a question of which strain is used because "cannabis" is not really a single plant but a family of plants with a large variety of properties.

Anyhow, if you're lucky, you may find that medical marijuana aborts your attacks quicker than Imitrex. It might also help with your other condition and it bits the hell out of Opioids.

Am i theonly one out there that gets no other symptons
when going through a CH attack, other than the eye, nose,
and pain getting to a kip10 until it fades away, then nothing
until the beast returns again later on.? [smiley=evil.gif]

Hoppy

Nope, you're not the only one, Oh, I might get a creaky neck but that's nothing. Just the whole front left side of my head exploding with wave after wave of increasing levels of pain.Back in the days before ox I just toughed it out. To be absolutely honest since then I've never had to suffer through a real monster, aka a Kip 10, ox works that good for me. I guess I'm a wuss now, I'm just plain scared of a 10. I still remember my worst CH, a rebound, even though it was years ago and I never want to go through that again.   

                        Sean

To be absolutely honest since then I've never had to suffer through a real monster, aka a Kip 10, ox works that good for me.

That's me Sean, the wife and I were just talking about that! It took a hell of a lot of the fear outta CH for me.  :)

Joe

Thank you for all the replies. I am now sure that unless I stop the "thunder storm related" migraine, a CH attack is coming and it's most likely a really bad one.

The D3 regimen is working for me after a month, I actually get PF days in between the CH days, which is awesome. But I get a really bad hangover if I get above kip 6 attack. It seems to aggravate the symptoms from the EDS. I get hypersensitive skin, my fingers dislocate easier due to the swelling in hands, same with my neck (I have too much mobility in my spine, so it does a snap, cracle and pop with the vertibrae). My face feels like I'd been in a boxing match as a punching bag. Eyelids get so puffy I can hardly open my eyes. It takes several hours to "sober up" and everything is just painfull till then.

About the O2, my doctor is trying to get it, but apparently I have to be classed as a chronic CH'er to get it at home. The welder's O2 option is something I have to check out, but it might fall down to the fact that it's illegal to store explosive gas in apartment buildings (or even houses unless they have a well ventilated space yada,yadas, yada). The medical O2 doesn't cause bureaucratic problems on that side.

And I have to wait to find out if the Topomax works first. After everything I've read about the stuff, I have mixed feelings about taking it. When I got prescribed Absenor and triptyls to my migraine a decade ago, all it did was begin a cycle for me, but I didn't know that then. I ended up in the ER for not eating anything in days due to the pain it caused.

Most of the preventative medications I tried then ended up badly. I was even sceptical about the Lyrica, but that one actually worked with only slight side effects. I also have no idea what the combo of Lyrica and Topomax does, and how well I can take painkillers for the back after it, but I guess I'll find out.  :-/

Just so you know. Oxygen is not explosive it is a NON-FLAMMABLE gas. Here's a quote from my Oxygen Patient Handbook: "Oxygen will not explode or burn but it will make burning objects burn hotter and faster."

Here's a link to our 'oxygen info' page.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Are you in the USA? I've never heard of anyone having to be chronic to have home O2. It sounds like your Doctor is afraid to Rx O2. This is not uncommon.

Don

My neck will start hurting when I have a really bad one, it gets really tense

I'm in Finland, and atleast on a quick look, I can get to in a heap of trouble if I use the welder's oxygen and something goes wrong. The medical oxygen I can transport in my car atleast. But I contacted a local Migraine associations Horton's support person about how to get the presciption.

It's now day 5 in Topamax and so far only one attack. Same as some ch attacks, I lost consciousness, woke up about 20 minutes later with no feeling on my right arm.

Now I get achy fingers easily, but I can't tell if it's the EDS or the medication until I put my pressure gloves on. If it's the mess the pain comes bad in five minutes and after I take the gloves off, fingers start to tingle and I lose feeling in them. Also loss of feeling on the face and lower back. Which can be a problem since the loss of feeling in the back is the first sign that I should call an ambulance and get operated. So now I get to play doctor on myself and evaluate for a few hours.  [smiley=confused2.gif]
Then again, I seem to know about my conditions than most doctors. Google is a mighty tool.

