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ralphyxz

I need help from the veteran survivors of CH

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I'm not sure where to begin. The first time I had a CH cycle was about 5 years ago when I was around 17. I am currently 22 years old and just started another cycle. It's been almost a month since my headaches have started. They usually happen every 2-3 days and last for about 2-3 hours. The pain is so bad. I'm not sure what to do because my family thinks they're just migraines, and no one really understands how painful it can be. I was at the point where I just wanted to shoot myself in the head to make the pain go away forever. I had to quit my job because of this condition. I recently read about the vitamin D-3 regimen and I was desperate so I bought the vitamins listed in https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people

These were the vitamins I bought:

 NOW Vitamin A 25,000 IU , NOW Vitamin D-3 5000 IU, KIRKLAND Fish Oil 1000 mg, NOW VITAMIN K-2 100 mcg,  KAL Magnesium Glycinate 400

 

I'm not really sure if that's supposed to be everything but I was so desperate I just bought everything I could find. Does anyone know when I'm supposed to start seeing effects from this regimen? I'm on my third day of drinking these vitamins but I've still been getting my headaches (though they've been less painful). Also can someone tell me an estimate of how much oxygen therapy would cost? Please help me out. Thank you so much for the time

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Batch has modified the regimen a bit over time, but I believe the basics are still what is listed at the bottom of the fifth page (which has the page number "2" because it's the second page of the second section -- it's the fifth page overall) of this document: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708  It's also the chart a little way down on this page: https://clusterbusters.org/forums/topic/1308-d3-regimen/     It does not look to me like you have the right stuff at all, and you need to stop the 25,000IU of Vitamin A right away.  How soon you might see results depends in part on how low you blood vitamin D is, among other things.  Usually it's at least a couple of weeks, but for some people it's quicker than that.  Read in either of the two files I linked you to about "loading" to ramp up your D level faster.  You can send a message to Batch by clicking the envelope icon on the top right side of the page and typing Batch into the "To" line.  He's a great guy who will be happy to help you.

How much O2 will cost also depends on a lot of things, including what your insurance coverage is.  You either need to get a prescription from a doctor for O2 or set up a system using welding oxygen.  Very different initial and ongoing costs associated with each of those.  Having O2 will greatly reduce the desire you state to harm yourself.  When you get started on it, get back to us and we can help you.  

In the meantime, I'd urge you to read this whole file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   There are things you can do right now to reduce your suffering.

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Getting on the D3 is the fastest thing you can start to do on your own. Do you have a doctor or headache specialist you see? Getting the oxygen setup would make a world of difference in how you feel and you most likely will not have the 2-3 hour hits. Oxygen if used correctly can abort a hit in under 20 minutes. I down a 5hr energy type drink on my way to the oxygen tank to slow down the ramp up time of my clusters. 

Other things you want to look at on this site are ginger, ice, hot foot bath, exercise. these are things that cost little to nothing and you can start today at home

Busting is another option you can look into, this will take a little more time but has worked wonders for a lot of people. 

Poke around in all the forums and dont be afraid to ask questions. 

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Guys, first posting...perfectly healthy 70yr old I started mild HAs in March thinking allergies...kept going and weeks later I end up at UF Shands with diagnosis of CH.  meds are Depacote and high doses of verapamil and indomethine.    Do I have hope at this point that it still may be episodic?  The thought of chronic just deflates me.  Still having HA everyday

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That's rough, Ken'.   I don't think they're sure it's CH, or they probably wouldn't have prescribed indomethacin, which doesn't treat CH but a condition that's a CH "lookalike."  

You are getting three preventive medications and no abortive.  That's pretty weird.  Two of them, or all three of them, can make you feel like crap in various ways.  You weren't prescribed either oxygen or some kind of triptan, such as Imitrex, for stopping your attacks?  No attempt to try prednisone while the preventive cocktail takes effect?  When you say "high doses," what were the actual dosages?  (I'll bet they're not high for treating CH.)  Are they monitoring you -- both Depakote and Verapamil should be monitored in the first weeks, for different reasons.

Get on the vitamin D3 regimen.  GET OXYGEN.  READ THIShttps://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

What are your actual symptoms?  Can't be still during an attack?  Eye red, runny?  Nose runny?  Pain where?  Pain when?  How long?  Shands has a good general reputation, but most docs suck at treating CH.

Edited by CHfather

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^^^^^^^everything CHf said!...so I'll repeat for emphasis...

….that is a weird and potent mix yur on....if the Indo works it changes your diagnosis and you can drop 2 of those right away....be aware of potential stomach issues and talk to your Doc about remediation measures...problem now being you won't know which of the 3 is effective. normal practice is to try the Indo first and alone to RULE OUT hemicania continua....

...if truly CH....GET  OXYGEN  (the BEST abortive)….it has changed/saved many a clusterhead's life and sanity (decades ago for me)...add an energy drink (minimum 100 mg caffeine/1000 mg taurine) at the first sign of a hit improves efficacy for me and many...

NOTHING to lose with the D3 regimen (except possibly ALL other measures B))...and its good for ya CH or not....

...totally understand the fear of 'chronic'...I was same..... but having been both, the difference was just attitude...once ya got a plan and the tools it's just different forms of the same beast to manage...was episodic for 23 yrs, it helped me to think of episodic as just being "chronically periodic"....perhaps just a semantics game, but "it's all in yur head" anyway, right?

Best

Jon

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Hi Ken,

Do you respond on Sumatriptan or Zomig nasal spray ? If yes, then you can safely rule out hemicrania as that usually don't respond to triptans. Also keep in mind that hemicrania is rare. The continua version is a bit more common but then you should have pain 24/7. If you have the paroxysmale variant, that is like the lottery you won :) as only 1/40000 has this and 2/3 are women. Paroxysmale hemicrania is always chronic. If it is CH, you can question the Indocin as it is not relevant here.

Do not get too much fear of being chronic. Chronic has no remission of 3 months or more but the number of attacks in chronic patients can vary strongly from multiple attacks every day to just a few attacks per month.

I have both migraine and CH but I am labeled chronic as the CH follows the migraine pattern (2-3 subsequent days per week during the weekend). On the other hand my migraine is now following the 1,5 months CH remissions I have in both March and September... it is all very weird to see how these conditions can take over characteristics from each other.  

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