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chrism
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Posture?
« on: Apr 18th, 2008, 10:28am »
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Firstly I want to say a big thank you to this site and all its members. 3 years ago I started a big episode right before my wedding. Gloira found the site and I had the first correct diagnosis of my life and the ergotmine saw us through our big day.
Then, last September, when the attacks started up, the ergotomine, while helping a little, made me nauseus and made my heart race. After 10 weeks I realised I'd gone chronic and it must be ergotomine-dependency, so a week of horrendous cold turkey later- oh no, still chronic. In desperation I went to a physio friend of my sister in Edinburgh. Bear in mind, I was getting worse and had a low grade attack as I very sceptically opened her door. One look at me and she diagnosed- bad posture, neck, shoulders and, in fact jaw. She gave me exercises and a few minutes' massage of my neck. There and then the headaches stopped. She also had me change to sleep on my side, propped by pillows, a lumber support in the car, cushion behind me on the sofa, sitting better at the computer, you can imagine the stuff, and she recommended I start tai chi or yoga. She thinks there's a posture component in every headache  but who knows? I still awoke to attacks the next week but leapt out of bed and furiously did my shoulder rolls and wow- the pain eased away.  
Then at the end of March I had another episode start and thought- well that posture stuff was bogus- but then I relised I'd let the exercises slip, as you do without the pain as a reminder, so I got wired in again and I felt the shoulders free up and no more attacks. The challenge had been, when an episode starts, the attack tenses up all the abaove and even throws my neck out, as well giving all the tension you all know about. One strange thing was, the 1 and a bit headaches I had had were left sided. They've never started on the left before- something had definitely happened.
Background- I have had ECH attacks for 15 years, since I was 18. The usual tale of misdiagnoses, I'm now immune to all anti-biotics, had my sinuses drilled (nasty) and generally had a rough time. Many many head injuries playing rugby must have been a factor- though they do fit the neck thing as well). From every 6 months, 6 weeks, at the clocks changing through college (stress a contributor I think), they fell to every year/18 month and in hindsight I see that starting lithium was a big factor. I aslo saw a friend's phsio in Germany but only for a few minutes as a joke, he knew nothing of me and expected to see my friend laid out on his bed. I only mention it as it was spooky. 3 minutes look at my back then "you have headaches, yes" er, yes "when did you first have them?" In New Zealand when I was 18, "Ah, you have close ties to your mother yes?" Er...yes..(I was living at home, a farmer, at 26) "I think you must, how you say, loosen the ties". He gave me a couple of exercises too but I didn't think a lot about it. I do think they helped some, (and I moved across the road!).
Now I know what you'll be thinking. We'll see this guy again in 3 months asking for some serious injectibles and that is probably right, I'm not going to count any chickens after so many false dawns. I do know for sure though that there's something in this. Modern life means none of us have the postures or physiques that nature intended, especially men. So if I can keep motivated and keep along to tai chi it can at least not do any harm.
That said, having yourselves at the click of my mouse will always be a massive help after all the years of feeling isolated and misunderstood. Best wishes all.
For reference, my physio's website is www.rehab-physio.co.uk, but it's a bit of a commute from Ohio!
Yours
Chris M
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Re: Posture?
« Reply #1 on: Apr 18th, 2008, 10:50am »
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Ummmm Okeydokey.
 
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Re: Posture?
« Reply #2 on: Apr 18th, 2008, 1:48pm »
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Chris
 
I'm glad that whatever all of this you are doing is helping you.  
 
But, my first question is, have you been officially diagnosed by a neuro, or headache specialist that you do, indeed have CH?  There are many other problems that tend to mimic the symptoms of CH, and only a proper diagnosis can determine exactly what you have.
 
Second question, you said your headaches started up again last September, and after 10 weeks you realized you had gone chronic.  Yet later in your post you say that at the end of March you had another episode start.  Did you have any, and I mean ANY pain free time from September to the end of March?
 
Before I can accurately post the printed medical definitions of "chronic" versus "episodic", I'm asking my CH family members to point me to the correct links.  But, in my recollection a chronic CH sufferer typically has no more than just a few days of pain free time in a year.  Please, anybody, correct me here.
 
I am diagnosed as episodic.  My longest cycle lasted 16 weeks, and then I am pain free for anywhere from 12 to 18 months.  Now, other episodics have made much longer cycles than mine, yet they still have breaks of pain free time, long enough to label them as an episodic rather than chronic.
 