Anyone know how Topamax reacts to Valium? The pharmacy staff was sort of at a loss, since it wasn't at their papers..

Google is indeed a mighty tool. Happy to hear the Topomax appears to be working for you. Drugs.com has an interaction checker, but it didn't come up with any reaction between Topomax and valium. Good luck with the oxygen prescription. Do you often lose consciousness with an attack? That sounds really scary.
Best wishes.

rep

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.

And I'm back with the weird symptoms.

So I'm third day in with 75mg of Topamax, and over a month with the D3. It's been a week since my last Beast attack, but it took me three days to get over from the one attack. It was a Kip 8, and I took a Zomig nasal to abort it so I could get some sleep.

The question now is becoming more now do stay with the Beast I know or the Devil (Topamax) I don't?

The changes in taste & diet, the severe nausea, the headaches, mood swings, hair falling and now the new addition: my skin is peeling off!  It's like I've been burned in the sun all over my body. Fan-effin-tastic. I wasn't going to the beach anyway, but still!

The only good thing about the last two and half weeks have been that I managed to lose a few pounds. But the cost has been bad.

      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

That's good advice from Sean. I'm not a fan of those side effects either. It's certainly worth checking with a doctor as soon as you can. The hair and skin peeling sounds like it could be an allergy -- not a good state of affairs. I hope the vitamin D3 regimen works out to be what's controlling the Beast because the Topomax, if that's what's causing the side effects, sounds like bad news for you. Wish there was more I could do to help.

Rep

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.  :o 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?  ;D

Good news on the headaches and the skin peeling. Did you cut the Coke to limit caffeine intake? Caffeine is a part of a lot of treatment regimens and there's loads of it in energy drinks which at least some find a good alternative abortive. I hope the headaches continue to lower in intensity, if you're coming to the end of a cycle, they probably will.

Best wishes,

Rep

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  :P

Trust me, I know no one would rather battle the Beast alone. If there are alternatives that work for you, they may be a better fit. The first try isn't always the best one. I went 16 years and any number of medications, treatments and quackeries before I tried Verapamil. Now if I miss a dose I pay big-time. Most of the time I'm pain free, but in the last couple of years The Beast has peeked his head through the curtain again in spring and fall. Not quite as bad as before, but bad enough. That's my experience only. I hope you find what works best for you and soon. No one should have to suffer. It's the 21st century after all. We should be able to keep people pain free at this point, shouldn't we?

P.S.: Don't worry about the Coke thing. We know you're not dealing. :D

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! 

The grape Fanta was the shizzle back in the day!  :D

Good luck with the new stuff and please keep us posted.

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.

Wow Venus, that's awful news. I can see wanting to get teeth pulled, sometimes it feels like that's where the pain starts. Nasty business, these things. Nasty business. Pain free wishes for you. [smiley=hug.gif]

Rep

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.

Long time since I wrote here, but.. Gabapentin was a bust. Not only did I have several attacks a day, but my memory became really bad. I forgot to take pills still in my hand if I closed it. Or the walking into a room and forgetting why you went there..

The o2 is really good! I want to worship my tank.

But then I got a flu after a week in physical rehab (for the backpain and joint problems). I got a sinus infection that later morphed into a bronchitis. But I didn't get any attacks during the entire I was sick!!!

I had a few migraines when the flu was winding down, and I still haven't had a CH attack!! Could my 7 month cycle be finally over? I am worried that if I convince myself it is over the beast will attack again. Slight headaches are still in the picture, but I actually think they are tension headache, since my neck is killing me all the time. I've even taken my usual codeine& valium cocktail to get my back spasms relieved, and no attacks (or help with the neck)!

I am talking to my PCP to get another D3 test done, if maybe I am finally "high enough" to be pf.  ;)

My neuro ordered Depakote as the next meds. She was rather worried about my migraine attacks that have strong eye symptoms, everything from double vision to fuzzy vision. She also thought my losing consciousness a migraine symptom, not CH, but had no idea why it happened.

