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Cluster Headache Help and Support >> Cluster Headache Specific >> Please Help Me!!! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1628771970 Message started by Pfunk on Aug 12th, 2021 at 8:39am |
Title: Please Help Me!!! Post by Pfunk on Aug 12th, 2021 at 8:39am
Hey. I'm 50 years old and have been here along time. Gotten help from tons of you through the years as I have been suffering from these headaches as long as i can remember. Doctors said I had allergies, migraines you name it! Not until i came on board here were we able to come up with the right diagnosis.
About 2.5 years ago I was diagnosed with sleep apnea and started using a CPAP. The attacks literally stopped the next day. But about a month ago The Beast came back, with a vengeance! Im now getting no relief whatsoever! as soon as i can abort one attack, another hits me 1-2 hours later, worse at night of course. I feel totally helpless. For the first time, Ive come to understand why they are called "Suicide Headaches"! It has completely taken over my life and the life of my family. i try to hide it from my kids but my wife is taking it hard, aas theres nothing she can do. Ive lost alot: job, car and any possibility of taking a new job. I'm at my wit's end here. O2 works but im playing hell getting it prescribed again. But even when i do use it, 1-2hours later... Trex works most of the time. I'm on the D3 regimen and even that doesnt seem to be helping as it has in the past. PLEASE HELP!!! Desperate!!! I'm really feeling like I'm at the end of my rope! :'( :'( :'( Pfunk |
Title: Re: Please Help Me!!! Post by AussieBrian on Aug 12th, 2021 at 9:58am
Have you considered it might be a headache syndrome different from CH?
There's other joyous diseases such as Paroxysmal Hemicrania which result in dreadful headaches every couple of hours and each one is remarkably similar to a CH hit, just much shorter lasting. Happily such conditions are quite easily managed so it might be worth thinking about as a light at the end of the tunnel. |
Title: Re: Please Help Me!!! Post by pattik on Aug 12th, 2021 at 11:18am
Pfunk
I'm so sorry you are going through this! The first thing that comes to my mind is to try adding Benadryl (Diphenhydramine HCL) in the evening before bed. My allergies can allow a new cycle to break through my D3 regimen. It can make you drowsy, so I take it near bedtime. As to the amount, I have read everything from a 12.5 mg child's dose to a 50 mg adult dose. When my worst allergy season is approaching, I take 50mg @bedtime. Histamine receptors are involved in the pain cycle. So if you can get ahead of it with Benedryl, it can help. Batch has advised on this many times, and it might be useful for you to PM him. Take care, Patti |
Title: Re: Please Help Me!!! Post by Pfunk on Aug 12th, 2021 at 1:54pm
Brian. TY I have been reading up a bit on other things as of late as a few things seem a bit different. like the fact that it comes back sometimes even 30 minutes after abort. itd be great if it was something easy rather than the beast.
Patti. Ty as well. i usually take Benadryl in the evenings for allergies anyway. But have not as much lately because i have again become afraid to sleep as usual with the beast Thanks Pfunk |
Title: Re: Please Help Me!!! Post by MDR on Aug 13th, 2021 at 6:54am
Pfunk,
Went through the same thing a few years ago 8 to 10 a day they will pass I tried everything nothing seemed to work it just takes time. Mark. |
Title: Re: Please Help Me!!! Post by Pfunk on Aug 14th, 2021 at 10:35pm
Not saying it’s solved but did go to the doc the very next day and mentioned the paroxysmal hemicrania as it did sound very much less ke what may be happening with me(TY Brian). He started me on n indomethacin twice a day. So far I think gotten hit only twice each day and each hit was far less painful full and able too be aborted for n 10-15 mins. Been doing this a long time so I know It coming or be Just a freak thing but thank God for small favors! I’ve been able to get some sleep, which h to haven’t in the last month. Ty all for responses and help! Love my CH family
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Title: Re: Please Help Me!!! Post by Pfunk on Aug 16th, 2021 at 10:47am
so to update. Things seem to be trending in the right direction since I started taking the indomethacin. it does appear the dosage may need to be higher as mt doc only prescribed 50 mgs. I was referred to a new neurologist and hoping to get some more answers there. That being said, I have only gotten hit twice a day since Friday and the severity and duration of each attack was considerably lower(pain=@6-7 and able to abort with O2 within about 10-15 mins.)
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Title: Re: Please Help Me!!! Post by Peter510 on Aug 16th, 2021 at 5:05pm
Pfunk,
One of the standard tests for diagnosing Cluster Headaches is to prescribe Indomethacin, and if it works, then it’s not Cluster Headache. I was told this by the leading Primary Headache Neurologist in Ireland, many years ago. Think back to Brian’s post mentioning Heracrania...and discuss this with your new Neurologist. Wishing you well, Peter. |
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