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ggolds5

WORRIED sick.

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I've been with my wife for almost 9 years. I've been through almost 9 years ( every 3 years like clockwork), of my wife's episodic clusters. Almost always in September. This time MAY. She's going on about 3 weeks of the worst period of clusters she's ever had since her 20's. I can't believe how bad they are. My old boss just so happens to be a neurologist and a headache specialist with a specialty in cluster headaches. That said, she's on Verapnamil, sumatriptan injections ( maddeningly scary about her running out). The only thing that helps her and takes them away. She also took Topiramate tonight for the first time. She just finished a round of Methoprednisolol. O2 tank, M tank in the bedroom 12 liter plus or minus. Then at the MD office he did a procedure putting a rod up her nose and squirting .... now forgetting, a numbing agent. Then 4 shots in the back of her head nerve block. There were a 2 day slight resbit and now every 2 hours, running low on sumatriptan. I stay up all night helping her. She had a bad sick to her stomach episode. That was awful. I feel helpless and worried sick. I hope to GOD this is winding down because she is losing it and so am I. Oddly enough she is still going to work every day, but going to the bathroom to take her sumatriptan shots. Night alarm clock is the worst , 2 hours into a REM period and jumps up in agony. WHAT do I do and what is there left to do. Please help with any advice. Anything now that can be prescribed that is new or experimental?. Is this episode ever going to end?. Exhausted and worried.!!!

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D3 Regimen https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people

This is a list of supplements taken in accordance to the regimen, clusterheads are likely to be vitamin d deficient (as batch has said who is the creator of the regimen) this is a VERY effective treatment, the success rate is high, above 80% success I believe, the regimen will reduce the frequency, intensity and duration of attacks or eliminate headaches completely, whilst not a cure, it is by far the best preventitve, it’s legal, no prescription, safe and a lot more effective and safe then prescribed medication for clusters, batch I believe is a chronic clusterhead, but has been pain free since 2010 or 09, I suspect he will chime in pretty soon

 

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I was recently diagnosed...and I’ll be honest, the treatment we get prescribed is not impressive, as your wife would probably know, the fact of the matter is, doctors and the health system are not on our side for the most part, we are on our own, your wife’s best chance of pain free living is cluster busters, the treatment I have found on here overlaps prescribed medication or surgery several times over in effiecncy, affordability, and practicality. Since this is on the general board, I won’t go into mm, or vitamin L, but I will say it is ALSO a very effective treatment, and is compatible with the d3 regimen, 2 birds with one stone...or in this case, 1 bird with 2 stones, I’d go to the theory and implementation board and ask about vitamin L and MM, that’s the place where we talk about it 

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D3 regimen is correct.  Do that. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708  (This is a slightly more direct link than the one Dana' gave you.)

Sumatriptan injections can be split, or they can be prescribed in ways that allow for lower doses.  Most people with CH can use 2mg to abort (6mg in the standard injector); some might need 3mg, but that's rare.  Some people get it in vials, with syringes, so they can measure out their own doses; some people get injectors with lower mgs of sumatriptan; some people split their injections. For info about splitting injections, read this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Oxygen at ~12 lpm isn't usually fully effective, particularly with a standard nonrebreather mask.  It sounds like your wife is not getting very good aborts a lot of the time.  Higher flow/better mask/better technique make a very big difference.  You want her relying a lot less on triptans.  It's widely believed here that they can cause rebound attacks, worsen attacks, and extend cycles, particularly when they are "overused."

I'm willing to bet her verap intake is lower than it should be.  People can need 960mg/day or more to treat CH; it's rare for docs to prescribe above 480.  Also, immediate release works better than extended release.

I'd consider starting Benadryl right now, 25mg four times a day (or what she can handle given the likely drowsiness).  Pollen and other allergies can bring on or exacerbate CH attacks.

You can read a lot more in this file, including the basics of "busting," which is what Dana' is referring to in the previous post.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Great people here.  They'll help you.  Thank you for being there for your wife!! (As a supporter, I know it's also partly for yourself, since we suffer in our own ways seeing loved ones go through this.)

 

 

 

 

Please read this file

Edited by CHfather

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In addition to the oxygen I will also down a 5hr energy drink to help slow down the ramp up time of the attack. ad CHfather said your oxygen needs to be at a much faster rate. you can get a regulator online that will allow you to set it at 25 lpm and once the attack starts to level off you can lower it as needed. the D3 regimni helps a lot of people and will take a few days to kick in but no harm in starting that and staying on it all year round. I also add Benadryl to the mix during season changes and I take 20mg of Melatonin before bed every night to help with the overnight attacks. 

Non of the things mentioned above have solved my issues and cured me but they all help a little. I was at one time getting kip 10 hits several times a day lasting up to 3 hours long. At this point I average kip 5 hits lasting about 15 to 30 minutes with occasional kip 8's. I also depended on the triptans taking several shots and pills a day and that also seemed to help with the amount of hits I get. I now save that for the real bad ones and only take them maybe once every other month when i really need it. 

I am in the NE part of the US and have been getting hit hard the last 2 weeks or so, I think it may have something to do with the weather in this part of the country but like it always does things will calm down and better days are ahead.  

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Hi,

Big hugs to both you and your wife. Sometimes, it is harder for the loved one than the clusterhead. It's tough to stand by, unable to help. 

The Beast likes to change things just when you get used to its schedule. Hang in there.

D3 is good, well worth trying. Also, worth reading the numbered posts in the Clusterbuster Files section to learn about busting options. But that'll mean coming off topiramate. My experience with Topiramate is that it made them worse, and has a scary list of side affects. I was on it a year, and it took me to the edge of suicide. I'm not a fan of it. Busting and D3 are (in my opinion and experience) the best methods for stopping the beast. 

Mox

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Regarding the numbered files that Moxie mentions, they're a little hard to find since they've become a little scattered now.  The key ones, along with some essential busting principles, are mentioned at the end of the file I linked you to on "Basic non-busting information," and they are also included in the banner notice at the top of each page that says "New Users -- Read Here First."  In fact, what's at the end of the "Basic non-busting information" is exactly the same as what's in the "New Users" document.

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