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new here (Read 1722 times)
firefly
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Maryland
Gender: female
new here
Jun 6th, 2012 at 11:05pm
 
Hello,
My husband began having headaches five years ago, with a three year "break". We thought he was one of the lucky ones and we had managed to escape the onslaught of CH. We were wrong. 2 weeks ago they returned to begin torturing him again. Sad He recently switched doctors and is now with a neurologist who specializes in CH. 3 years ago my husband was on everything from lithium to depakote. We had more meds than a pharmacy. Nothing worked. O2 helped but insurance complained. he went on disability for the duration of the headaches. I watched as he screamed and begged to die with every single headache.
This time around the headaches are not as frequent, he is not on the cocktail of meds like before. He is only taking prednisone, and of all things dayquil. he has pain that breaks through the prednisone every 3-4 days. he has discovers he can not use any products with alcohol as these will cause a headache to be triggerd. I have ordered the o2 but it is going to be a week before it can be delivered. I cringe every time 7-8 p.m. rolls around because I know he is going to suffer with pain. even though it happens every 3-4 days, it is still hard. our lives change so much during his headache season. The worse part for us both is that he works night shift so during week if he gets one he is at work. he hides in his office away from everyone until it passes. But when he is there I worry more. Trying to keeps my worrys and fears calm so as not to upset him. alot of people don't understand. they say "oh its just a headache. take some aspirin." I feel like screaming at them. they have no idea. any suggestions how to better support him? is there truth to the vitamin theory? what about turine?  looking for suggestions to latest ways to abort or subside, forgive my spelling errors as my thoughts go faster than my fingers at times....
thank you.....
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Akina
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Posts: 54
BFE, NC
Gender: female
Re: new here
Reply #1 - Jun 7th, 2012 at 4:36am
 
Let me be the first to congratulate you on being proactive.  Don't worry about us "not understanding", we have all "been there, done that, tried this or that, and really hate the ugly t-shirt it gives us."  Everyone else doesn't understand what us supporters see on a daily basis.  As long as you are there, gaining knowledge for him, and just letting him know that you are willing to work through anything...that is the best thing ANY of us can do.

As for your questions: Look for the Oxygen tab on the left side of the page.  It is the go-to abortive for CH's.  It doesn't work in 100% of the cases, but at least try it out again, following what the tab says. But basically it will work when used at flow rates of at LEAST 15 lpm and with the use of a non-rebreather mask.  The other masks available seem to have no effect on aborting a CH hit.

As for the vitamin regime, it has proved to be another one of those go-to long term tries at becoming PF.  I believe it is right up there on the number of CH sufferers who find relief from it.  Again, with any medication, it may not work for some like it has for others.  I will echo something Batch says about it, your husband needs to go get his 25 (OH)D blood serum levels checked. We are finding out that a majority of CH sufferers are severely deficient in this key vitamin.  There is a thread started in the Medication area entitled "123 Days PF and I think I know why" that lays out exactly what is needed. The blood test will give him and you a rough idea on how long it will take to become PF.  Average response times vary, but could be anywhere from a few days to a week or two.  Added bonus is that all the vitamins  are over the counter and cheap (well, in comparison to some of the medications.  Additionally, if it does not allow him to go PF, it will greatly increase his overall well being.

As for the taurine, again, it's another "at home" remedy that has seen several hits aborted when taken right at the onset of a hit.  Red Bull energy drinks, or some other brand that has about the same levels of taurine can abort the low level hits. 

And don't worry, really...this is a place for us Supporters to vent our frustrations, our fears, our worries to other people who understand EXACTLY what you are going through.  Keep us updated and let us know what is going on.
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Beth E
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Thanks for understanding
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Posts: 88
Union City (Erie)  PA
Gender: female
Re: new here
Reply #2 - Jun 13th, 2012 at 12:38pm
 
I cringe and cry everytime a new person comes on here.  It means another person is suffering.  Another two people actually.  I understand how much you hurt to see him hurt!!!  But you are in the right place! You are not alone and neither is he. Most meds are definitely long term and must be taken regularly in order for them to work correctly.  And what works for some, may not work for others. (As we have learned on here)  Keep your head up and open.
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