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?

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.

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.

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!

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

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:


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.

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


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.

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. 

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.. 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?

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

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.?

Hoppy

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

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.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

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. 
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..