Before you label yourself as "chronic", I'm asking some of our diagnosed chronic CH members to explain what the life of a chronic CH sufferer really is.
 
No offense in my post is intended.  I just don't think you really know what you are talking about and I'm not sure you have a true diagnosis yet.
 
Please keep posting, and above all, read everything you can on these boards.  Check all of the links to the left of your screen.  Learn what CH is, what are tried and true established methods of combating the pain of CH, what other sufferers have learned through decades of living with this pain.
 
Again, if all of these pillows, sitting, massages, etc are making a difference for you, by all means, keep doing it.  But, please also educate yourself on CH, because all of these methods have been tried again and again by suffers, and they still suffer from CH.
 
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Re: Posture?
« Reply #3 on: Apr 18th, 2008, 2:05pm »
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Chronic = one year or more without at least a 30-day break pain free.
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Re: Posture?
« Reply #4 on: Apr 18th, 2008, 3:25pm »
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Thanks, Brew,
 
Exactly what I was looking for.
 
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Re: Posture?
« Reply #5 on: Apr 18th, 2008, 6:43pm »
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Chronic or not, there may be something to be said about tension. When I went for my physical last week, my doctor could not believe how tense my neck and shoulders were. I have to admit that I always feel alot tighter during a cycle. Doing stretches or getting a massage may help a little. Next time I get hit I am willing to add few neck rolls and stretches to my abortive measures. After all, it won't cost me a penny! Cool
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Re: Posture?
« Reply #6 on: Apr 18th, 2008, 6:54pm »
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Which came first: the tension or the cycle?
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Re: Posture?
« Reply #7 on: Apr 18th, 2008, 7:27pm »
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The tension in the neck and shoulders during a CH attack is caused by the inflammation and activation of the parasympathetic nerve chain and the cluster ganglions. On top of that the person is tense up all over trying to fight the pain. Once you have a few attacks close together the tension stays as the muscles do not have enough time to relax and heal.
 
If not treated by massage and/or stretches, the tensed muscles ( mainly the trapezius ) can pull on to the neck ( they attach to the base of the skull ) causing various types of tension like headaches or even CH shadows.  
 
My husband used to have this tension quite bad until he started to use ice to apply to the neck, shoulder and head, which apart from calming down the firing nerve ganglions also reduce inflammation in the muscles.
 
If you can afford to go to a physiotherapist its great, if not try applying ice/heat each time you get a hit and you may find the tension is much reduced.  
 
I dont think any muscle exercises /stretches will stop a full blown high kip hit.  
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Re: Posture?
« Reply #8 on: Apr 18th, 2008, 7:32pm »
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on Apr 18th, 2008, 2:05pm, brewcrew wrote:
Chronic = one year or more without at least a 30-day break pain free.

 
With or without meds, thats what they added to what you said, Brew.
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Re: Posture?
« Reply #9 on: Apr 18th, 2008, 8:12pm »
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on Apr 18th, 2008, 7:32pm, Jonny wrote:
With or without meds, thats what they added to what you said, Brew.

So, it would be:
Quote:
Chronic = one year or more without at least a 30-day break pain free, with or without medication.

Is that correct?
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Re: Posture?
« Reply #10 on: Apr 18th, 2008, 8:28pm »
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    Quote:
After 10 weeks I realised I'd gone chronic

 
  Nope, 10 weeks does not a chronic make.
 
    Quote:
One look at me and she diagnosed- bad posture, neck, shoulders and, in fact jaw. She gave me exercises and a few minutes' massage of my neck. There and then the headaches stopped.

 
 
Wow...so that means then that you were getting hit as you walked in the  office then?   If not, please explain further.
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Re: Posture?
« Reply #11 on: Apr 28th, 2008, 2:11am »
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I think everyone on the board has tried every move and posturic {?} trick known to man, then a few more.  I wish one would work.  I've thought several times that a certain move or the way I held my head stopped 'em, only to find out on the next visit of the beast that was crap.  I've been episodic for 28-29 years.  After one run of over 4 months, thought I had gone chronic, and ended up hooked on narcotics.  Didn't know if I was having headaches or not.  Getting off 200mg of Oxycontin a day is almost as bad as having the beast.  Whatever "brand" of ha you have, I'm glad that works for you.
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Re: Posture?
« Reply #12 on: Apr 28th, 2008, 9:50am »
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Hi Chris,
 
I'm glad you have found something that works for you.
 
