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My cluster season is set to start soon.  Not excited get a feeling of dread just thinking about it. I want to figure out my options before they hit so I'm prepared. 

What do you guys do? 

I want to know what helps and works for you guys. I know my options are: oxygen, busting, or living through it.

 

Last year I couldn't try busting because I was pregnant. I did take a daily dose of CBD and that seemed to help.  

I'm so happy this forum exists so we can all be there for each other and know we're not alone. 

Also anyone from UT that knows a good DR to go to?

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On 11/20/2020 at 8:13 PM, Patheticfern said:

I did take a daily dose of CBD and that seemed to help.  

Hi Patheticfern,

May I ask you what doses you take ? I both a 10 ml bottle a while ago that has 15% CBD oil. The seller told me this is the lightest form of CBD for medical application. Can go up to 30 %. For me to have a little bit of an effect, I need around 20 drops while the guy in the store advised 3 drops per 3 hours... so much it makes me unwell. Maybe I need a higher concentration ? And how do you dose that ? Once a day or several times a day ?

I have chronic paroxysmal hemicrania and chronic migraine. For the CPH, I need to take indomethacin to get it under control. Unfortunately, indomethacin makes my migraine attacks worse and resistant against triptans. I am currently experimenting again with topiramate. It has a clear effect on both headaches but I am too sensitive to it and too many side effects. 

siegfried

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Thanks Denny for sending me a note.

Hi Fern.  My doctor is Alyssa Lettich at Intermountain Health Care.  801-507-9800 at the hospital in Murray.  I think she is good.  Her first order of business will be to get you an O2 prescription.  It amazes me the struggle many people have with that no-brainer.  Appointments are usually a couple of months out.  But, she tells the receptionist to get CH patients in immediately.  Not all receptionists receive the memo, so ask them to check with the doctor and call you back if they keep telling you 2 months.

I like that you're planning ahead.  I need to follow that example!  My last cycle lasted 2 years and ended in March.  I thought I had turned chronic.  Now half my head dreads the spring when It'll likely begin again, and the other half is in denial.  That half thinks I've never had CH and never will.

If you need anything, bottle of O2 on a Sunday or whatever, find me on Facebook (Ed McDonald).  I don't come on this site regularly.  It sure has changed since I last logged on.  I think I'll do some exploring here today :)

Ed

 

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On 11/20/2020 at 12:13 PM, Patheticfern said:

 

I want to know what helps and works for you guys. I know my options are: oxygen, busting, or living through it.

There is also D3.  I started it last fall and then stopped.  I don't know if I was part of a small percentage of people that have a bad reaction, or if it was a coincidence, but I had a big spike right then.  I know it helps a lot of people.  I started taking it again after my cycle wound down and still am.  I'm hoping it may stop or delay the next one.

Anyone else, do you take the D3 regimen all the time, in cycle and out?

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I bought some stuff from CB 7 yrs ago. Hubby and I did such a bang up job that it turned into green mush. Thinking of trying again now that the insurance company won't refill my imitrex during mid cycle. 

Ready for this busting methid to hit fda and be put on the market for CH. 

 

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10 hours ago, ex_spud said:

There is also D3.  I started it last fall and then stopped.  I don't know if I was part of a small percentage of people that have a bad reaction, or if it was a coincidence, but I had a big spike right then.  I know it helps a lot of people.  I started taking it again after my cycle wound down and still am.  I'm hoping it may stop or delay the next one.

Anyone else, do you take the D3 regimen all the time, in cycle and out?

Batch's D3 from ch.com? 

Didn't work for me.

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21 hours ago, Siegfried said:

Hi Patheticfern,

May I ask you what doses you take ? I both a 10 ml bottle a while ago that has 15% CBD oil. The seller told me this is the lightest form of CBD for medical application. Can go up to 30 %. For me to have a little bit of an effect, I need around 20 drops while the guy in the store advised 3 drops per 3 hours... so much it makes me unwell. Maybe I need a higher concentration ? And how do you dose that ? Once a day or several times a day ?

I have chronic paroxysmal hemicrania and chronic migraine. For the CPH, I need to take indomethacin to get it under control. Unfortunately, indomethacin makes my migraine attacks worse and resistant against triptans. I am currently experimenting again with topiramate. It has a clear effect on both headaches but I am too sensitive to it and too many side effects. 

siegfried

I'm not sure the percentage. I take 1/2 mL 2x a day. Then I smoke CBD or take another dose if I feel an onset of a cluster.   

This is the CBD I use.  https://cbdamericanshaman.com/water-soluble-full-spectrum-hemp-oil-30ml

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