During the cycle my EDS symptoms have gone absolutely crazy - several dislocations in multiple joints a day and the muscle pain is getting really bad. I am trying to get disability aid, so I could get more phys.rehab and get some of the med costs covered with that. Having two rare medical conditions is somewhat problematic in getting good treatment.

But still, I am trying to enjoy the fact that I am finally getting my brain back, as opposed to being on Gabapentin or Dopeymax. Wohoo!

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

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.

Swelling is not something I've ever had with my CH, still holding out hope the D-3 proves the magic for you it's been for me.

Joe

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!  :P

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.  ;D

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will illustrate how to install a bubbler/humidifier on your tank, and what to call it when you go to the medical store. They're cheap and easy to use.

And tell Hubby you're going for the sexy "Bonnie Raitt" raspy sound! :-*

Joe

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?

Thanks for your post. As I sit here and take a day to myself...ha ha being disabled everyday is a day off,....lol
anyway I am nursing a migraine now and sitting here int he dark praying not to get a CH ontop....
And I read your post.
y son has EDS Type 1. If you dont know there is 4 types.
His aortic valve on his heart has a leak(common in EDS).
And he suffers from tension and migraines. (common in EDS but also herditary from me as I am CCH,Migraine and tension headache offciando ! )
He takes nothing for the EDS but only takes it for the side affects if he has a headache or in pain. He now just got $500 orthtics to help his feet. He has broken 3 bones on his finger by simply tripping. Its no fun his age being 15 with EDS. All the other kids are playing sports etc while he sits and watches. Probably because he spends so much time with me and cars and his own hotrod.
Its  a crappy disease at a young age especially. Its under rated like any disease. I pray he doesnt get CH.
Like me...he has lost friends because its an incivible disease(unless he shows hos stretchy skin or twits his bones to show off to the unbeleivers). Like me...lost friends telling him and me, the disease is fake.I teach him to forgive,be strong and be proud.
Sorry to hear of your EDS.
I tried googling a forum like this one for him but only a UK one came up and he never got approved. Site probably down.
best wishes my friend

(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.  ;D

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.

I have the same symptoms, particularly the neck issues.  When the monsters came back this time, they brought extra ammo.  This time, I have pain not only in the usual areas, but down the back of my ear, into my neck and radiating across the top of my shoulder.  You can actually see the difference in the muscles on the left and right side (my demons live in the right side).  The spasms are relentless.  I awoke several times throughout the night of course and the last time I grabbed a flat-style massager and concentrated on the back of head at the skull base, behind my ear and really focused on the large muscle running down the back of my neck and across the top of my shoulder.  That did work.  Well, at least for a while.  I also try to "stretch my neck by rolling my head etc.. but this seems to aggravate the pain.  I feel and hear crunches, pops, grinding etc.. I must add I have had a cervical fusion and discectomy at c5-6 and the levels above  and below are now requiring surgery.  I am sure this could be part of the new issues I have.  I hope to get to the neurologist late this week or early next and I will pass along any helpful information. :-[

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.

Hey, remember I mentioned my son had EDS type 1.
He was officially diagnosed with Chronic migraines and tension headaches. I am praying to god he doesnt get Cluster Headaches.
My son is in agony 24/7 with his EDS and has chronic migraines as I do too.
God Help us

So currently I am in a constant state of headache. The bloodpressure meds my neuro gave me keep me sorta light headed and dizzy until I drink a bunch of caffeine or eat a ton of salt.

I have migraines all the time.

My cluster is on a rotation of 1 day pf, 1 day getting kip 1-2 hits and 1-2 days of full on clusters.

Last thursday I got the jackpot. Cluster AND migraine at the same time. It hit in matter of minutes in full force, and even though the oxygen gave me relief from the cluster I had that muthaeffing migraine still there. So by the time I got a nasal spray in hand, energy drink in the other the cluster decided to make a comeback, but the combo killed everything after about 30 minutes of me not knowing up from down.

I think I found my new record of "painful state I don't want to ever be in again".

Totally wiped me out.

