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Kaaiohelo

Desperately Seeking Help

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My name is Kay and I am desperately needing help. I am advocating on my husbands behalf. He is 34 and experienced his first CH about 12 years ago and for seven years they were very infrequent but at the time they were diagnosed as migraines. His doctors discovered a pituitary tumor, four years ago, and assumed that was the source of his headaches. The tumor is under control now with cabergoline but maybe 6 months to a year after that he was finally diagnosed with CH. In that time they have increased in frequency and in the last year he was finally given sumatriptan nasal spray and found much relief from that and even with oxygen. Since January though things have progressively gotten worse. With 3-4 daily on average with some waking him in the middle of the night, he is miserable. Last month he was prescribed sumatriptan injections, but not enough to keep up with his frequency. He also has an oxygen tank here at home but it doesn't seem to help much anymore. The reason I am on here asking for help is because he is in the military so the one thing that could  truly help him he can't do without constant fear of losing everything he's worked so hard for. I would much rather him be unaware of what I'm trying to do so that I can be held accountable without it damaging his career in the military. How can I help him. It's affecting our family and our lives so much. He spends most of his time in pain while the kids and I sit around feeling so helpless because there really isn't anything we can do for him. I don't think he could ever bring himself to commit suicide but I hate seeing him like this. Someone in that much pain shouldn't have to suffer. I want my husband back. Someone please help. 

Thank you so much 

Kay 

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Welcome Kay,

We think so very much of our supporters!! They truly are hero's. It is a very tough job.

The Trex (sumatriptan) shots are the fastest working med that is prescribed.However, it does carry it's drawbacks. Usually patients are only prescribed 9 12 per month, which does not cover all the hits a CHer will have in a month. There is a way that they can be split into 2 or 3 doses and that is a big help. Now, bear in mind that trex is hard on the heart and can cause issues if over used. When they prescribe it, it appears that they are thinking migraine = 5-10 hits a month. As you know CH can be 5-10 hits a day!!

Oxygen is the number one abortive out there. It must be used with a non-rebreather mask with a flow rate of at least 15lpm. Many need 25lpm at times. The most important thing to know is that he must exhale fully and hard, then inhale deeply, hold for a few seconds and then repeat. AND stay on the O2 breathing at a normal rate for about 5 minutes after the pain is gone. This way he will get an hour or more of PF (pain free) time between hits. Just breathing in and out will not do the trick. He needs to get all the CO2 out of his system. Ergo, the deep forceful exhale. The bag on his mask should re-fill while he is holding and exhaling so there is no delay getting another breath. Some people prefer the breathing tube over a mask due to face pain. And never strap the mask on in case he falls asleep and all his O2 gets wasted.  There is mask available from our sister site for about 30.00 that is the best. The main reason that O2 fails for some patients is they do not receive proper instruction on how to use it. Initially he may be hyperventilating due to the pain, so just continue that until relief begins! Many, if not most of us have had to teach our Neuro's how O2 should be used!!

Is he on a preventative like Verapamil? That is the most commonly prescribed and successful preventative out there. Cher's normally require very high doses. Say about 900mg a day. It is started at lower doses and increased over time. Blood Pressure needs to be monitored, as Verap will lower it.

Often a 'bridging' med like Prednisone is given for about a week to help calm the CH while the Verap is building up. Pred is not to be taken long term. It can destroy his hips and even shoulders. So, minimal use to get something else working. It works so fast at the beginning It seems to be an angel. But that angel can really hurt him in the long run.

If you look at the top of the main page, you will see about 6 listings for the forum. General, Share Your Busting Stories, Theory and Implementation, etc. The one that you want is the Clusterbuster Files. Start reading there. It has a great file on O2 use. Read it. Get him to read a printout too if possible. It also covers a lot of other stuff.

Also in that file you will find a topic called the D3 Regimen. Just regular vitamins you can buy anywhere. It is for inflammation and has proven to be a big help for many of us. Lowers the intensity of the hits and slows the ramp -up time to give him a bigger window to hit the other stuff. Some have gotten PF just from that routine!! I strongly suggest that he try it for at least a month!

