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ocean

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Hello, I'm new here & need advice
Feb 24^th, 2016 at 3:17pm

Hello,
I'm new to the forum. I began having cluster headaches about 6 months ago & they're mostly chronic. I was dx by a neurologist who specializes in autonomic dysfunction. She mentioned the Zanaflex I take for muscle pain would help. It helps only a very small amount.

I also have severe Dysautonomia...

It's a complicated dysfunction of the autonomic nervous system and I read that cluster headaches are autonomic in origin.

I was reading about oxygen therapy on the forum, and see that it's a powerful vasodilator. Am wondering if anyone knows if it's okay to use oxygen with dysautonomia? I have both POTS (postural orthostatic tachycardia) as well as NCS (neurocardiogenic syncope).

Does anyone else with cluster headaches have dysautonomia or seen a neurologist who specializes in autonomic disorders?

I have to travel quite a long distance to see my neurologist & I'm not due to see her until May. I will ask her this question then but in the meantime I have a doctor who will prescribe oxygen, but I wanted to educate myself further before trying it.

Thank you for this forum! So much good information.

Ocean

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Batch

CH.com Alumnus

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Control The Beast With
O2 & D3 You Must

Posts: 3706
Bremerton, WA
Gender: male

Re: Hello, I'm new here & need advice
Reply #1 - Feb 24^th, 2016 at 3:57pm

Ocean,

Welcome to CH.com... You've come to the right place. We know what you're going through with your CH... and the good news is it doesn't need to be that way.

Dysautonomia on the other hand, is a horse of a different color...

Check with your primary care physician (PCP) for lab tests of your serum 25(OH)D, calcium, PTH (parathyroid hormone) and vitamin B12. I suspect your 25(OH)D is low... like less than 30 ng/mL (75 nmol/L).

Check your PM inbox. I've sent you some information that may help.

Take care,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Potter

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Re: Hello, I'm new here & need advice
Reply #2 - Feb 24^th, 2016 at 3:59pm

ocean wrote on Feb 24^th, 2016 at 3:17pm:

Hello,
I'm new to the forum. I began having cluster headaches about 6 months ago & they're mostly chronic. I was dx by a neurologist who specializes in autonomic dysfunction. She mentioned the Zanaflex I take for muscle pain would help. It helps only a very small amount.

I also have severe Dysautonomia...

It's a complicated dysfunction of the autonomic nervous system and I read that cluster headaches are autonomic in origin.

I was reading about oxygen therapy on the forum, and see that it's a powerful vasodilator. Am wondering if anyone knows if it's okay to use oxygen with dysautonomia? I have both POTS (postural orthostatic tachycardia) as well as NCS (neurocardiogenic syncope).

Does anyone else with cluster headaches have dysautonomia or seen a neurologist who specializes in autonomic disorders?

I have to travel quite a long distance to see my neurologist & I'm not due to see her until May. I will ask her this question then but in the meantime I have a doctor who will prescribe oxygen, but I wanted to educate myself further before trying it.

Thank you for this forum! So much good information.

Ocean

Vasoconstrictor.

Potter

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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: Hello, I'm new here & need advice Reply #3 - Feb 24^th, 2016 at 4:02pm Hello Ocean and welcome, Sorry that you had to come here but glad that you did. Stick around, you're in good hands. We know what you're going through -as regards your CH anyway-. This site is a god send for most of us and is the biggest source of CH knowledge you'll ever come accross. All the best
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Hello, I'm new here & need advice Reply #4 - Feb 26^th, 2016 at 9:23am It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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