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New Here, I thought it was sinus problems! (Read 2454 times)
BrettK
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Anchorage, Alaska
New Here, I thought it was sinus problems!
Jun 10th, 2008 at 11:30am
 
Hi, I'm Brett.  45, M, about 7 years episodic.  The HA started after (I'm not sure how long) I had surgery, in 2000, to correct a deviated septum in my nose.  The ENT said it would decrease my snoring (and it did).  But some time after that I started with (what I now know were) CH's.  Convinced I had recurring sinus infections, I went to my family doctor who would give me a shot of some kind of steriod and a script for an antibiotic.  The first time it worked so that just reinforced my belief of sinus problems.  (I now know the steroid shot probably just broke a cycle by coincidence.)

As new cycles began, I tried the same thing (steroid shot/Antibiotics).  It would work for maybe a week but the HAs would return.  I finally, in 2005, went back to my ENT who did a CT scan of my sinuses.  Long story short: He operated to correct a minor abnormality.  Guess what.  It had absolutely zero effect on the HAs.

Later that year I saw a news story about "Suicide Headaches".  And while I wasn't about to commit suicide, I recognized the similarities to my headaches and started researching.  And sure enough, I've got CHs.  I told my family doctor who at least entertained my diagnosis.  He prescribed Maxalt as an abortive.  Knowing about headaches, I think he thought I was having migraines but I knew the triptan would be good for CHs as well.

And it was!!  In fact, for those of you doing the trex injections, you might want to try the Maxalt.  It comes in a fast desolving mint that melts in your mouth and is absorbed thru your mouth membranes.  I get relief from the worst HAs in about 5 minutes.  I don't ever remember it not working.

Since then I've talked my doctor into veripamil (Covera HS) since my blood pressure was a little high and that has at least helped reduce the severity of the HAs.  I've tried going off the veripamil twice with devasting effects.  I won't do that again for a while!!

I know I'm getting long winded but one other thing has helped - Soma.  This is a muscle relaxant.  I noticed a pattern to my HAs.  Pain would start right above my eye by the bridge of my nose, get worse, and then pain would start in my neck and shoulders.  It would get worse and seem to connect across my head to a KIP level around 9.  My wife (who seems to have every affliction EXCEPT CH) had soma so I thought maybe I could break this connection with my neck muscles.  It worked!  Then it worked again! and again!  It mostly works to this day except I have to take two somas sometimes.  I think I'm building a resistance to the soma.  Told the doctor and now have my own script for soma.

Running out of space now but I'd like to Thank everyone here.  I'm going to check out O2 and see how that works.  I hate all the pills!!  I'm also trying other things like quitting smoking, (last time I quit I was PF for 3 months), losing weight and low carbs.  I should see lower BP and Insulin levels from this diet.  I'll let u know how it goes.

Thanks Again,

Brett
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Bob Johnson
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Kennett Square, PA (USA)
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Re: New Here, I thought it was sinus problems!
Reply #1 - Jun 10th, 2008 at 11:38am
 
While your doc sounds willing he is not coming across as experienced. Two options: educate him or work with a person who is experienced in complex headache issues. (Get back if you want to consider a specialist.)

This is a good way to discuss options and to educate your present doc:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Bob Johnson
 
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BrettK
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Anchorage, Alaska
Re: New Here, I thought it was sinus problems!
Reply #2 - Jun 10th, 2008 at 11:55am
 
Thanks Bob, my Doc is pretty open minded.  I think he'll appreciate the info.  I'll first try to educate him.  As far as a specialist, I'm kinda SOL.  I live in Anchorage, AK and the few neurologists here are well known to be here because they couldn't make it anywhere else.  Besides, the more I read here, the more I believe this site is probably the single best source of Info on CHs.

I'm an engineer and I (maybe arrogantly) believe I can fix anything.  I've kinda been using myself as a guinea pig experimenting.  Looking for things that affect the CHs.  For instance, one thing I've noticed, 95% of the time, after a night of drinking to excess, I'm CH free for 2 to 3 days after.  (I might have a hangover HA the next day but after CHs, they almost feel good)  I wonder if anyone else has noticed this.  I've read that alcohol is a common trigger so this experience of mine is confusing but interesting.

Anyway, (geez I'm long winded today) Thanks again for the literature.  I'll be seeing my doc soon and bringing the info with me.

Brett
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tuck
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Gillespie , Illinois
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Re: New Here, I thought it was sinus problems!
Reply #3 - Jun 10th, 2008 at 2:36pm
 
good luck friend, you have found the right place!!!!!!!! EVERYONE here is eager to help, and the knowledge here is EVERYWHERE!!!! i hate to hear you have CH, but happy you found this site!      tuck
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cancer shmancer,, i get cluster headaches!
 
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BarbaraD
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Re: New Here, I thought it was sinus problems!
Reply #4 - Jun 11th, 2008 at 8:14am
 
Oh Lordy... an engineer.... was married to one of those for 45 years... sold my encylopedias a year after we got married! Wink (just kidding Brett).

Get some O2 (15 liters per minute with a non-rebreather mask) - that works for about 70% of us to abort the CH in a few minutes if taken at the onset. Save the Maxalt for when you really need it.

Alcohol is a trigger for a LOT of us - not ALL. I can drink most of the time (I'm chronic), but NOT red wine. For years beer triggered CH, but now I can drink a beer occasionally - go figure that one.

One thing most of us have found out over the years.... nothing about CH makes a lot of sense. What works this cycle may not make a dent your next cycle. It's trial and error. If you have a doc who will work with you - you're among the lucky ones. I did and do so I count myself in that few.

Stick around this board. There's 100s of years of experience with CH on here. We're a happy family of Clusterheads. When you get confident go to the General Board - we argue and complain just like we're all cousins. But we do have lots of support to offer.

Hope this is a short cycle for you.

Hugs BD
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What don't kill ya, Makes ya stronger!
 
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BrettK
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Anchorage, Alaska
Correction on the Maxalt
Reply #5 - Jun 11th, 2008 at 2:25pm
 
I was wrong about the Maxalt being absorbed in the mouth.  I was corrected yesterday and verified that it is not absorbed by the membranes in the mouth.  But, for some reason, it still works pretty fast and reliably for me.  It might be because I let it dissolve in my mouth and then drink some water.  That would rush it down to the gut faster.

Anyway, I just wanted to correct my statement.

Brett
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