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Mr. S

New to this site. Help needed.

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Hi everyone, I'm new here so please excuse me, just discovered this tonight. 

I have been suffering with CH for over 10 years and the only thing I have is sumatriptan which takes forever to work and unreliable. I am currently in a two week cycle and have missed enough days of work due to this condition.  Can someone please explain to me what "busting" means so that I can try this.  I am willing to do anything at this point to prevent and abort these CH. 

 

Thank you very much. 

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Hello Mr S.

Welcome to the forum, sorry you have to be here.

You're Sumatriptan, is it in pill form or an injection needle? I've not used it myself, but I understand the self-injection needle works pretty quickly.

Also, talk to your doctor about high-flow oxygen. Again, I've not used it, but people swear by it for aborting attacks. It can cut a 3 hour attack down to 10 minutes or so. 

Also, energy drinks, Monster, Red Bull, even Mt Dew or coffee, can help reduce an attack or help with the after affects.

There is also a method referred to as the Vitamin D3 Regimen, which a lot of people find very helpful in keeping the beast away. It's perfectly legal and consists of over-the-counter vitamins and supplements. Worth looking into. 

"Busting" is the slang term we use for other methods, not so doctor approved, and not so legal. I won't go into details in the General Board, as it's open to the public. (Perhaps one of the kind moderators will move this to another forum sections?). But, if you look through the ClusterBuster Files section, you'll learn a lot about it there. The posts at the top of that page are a great place to start - UNDER CONSTRUCTION!! Welcome Newcomers! has a slight intro and links to key threads (DD is still working on it). Details of the D3 Regimen can be found  on that board as well. 

Mox

 

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4 hours ago, MoxieGirl said:

Hello Mr S.

Welcome to the forum, sorry you have to be here.

You're Sumatriptan, is it in pill form or an injection needle? I've not used it myself, but I understand the self-injection needle works pretty quickly.

Also, talk to your doctor about high-flow oxygen. Again, I've not used it, but people swear by it for aborting attacks. It can cut a 3 hour attack down to 10 minutes or so. 

Also, energy drinks, Monster, Red Bull, even Mt Dew or coffee, can help reduce an attack or help with the after affects.

There is also a method referred to as the Vitamin D3 Regimen, which a lot of people find very helpful in keeping the beast away. It's perfectly legal and consists of over-the-counter vitamins and supplements. Worth looking into. 

"Busting" is the slang term we use for other methods, not so doctor approved, and not so legal. I won't go into details in the General Board, as it's open to the public. (Perhaps one of the kind moderators will move this to another forum sections?). But, if you look through the ClusterBuster Files section, you'll learn a lot about it there. The posts at the top of that page are a great place to start - UNDER CONSTRUCTION!! Welcome Newcomers! has a slight intro and links to key threads (DD is still working on it). Details of the D3 Regimen can be found  on that board as well. 

Mox

 

Hi MoxieGirl!

Thank you so much for the quick response! Yes, the Sumatriptan I have is pill form which is probably why it is so unreliable. I have heard the injectable form works a lot better as well and of the benefits of oxygen also. But alas, my doctor only gave me this script for these tabs and a referral to a neuro which happens to be sometime in May :/. So in the interim I must seek relief like so many others, alternative methods.  I used to down monsters like candy but lately they had been unsuccessful.  I will check out these boards. Again, thank you for the help.  

Regards.

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Here is a link to the D3 regimen, which you should seriously consider starting right away: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Your doctor is, like so many, either stupid, lazy, or uncaring. Or all of the above. All s/he had to do was look up the standard treatments for CH and see that injectable sumatriptan and O2 are the recommended abortives.  Did you get no preventive?  Verapamil is usually the one given.  Also, a course of steroids can sometimes stop the pain for a while as the preventives kick in.  My daughter (the person in my family with CH) had a bad doctor, and she called around to walk-in clinics to ask whether they would prescribe injectable triptans (Imitrex) and O2 for CH. Found one, and got the prescriptions she needed. She did have a letter from a neurologist saying she had CH, so she didn't have to go through a diagnosis process, but triptans and oxygen aren't "drug-seeking behavior," so it might not have been that hard to have her diagnosis trusted.

You could set up your own O2 system in a couple of days using welding oxygen, as a significant percentage of people with CH do.  See the file in the ClusterBusters Files section called "Notes on Welding Oxygen."  As Moxie has suggested, there are a lot of potentially valuable things to read in that section.  Pharma things can be okay to get you through a cycle, but busting, O2, and D3 are a lot less toxic.

(My daughter found, very interestingly, that she had been overusing energy shots, which seemed to be making this worse after having worked well for a long time, and got good aborts with just strong coffee.)

Other possible helps for aborting.  Breathe cold air from an air conditioning vent.  Stand in a tub with water as hot as you can bear.  Take Benadryl (3 times at 25mg during the day and 50mg at night, or whatever you can handle).  Wish I could think of more.

 

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Mr S. 

Not sure if you live near a major city or not but most have a headache center at University hospitals, when my wife tried to get me in at one they told her I would have to wait a couple months for an appointment and she told them "you don't understand he doesn't have a couple months he has cluster headaches" once they heard that they imeadiatly told my wife they would get me in and cluster headache patients get VIP appointments. It's worth trying to find one because May is not reasonable for a cluster headache person. Most regular neurologist don't specialize in cluster headaches and can be frustrating to deal with because of thier lack of knowledge on the condition.. I drive an HR to see a good nuero.. 

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There is also FMLA that some company's are required to honor. This allows you to use up all you're vacation and sick time then go unpaid if needed while still keeping you're job.. It's an option until you can get you're clusters under control

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