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Back after 4 years pain free / QUestions - Concern (Read 635 times)
CaroleA
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Mallorytown, Ontario
Gender: female
Back after 4 years pain free / QUestions - Concern
Jul 10th, 2021 at 9:28am
 
So my last cycle was April 2017 and I'm into week 3 of this most recent cycle. 
This cycle I'm experiencing multiple CH's every night.  In the past it was 1/night
The last 5 nights they have been almost every hour. 
Ex: Up at 1, on the mask till about 1:25-1:30, go back to bed, up again at 3 and so on.  I'm exhausted to say the least.
My 02 is set at 15 lpm and I have a non-rebreather mask.  I get up right away and I'm usually on it for 15-25 minutes, with the normal 10 minutes after the pain subsides.
I'm taking the vitamin/supplement and am on week 3 of the recommended doses (I take D3 year round)
I do take Verapamil, current 120 mg/day but will start adding 1/2 a tablet and monitor progress.
I will be adding 10 mg of Melatonin starting tonight.
I do smoke (avg 8-10 cigarettes/day)
Female / 65 yrs old
Canadian health insurance does not cover Oxygen therapy for CH's, so it's costing me $49.95 CAD per tank, I have 3 now sitting in my living room.  So not cheap!

Questions/Concerns
1 - I'm concerned about adding an additional 120 mg of Verapamil daily. My script is for up to 2 daily but I'm concerned with my blood pressure dropping too low.  Reassurances would be helpful.
2 - Has anyone else experienced a drastic change in the type of CH's they get?  Meaning going from only ever having 1 per night to almost every hour?

This is kicking my ass, I'm so sleep deprived I can barely function right now.  I'm 65 years old, but healthy otherwise.  I run a full time business at home working usually 8-10 hrs/day and I'm just trying to do everything that I'm supposed to do to get through this.

Thanks for any advice in advance!

Carole (from Canada)



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AussieBrian
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Cairns, Qld, Australia
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Re: Back after 4 years pain free / QUestions - Concern
Reply #1 - Jul 10th, 2021 at 9:19pm
 
G'day, Carole,  and sorry you had to find your way back here.

I can't help with the medication questions but as to frequency of attacks,  have you considered it may be another type of headache and not CH?

One that springs to mind is called Chronic Paroxysmal Hemicrania (CPH) which isn't half as awful as it sounds.  Here's a link you may care to look at...

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Discuss it with your doctor, perhaps, as he may suggest 10-12 days on Indomethacin which is very, very effective even though it's mostly useless for CH.

Please let us know how you're getting on because we care,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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CaroleA
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Mallorytown, Ontario
Gender: female
Re: Back after 4 years pain free / QUestions - Concern
Reply #2 - Jul 11th, 2021 at 2:08pm
 
Thank you Brian down under.  I've just read the Webmd page about it and WOW......
The reason I posted here is because this is not my usual cycle of CH
I am now very glad I did.
Going to speak to my Dr about it and I will definitely get back to you here!
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