Busting is a procedure he may want to try at a later date. The materials used are not tested for with a standard 'drug' test. And they clear out of your system in hours. They are generally looking for opioids and pot, not LSA seeds or Magic Mushrooms. Both will clear out of his system in a matter of no more than three days.

There are ways to mitigate a hit or prevent it with common Energy drinks or Energy Shots. Even coffee is a huge help. Slam it down at the first sign of a hit. Most people like it really cold and use the shots because they are small and easy to transport. I use strong coffee kept in the fridge in the summer months. He should grab one on his way to the O2. He can take Melatonin (9-25mg) at night. That helps many. I take caffeine pills every day at 5pm for night time hits. Got sick of coffee and Energy Shots make me sick. :blink: Most of us find that the caffeine does not keep us up at night either. Weird, but true. Some people put an ice cube on the soft palate of the CH side and hold it there for relief.

This is just a start. More info will provided by members as they read your thread.

Thanks for being a great supporter!!!

 

ATB

spiny

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Nice to wake up on a Saturday morning and see that the amazing spiny has already done what needed doing. 

This is the file about splitting Imitrex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

This the mask she referred to: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

This is an alternative approach to using oxygen, not requiring a higher-flow regulator or the special mask, that has worked well for many: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

With more effective oxygen, the D3 regimen, and the other strategies spiny mentioned (energy shot, melatonin), things should get a lot better.

FWIW, the agents used for busting don't show up on any standard drug-testing panels.  In the file about LSA, you'll see that the seeds are legal to purchase and legal to possess.  He could also try kudzu root, which is 100% legal and has been shown to be quite effective.

 

 

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HI Kay, your husband can beat this or he can find much needed relief. Tell him that there are people just like me who "feel his pain" and who are praying for him. Hopefully your husband has access to good doctors where you are. The moderators who have chimed in are wonderful, smart, caring people who have great experience and knowledge to share.

Winter never fails to turn to spring. There will be relief and happiness. Hang in there.

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Aloha Kay,

You Kama'aina or Kanaka?  I know what you, the kids and your husband are going through and the good news is it doesn't need to be that way.  Your husband is very likely vitamin D3 deficient and that deficiency is contributing to his CH.  My name is Pete Batcheller a.k.a., "Batch" here at Clusterbusters.  I'm a 71 year old retired Navy fighter pilot, a long time CHer and I don't put out bum gouge... Even though I still have CH, I no longer suffer from the terribly painful and debilitating CH attacks. 

Download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link.  Be sure to have your husband share a copy with his civilian PCP or neurologist.  Military doctors may decide CH is grounds for a medical discharge... and none of us want that.  That way you'll all be singing from the same sheet music.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

You can also also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone.  The QR Scanner app is free.  It takes less than 10 seconds to download and install.

anti-inflammatory_Regimen_qr_code_Small.jpg

I'm also sending you a PM with additional information that will help prevent your husband's CH if the two of you follow the suggestions... If you do, the odds are in your favor you'll get back the guy you married... without CH...

Take care and check you PM inbox.

V/R, Batch

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Kaaiohelo,

++++ Everyone's post above. :)  

I left the military in 93' and was never properly diagnosed while in service.  To be honest, I don't know how I held it together while I was in service with my CH.  My attacks weren't as frequent or painful, but got worse over the years.  I would be a strong advocate for seeking medical discharge due to his CH.  I hid my attacks because I was on flight status.  I didn't know what caused them, but knew I'd be grounded if the flight surgeon figured out they were as debilitating as they were.  That BAD decision on my part seriously hurt me for the rest of my life....  I didn't have my condition properly documented, nor did I allow it to be part of my discharge reason.  For some reason vets have a significantly higher incidence of CH.  I'd suspect it's something that we're exposed to in service that triggers it.  I've read of others having anywhere from 80% to 100% disability through the VA for service connected CH.  That's a LOT better than any retirement he could get by staying in.  (IMHO).

Accolades to you for being a good supporter! :)

PFW,

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Hi Kay, just checking in on your husband? If he getting any relief? Have you looked into Verapamil? 

I'm thinking about him every day sending him prayers. 

Take care and please tell him that he can and will beat this!

Aloha,

 

Jimmy-

 

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