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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › I dont understand

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I dont understand (Read 1155 times)

Bonnie lee

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I dont understand
Aug 2^nd, 2012 at 6:33pm

this new type of headache i am getting. This is the second time in the two years i have had the clusterheadaches that i have had this happen.
I get the normal symptoms. the stabbing pain behind my left eye!!!! But when i am perfectly still it stops!!! If i move it starts again!!!
Last night i had to lay perfectly still. i couldnt move at all. Not a muscle for about a good hour and a half. If i moved it felt like i was dying.
If i didnt move there was no pain at all.
Like i said this is the second time this has happened in two years. Any other time the headaches are normal clusterheadaches.

I dont understand it. I told the neurologist at john hopkins when it happened the first time and he didnt say anything just changed the subject. Going to the neurologist again on the 13th. Gonna tell him.

Its just so weird. Huh

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: I dont understand Reply #1 - Aug 3^rd, 2012 at 10:33am I don't know Bonnie Lee, it isn't something with which I am familiar. I know it's painful and worrisome, but I was reminded of the Marx brothers line: doctor, doctor, it hurts when I do this; then don't do that. So for now, take the relief by being still. Hopefully your neuro will be more helpful. God bless. lance
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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: I dont understand Reply #2 - Aug 3^rd, 2012 at 9:57pm Same as lance... I have never been able to sit still during a Cluster. And laying down was totally a big no no. Please keep us posted. Coach Bill
Back to top	boy i cant wait till it's my turn to give him a headache. paybacks a bitch IP Logged

Skyhawk5

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Re: I dont understand
Reply #3 - Aug 3^rd, 2012 at 11:46pm

For me when getting a hard attack, I stay as still as 'possible' and it helps me. Most folks cannot sit still.

I'm moved by what you describe. What meds are you taking? From what you are experiencing, seeing a good Doctor may be in order.

You will be gifted, if all you need to do is sit still for every attack. I'm going to try it.

Don

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: I dont understand Reply #4 - Aug 4^th, 2012 at 8:08am Maybe some form of TN? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!" IP Logged

Bonnie lee CH.com Veteran Offline I Love CH.com! Posts: 131	Re: I dont understand Reply #5 - Aug 4^th, 2012 at 12:13pm I was just looking at trigeminal neuralgia Bob. I wonder if it is possible to have both the cluster headaches and that because it sure hurts to move at all!!!! The symptoms sure add up!!!!
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Bonnie lee

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Re: I dont understand
Reply #6 - Aug 4^th, 2012 at 12:21pm

Sky hawk,
I am taking topamax 200mg daily and Veramipil 250mg daily, plus batches vitamin regimen. And a birth control pill. LOL Don't think you want to add that to your list of meds!!!!!
Oops forgot too add sumatriptan injections and nasal spray. Was using the oxygen with the no rebreather but it really didn't do anything for me. Sits here in my closet and collects dust mostly. Oops!!! And melatonin at night

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wimsey1

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Re: I dont understand
Reply #7 - Aug 7^th, 2012 at 8:57am

If you've addressed this before, I apologize, but is there a medical reason for the low doses? They don't approach therapeutic level for most CH sufferer's. And what was/is the max for your regulator? If that is also low (15lpm or less) you may not be giving yourself the most effective levels possible. I also believe O2 is not generally effective for TN, although I was diagnosed with that and CHs, and high flow O2 helped me with both. Prayin' for ya. blessings. lance

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Bonnie lee CH.com Veteran Offline I Love CH.com! Posts: 131	Re: I dont understand Reply #8 - Aug 7^th, 2012 at 12:22pm I have no idea why I am on such low doses of meds. I never questioned the doctors. Never even thought I was supposed to be on more. The oxygen I was on 20 lpm.
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