I practice yoga regularly.  My flexibility, sleep patterns, posture, back pain and general health have really improved.  However it hasn't done jack for my CH.
 
-Dennis-
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Re: Posture?
« Reply #13 on: Apr 28th, 2008, 10:12am »
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Sorry not to post sooner. I just haven't had a moment with the new baby/toddler combo. I didn't mean to be challenging- just to say what had happened to me in case anyone found some use from it. Definitly CH. I'm pretty smart so first sight of a CH description tallied with my experience over 15 years to the last letter. The CH has since been confirmed by Dr Neumann, Scotland's foremost headache and CH expert. I said I went chronic. More accurately, I went from always having a defined 5-6 week pattern to a point where I knew absolutely that my condition was worsening and, at 10 weeks, I was in a different situation from any previous episode and that this had almost certainly been triggered been triggered by the ergotomine. I'm glad I didn't have to let it run its course so as to verify my status.
I am conversant with some of the current situation concerning CH treatment. I would hope also that one day there will be a cure that is a cure, ie the discovery of cause and then prevention. I would caution against looking only to the medical world and pharmaceutical companies for salvation. While it is great that they at last recognise the condition, they also have an interest in our need for them.  
I'm not going to make any apologies for my story and I know it is early days. 6 months ago I felt the same as anyone. Then someone challenged everything I believed, told me to reject ever taking on a label. I'd seen phsios before but none gave the advice this one did, a holistic one born from yoga etc. It would be much more easy and welcome to read a post saying "CH caused by peanut allergy" or, cured by "drinking seaweed tea". This physio pretty much told me " you are part of the problem, you have to fix it". If that is helpful for anyone at all then great, that would be wonderful. If not I hope other things do help. Only one reply to my post seemed interested in any way in this central area of interest, ie tension, shoulder/neck/jaw and possible feedback through headaches. It seems at least an interesting thing to think about. A survey of CH sufferers investigating if it could be a possible contributory factor would at least be useful in ruling it out. Just picking holes in my authenticity/terminology before dismissing it doesn't seem the most productive way to go.
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Re: Posture?
« Reply #14 on: Apr 28th, 2008, 10:35am »
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glad you've found some relief....but if you believe that your miracle is one that has not been pursued by many others with Cluster Headache and found to be deficient by most of us for our CH then you might find a way to get over yourself.
 
the world happens inspite of you and your thoughts today.
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Re: Posture?
« Reply #15 on: Apr 28th, 2008, 12:35pm »
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Really glad this is working for you.  When I was episodic I sought out a massage therapist who did deep tissue work and a chiropractor (who was a personal friend of mine).  They worked as a team.  Certainly there was an incredible amount of tension in my neck, shoulders and arms and hands.  That was from the repeated hits and the anxiety of waiting for the next one.  
 
Did these measures help me?  I could, and am tempted to, say that they relieved a great deal of weight from my left shoulder-the one that supports my purse.  It did get pricey.  However, I don't want to discount the benefits of alternative approaches.  
 
While in cycle, the deep massage did not help, but it wasn't that relaxing kind of massage, so I usually didn't get hit.  However, when I got a good Kip9 in 6 minutes flat, my massage therapist freaked.  Said he'd never seen anything like that, my body temperature actually spiked and he could feel the ganglion lump.  He became a life-long seeker of treatments for CH.  An incredibley compassionate and proffesional massage therapist.  After my cycle ended, I got alot of relief from the left over tension.
 
The chiro had never dealt with CH, but I went to high school with him and had never know him to be a scam artist.  When he adjusted my C1 and C2 verterea I could actually feel the blood rushing to my head.  And that was not good.  Triggered CH and he also had the chance to see a Kip9.  He was in tears.  We three worked together to find some reasonable plan.  
 
The cycle ended, 5 months after it started.  Did either of these therapies help my clusters?  No, not really.  Arethey helpful between cycles.  Sure.  Or they would be, if I had a "between cycle".  I have been chronic now since Feb 2005, 3 years and about two months.  Only pain free days were when I had the flu (thank God for small mercies).  
 
So chronic, for me, means at least three CH daily.  Everyday. For over 3 years.  I practice Tai Chi, take my vitamins and brush my teeth daily  Wink  
And I live life between the hits.
 
Best wishes,
kathy (who is very sorry this post was so long-gotta back off on that coffee  Shocked)
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