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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hi all, I'm a new member here

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Hi all, I'm a new member here (Read 1658 times)

evanm

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Hi all, I'm a new member here
Nov 7^th, 2014 at 5:53pm

I've experienced clusters for close to 20 years, but thought they were sinus headaches. About three years ago, I went to the ER and for the first time ever a doctor suggested it was cluster headaches. I knew just enough about cluster headaches to think "dear God, not that..."

Well, fast forward to this week: I met with a neurologist for the first, and hopefully only time. She confirmed the diagnosis. Fortunately, I've had that extended period of time to come to terms, and I actually feel a sense of relief. I've lived with the pain for a very long time, regardless of any diagnosis. The only difference is, that if the diagnosis is correct, then there's a chance the treatments will work.

My clusters are episodic, and occur anywhere from every 3 months to every 2 years. Clusters last a month or two. The pain is rarely right behind the eye and is usually centered around the sinus cavity just below the eye and around the bridge of the nose. Other than that they are typical of cluster headaches: eg happen at the same time of night, pain is severe to extreme, typically last for an hour or two.

The most recent cluster was bad, and lasted close to two months. In that time I ended up in the ER three times. By the time I got in to see the neuro, the cluster had just passed, so it will (hopefully) be some time before I start on the regimen she prescribed: varapamil, O2 and imitrex injections.

Anyway, it's nice to know there's a forum for folks going through the same thing as me, and I'm glad I found this site.

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Don B

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Meriden, Ct.
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Re: Hi all, I'm a new member here
Reply #1 - Nov 7^th, 2014 at 6:25pm

Hey evanm,
sorry you had to find us because of CH, but glad you did. I found relief knowing that I wasn't alone. I too have suffered from episodic CH for over 20 years. The first few times I was hit with them they were excruciating and precise in the time of day and duration of attack. Back then they only lasted a couple of months but this time I am into the 3rd month. I found great relief in this site for 2 reasons: knowing that I wasn't alone gave me a sense of relief and have also experienced physical relief. By finding out how to utilize oxygen properly (at least 15 LPM, with a non-rebreather mask) I have been able to abort nearly all attacks within a 10 minutes or so. I owe that to the info. found on this site. In the past I tried oxygen with little to no help, to find I wasn't using it right. So, I suffered the extreme pain until the cycle passed. this time they hit hard and initially at the same time at night. My wife found this site for me and got me the mask and flow rate needed to effectively use oxygen. I also made an appt. with a neuro. who prescribed prednisone which was effective for a few days. I began to take verapimil, that didnt do much to prevent and there were side effects. I continued to use oxygen to abort and decided to try the D3 regimen also found on this site with excellent efficacies being reported. within 3 days I felt relief and was dealing with shadows only. over the next couple of weeks I continued to improve. I have an appt. to measure my 25(OH)D level as I was defficient prior to starting this regimen. I have been pain free for 2 days now. I feel like a million dollars for the first time in years !! While it's only been a couple of days, I am confident that the D3 regimen is proving to be an excellent preventive. you can learn more about it on the site as many are realizing great results. Many thanks to "Batch" the D3 guru. Hopefully your neuro. works with you. there is a lot of info. on this site and many of us on this site that understand what you are dealing with. welcome, let us know how things are going for you.

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BobG

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Re: Hi all, I'm a new member here
Reply #2 - Nov 7^th, 2014 at 6:41pm

Hi evanm. Glad you found the site. There is lots of great folks with great knowledge of clusters. Now is a good time to look into getting your O2 tank, regulator and non-rebreather mask before your next cluster. You don't need to buy it now just collect the info about when, where & how. It will be a lot easier now that you are out of a cluster than when you are suffering. A 1 or 2 hour attack is a very long time to suffer. With the proper O2 set up you can reduce that time to just a few minutes.
Also a shot of energy drink, Monster, Rock Star, 5 Hour Energy will stop, or at least greatly reduce, a cluster attack if taken at the first feeling of attack.
Keep coming back to this site. You have a bunch of reading to do.

Stay stressed. Never relax. Never sleep. Ever.

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: Hi all, I'm a new member here
Reply #3 - Nov 7^th, 2014 at 8:25pm

Hey Evan,

Welcome to CH.com. You've come to the right place. We know what you've been going through and the good news is it doesn't need to be that way.

You're likely vitamin D3 deficient/insufficient. Your episodic cycles of CH are likely related to a drops in vitamin D3.

See your PCP for the lab test of your serum 25(OH)D. That's the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL... CH'ers, episodic or chronic, need to keep their 25(OH)D up around 80 ng/ml to stay pain free.

I don't blame you for not wanting to start verapamil... That said, you might want to consider starting the anti-inflammatory regimen of vitamins and minerals with at least 10,000 IU/day vitamin D3 on a year round basis.

At 30 to 45 cents a day this daily regimen is a surprisingly effective, very healthy and very safe alternative to the standards of care preventatives typically prescribed for CH.

Better than 80% of CH'ers who start this regimen experience a significant reduction in the frequency, severity and duration of their CH. 60% experience a lasting pain free response as long as they stay on this regimen.

You can read all about this regimen at the following links:

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

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

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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maz

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Hampshire, England
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Re: Hi all, I'm a new member here
Reply #4 - Nov 8^th, 2014 at 4:49am

Hi Evan
The three items your neuro has prescribed are the best things you could have. You are very lucky to have found a doc who knows what to do for CH.

Verapamil is a great preventative, so don't wait to get started on it. It takes a couple of weeks to become effective so pointless to wait till you're in pain.
Imitrex injections will abort the worst CH in a few minutes if any break through,but you can only have 2 per day and depending on where you live they are expensive. Stockpile a few when you are not in a cycle to be prepared and help spread the cost.
Oxygen will also work in a few minutes but only if it's used correctly. You must have a flow rate of at least 15 litres per minute and a non re-breather mask. The correct flow and mask are absolutely vital for success.
Finally, follow Batch's advice in vit D3 and your next bout may be a non event.

Keep coming back here for support and friendship, and let us know how you get along.
Maz.

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Bob Johnson

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free." -Epictetus

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Kennett Square, PA (USA)
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Re: Hi all, I'm a new member here
Reply #5 - Nov 8^th, 2014 at 12:53pm

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
==================================
Print the PDF file, below. Nice tool to guide discussions with your doc
====

These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

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

Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
a careful read.

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

(96 KB | 16 )

Bob Johnson

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