For most people a CH means the overwhelming urge to not stay still whilst a migraine has the opposite in wanting to be still. If you get both, which one dominates?

I get both CH and migraines. So far I've not had both at the same point in time, so I'd be interested to know what to expect when it does happen.

I had attacks all day starting from early morning, which is a sure sign the days going to be bad anyway. I had a migraine in the background going on, but it wasn't bad, mainly just a little light headed and nausea. I luckily never throw up in migraine, just a feeling of a really bad motion sickness.

But the cluster reigned supreme of the migraine, and when the kip 9 came, I retained the migraine's nausea and got weird double vision (my neuro calls it aura symptoms but they happen during the migraines, not before, like I've been told auras usually happen). So I grabbed the o2 at first, it helps with the pain in minutes, but until I get this "relief"-feeling I know the attack is not aborted. So I stayed on the O2, all the while the migraine starts the usual pain hits on the right side, like it jumps to the chance to be in power when the cluster is getting treated. After about 20 minutes I got the idea that the migraine was here to stay, so I figured my nasal sprays would work on that and finish the job on the cluster too.

It takes about 15-20 minutes for the spray to work on a cluster, and I gulped down an energy drink, and the cluster came back pretty fast after the "snort". I got the urge to start "nodding around" right after I took it and it got to the point that I am hitting my head on the floor. Meaning bad, bad attack. Funny thing is that I remember pressing my face to the carpet and remember the feeling of it on my cheek even though that side was getting numb at the same time.

The nasal spray killed the migraine in mere minutes but the cluster continued another maybe 25-30 minutes. I can't be really sure, I'm sure you understand.

After it winded down, I was like a wet rag. It took everything out of me and I slumped on the sofa.

On a side note, my cats always get really worried when I get that bad so once I got to the sofa, both them curled on top of me, sort of looking after me in their own way. I had a mental aww moment there..

Thanks for the description of what it is like to "enjoy" both at the same time.

One of our cats who is normally scared of his own shadow at times is really caring when I get a CH or bad migraine. He just doesn't want to leave me alone plus if my supporter isn't around he will go fetch her just like Lassie used to do in Lassie films.

Just have your doctor write you a prescription for oxygen, it should not take long for you to get it, have it on 8 to 10 and inhale for 20 minutes, that should be a great help.  Sometimes mine is on longer as it takes me about 10 minutes to wind down from the pain and inhale properly.  Good Luck!


Linda_Howell wrote on May 6^th, 2013 at 1:17pm:

Quote: or the constant opioid use Just so you know.  In most cases, opioids=rebound headaches.

goldenlady wrote on Feb 10^th, 2014 at 10:34pm:

Just have your doctor write you a prescription for oxygen, it should not take long for you to get it, have it on 8 to 10 and inhale for 20 minutes, that should be a great help.  Sometimes mine is on longer as it takes me about 10 minutes to wind down from the pain and inhale properly.

Have you tried using a higher flow rate? Like most people who have tried it I found that at 15lpm I can abort in about 12 minutes whilst at 25lpm I can be pain free in under 5 minutes. This means that I use less oxygen and get pain free a whole lot quicker.

I am on oxygen. I take it at 25lpm an it still takes me 15-20 minutes to abort a regular cluster attack.

My most recent problem has been those mysterious migraine attacks where I pass out or fall asleep and then wake up a little later with a kip 7-8 migraine. The passing outs can now happen several times a day, and I have been having lucid dreaming as part of it. I used to get that with certain strong painkillers, and it was on for a week after a surgery once. I have a hunch it could be basilar migraines, which I have suspected before, but my neuro has now put me under the diagnosis of chronic paraxysmal hemicrania - which means the neuro has no idea what is wrong or how to help. Yay.

I've applied for medical rehab where a physiatrist and a neurologist might consult each other to make heads or tails about my condition. Hopefully I should get some help next summer or early autumn.

I know all about the rebounds of painkillers but I am not in a situation to stop using them completely due to orthopedic issues in my legs and back. I have made massive improvements after I started the D3 regiment, but I still need them when the pain gets too bad.