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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> What worked for me
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Message started by teezlebop on Feb 20th, 2014 at 4:58pm

Title: What worked for me
Post by teezlebop on Feb 20th, 2014 at 4:58pm
Hi everyone,

I have had cluster headaches since the age of 16 and went undiagnosed until the age of 25. Clusters are headaches that take you to a whole different level; excruciating pain on the right side that reminds me of a circular saw.
What was affective for me is chewing ice, rocking back and forth and squirting pepper sinus spray on the onset which helped reduce the pain. The last time I had one my son was taking me to the hospital and I had to hang my head out of the window to get the cool air. I never put an ice pack on my head and pain relievers were not affective for me. My clusters would eventually become immune to the medicine prescribed; I would have to change it with every cycle.
I am now 57 and my biggest fear was having clusters when I was in my eighties, I knew that my body would not be strong enough to fight them off. I was always afraid of getting an aneurysm. I have not had one now since I was 50 and my doctor told me it was because I am menopausal. I pray that they stay away and pray that they soon find a cure for these vicious useless pains in the head!

Title: Re: What worked for me
Post by Batch on Feb 20th, 2014 at 7:31pm
Hey Teezlebop,

Cool handle...  Welcome to CH.com.  You've come to the place.

Lots of great information here from long time CH'ers with a total collective experience living with and controlling this disorder adding up to many thousands of years.

One of the recent methods of controlling CH that's evolved over the last three years is called the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 Fish Oil and all the vitamin D3 cofactors: calcium, magnesium, zinc, boron, vitamin A (retinol) and vitamin K2.

You can read about it at the following link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

You can find user comments on this regimen at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Well over 400 CH'ers here at CH.com are taking this regimen...  81% of them have reported a significant reduction in the frequency, severity and duration of their CH...  77% of them have reported pain free 24 hour periods and 55% of them report they are completely pain free. 

This regimen appears to have equal efficacy between both episodic and chronic CH'ers...   I can also safely say based on their comments on the benefits of this regimen, that they're much less objectionable than squirting pepper sinus spray up the nose...  and I've tried pepper sinus spray.

Take care and please keep us posted.

V/R, Batch

Title: Re: What worked for me
Post by maz on Feb 21st, 2014 at 7:33am
Hi teezlebop
I was 57 and menopausal when mine started and I'm 63 now. I too, fear getting old with this condition. I picture a scenario of being very old, unable to communicate properly for myself, and stuck in a nursing home where no one understands, or worse still - don't care. I know it's a miserable outlook but when I am in so much pain it's hard to be positive. My meds are not reccommended for people over 65 so 18 months from now I may have to start all over again.
However, do seriously consider the info from Batch. It's worked for so many people there must be something in it. Also, I have just started having oxygen therapy, which seems to be every ones favourite abort method, and I must say it's miracle juice.There is a yellow highlighted tab on the left of your screen titled "oxygen info" which will tell you all you need to know. A high flow (15 ltrs per minute) and the correct mask will take care of all your pain.
Read all you can here on these boards. This site has saved my sanity and life doesn't always look so grim now.

Title: Re: What worked for me
Post by Mike NZ on Feb 21st, 2014 at 3:41pm
I see that Maz has now been converted to the church of oxygen :)

Don't worry too much about the fact that quite a few drugs are not recommended for those over 65. Drug testing is normally mainly done on healthy volunteers normally aged between 18 and 65(or so). So often they have no test data for those under 18 or over 65.

What should happen when you get to 65 is that there will be an evaluation done for each medication that you're on, comparing the benefits to the risks before deciding what is the best option.

Title: Re: What worked for me
Post by maz on Feb 21st, 2014 at 4:25pm
Yes Mike I'm converted. The thing that gets me most is that I've never actually been offered it by the doctors. Sumatriptan either. And they are the two things that would have saved me 5 years of hell. I had to find out for myself (from here) and ask for it.
I just don't get it. Whats WRONG with these doctors. You would think a neuro would know even if the GPs don't.
So once again, to you Mike, Batch, Brian, Hoppy, Guiseppi and so many others who have listened to me whine and chimed in with support - Thank you.

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