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andy63thisyear

Age? Altitude? Verapamil? Zomig? Exercise?

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I was diagnosed with CH this month. I kept thinking I had sinus problems because of the stuffy nose and pain behind my eye. Looking back over the years, I now realize that I may have been experiencing CH for years, but now, at age 62 it is much worse! They started when I got home from hiking to the top of Mt Kilimanjaro (19300 ft).

My neurologist has prescribed low dose of Verapamil and Zomig nasal spray (which I can't take until my MRI has been read). She said getting Oxygen in nearly impossible.

As the rest of you, I have found that over-the-counter pain meds have NO impact at all, so I quit taking them. 

The only thing I have found that stops the CH is 16 minutes running on the treadmill. Even when I wake up at 1:00 am, it works immediately (forget about sleep for awhile).

Has anyone else had experience with CH past the age of 60? triggered by high altitude? Relief via vigorous exercise for 15 minutes?

What about Verapamil? Zomig?

 

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Welcome Andy...sorry ya had to find us...….

I was diagnosed with CH this month. I kept thinking I had sinus problems because of the stuffy nose and pain behind my eye. Looking back over the years, I now realize that I may have been experiencing CH for years, but now, at age 62 it is much worse! They started when I got home from hiking to the top of Mt Kilimanjaro (19300 ft).

DANG....for most of us the fervent wish/dream/fantasy(?) is to age OUT of CH...it's rare to age in.....tho I think you are probably right that you've been a clusterhead for a while now. Your activity level or some other action may have been protective. Elevation change and/or barometric pressure changes are well known/common triggers...

My neurologist has prescribed low dose of Verapamil and Zomig nasal spray (which I can't take until my MRI has been read). She said getting Oxygen in nearly impossible.

Low dose (which is?) verapamil is generally worthless...the sweet spot reported as 480 mg/dy immediate release in divided doses....some go much higher (I was over 1000/dy in high cycle). Can have cardiac effects which MUST be monitored... and may negatively effect your mountain climbing. Was quite effective for me til I dialed in the O2 use and possibly helped by D3 regimen....

That is a REALLY dumb thing for your doc to say about O2... as it is medically accepted as THE best first line abortive. Relatively inexpensive, easy to use, NO side effects like verapamil, portable (E tanks). Find yourself a headache specialist...many (most?) neuros are clueless when it comes to CH. I had an eminent brain surgeon ask me about using Inderal for Ch....said "yeah doc, 30 yrs ago and it didn't work then"...……...

Zomig NS (5 mg) is my abort of last resort...expensive but 99% effective w/o (for me) the nasty side effects of Sumatriptan....

An energy drink or REALLY strong coffee at first sign of a hit is effective for many....helped O2 work better/faster for me...

The only thing I have found that stops the CH is 16 minutes running on the treadmill. Even when I wake up at 1:00 am, it works immediately (forget about sleep for awhile).

Vigorous activity is definitely an effective strategy for many clusterheads....but it does become a convenience issue....some really unlucky folks get triggered by exercise...

Get yourself some OXYGEN...even if you have to get it from the welding supply...start the D3 regimen (good for ya even w/o CH....)

Best

Jon

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What worked for me was completely cutting out caffeine coupled with a super low histamine diet. Be patient! It takes a few weeks then hopefully like myself and many others your golden. Don’t cheat ! Has to be zero caffeine and super low histamine foods. Good luck!

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2 hours ago, andy63thisyear said:

Relief via vigorous exercise for 15 minutes?

Hey Andy,

You're not alone here. I experience relief when I go running, but if I don't run long enough, it will continue build... 30 minutes is generally my sweet spot.

If you have an oxygen tank, you can inhale enough oxygen to abort the attack within minutes and you won't even have to turn on the treadmill.

Pain Free Wishes!

Edited by dmlonghorn
verbiage

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Hey Andy! Glad that you found us.

Falling barometric pressure is a main trigger for me. And, I live on a little mountain! So, going down the mountain after the Fall Equinox is problematic. Going down is fine - coming back home can be a bear. I attribute it to less pressure out = more pressure in. Very stupid simple idea. but how I look at it. It can work differently for others from my reading. 

Your doctor is correct about O2 being difficult to get through insurance. But, there are ways to push for it. I suspect that someone will post the piece on how to go about it here soon. I am very glad that she is pushing for the scan first! Rule out other conditions first. If you come up blank there, you can set up a welding rig and bypass insurance. Set up costs a bit, but the monthly outlay is cheaper than Medical. So, if you have to foot the bill, that is an option too look into.  

You should look at the D3 Regimen. It is well documented and has worked wonders for a large percentage of CHers'. It consists of a list of vitamins you take daily with the aim being to raise your D3 levels and reduce inflammation. It has helped many go pain free and others with a reduction in severity of hits and a slower come up so you can treat it faster and more effectively. Or get home before you can't! I would suggest getting your D3 level checked out as well as the scan.Many of us have low D3 levels in our blood and returning that to an acceptable range has been pretty magical for  lot of us. Batch is the member who has done all the work, with the involvement of physicians along the way. Minimal cost and no insurance in the middle. 

Aging out has long been a statement among doctors. I believe that the oldest known Clusterhead is around 90+. We have several members who are in their 70's and still have active CH. 

I had a great remission that lasted ten years. I started visiting the mountains and surprise - the beast is back! I cope by taking some caffeine at the start of the return trip. If there is no falling pressure due to weather, I can get through fine with that for most trips. A two lane mountain road is no place to have a hit.     

ATB and keep asking questions! :)

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andy', you've received great advice from several of the best advisors here, and I see from other posts that you're following up on it.  DO NOT be deterred from getting O2.  Your doctor has started you on the right path, except for surrendering much too easily regarding oxygen.

I tried to put the various things I know into one document, and you might look through it for other info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   That post also includes the info that is in the "New Users...Read Here First" link at the top of every page.  You might or might not be ready to consider busting now, but it will be good for you to know about it.

 

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Welcome to the community Andy....sorry you had the need to join us though!

Looks like just about anything I'd have to say has been addressed by others.....as far as age goes.....I'm one of the 70 somethings here and my last cluster activity was early Spring of last year shortly before my 71st birthday.....a doc once told me I'd outgrow them in my late 50's so I'm now wondering what part of my late 50's he was referring to!

I will reiterate others O2 comments though, screw the docs and the oxygen suppliers if you can't get satisfaction......as Spiny stated, many of us have used welding oxygen longterm with no ill effects....costs between 3 and 4 hundred bucks to get set up with a large tank, reg, and the Clustero2kit mask then 20 to 25 bucks for refills/exchanges.......O2 is a clusterheads best friend!!

Dallas Denny 

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