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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › How do I do this?

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How do I do this? (Read 2232 times)

harmed

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How do I do this?
Aug 24^th, 2014 at 12:11am

Hi everyone,

I was diagnosed with Cluster Headaches a couple of years back, and every year around the same time they've come back.

The first year was hard, trying to get a diagnosis, and it was really terrifying not knowing what was happening. I finally got in with a good neurologist and he sorted me out, for which I will be forever grateful.

The next year, they came back and I quickly got in with my GP and went back on Prednisone and Verapamil, but not without problems; an increased dose of Verapamil resulted in a huge drop in my blood pressure. Last cycle, I spent most of it on Prednisone as it was the only thing that was helping and that I could tolerate. That and the Oxygen.

Anyway, they've come back again this year, and I'mreally struggling with it. Usually I'm a really upbeat, positive person but I just feel defeated. Ive just come off Prednisone and suffering badly again... I've been operating off about 4 hours sleep a night, trying to study and work and I've had some personal stresses on top of this all, and it just all feels like too much at the moment.

If anyone has some coping mechanisms that they would like to share, or how they've comes to term with these headaches, I would love some insight.

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AussieBrian

CH.com Hall of Famer

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CH - It's all in your
head!

Posts: 3851
Cairns, Qld, Australia
Gender: male

Re: How do I do this?
Reply #1 - Aug 24^th, 2014 at 1:02am

harmed wrote on Aug 24^th, 2014 at 12:11am:

...If anyone has some coping mechanisms that they would like to share, or how they've comes to term with these headaches, I would love some insight.

My main coping method is living here at clusterheadaches.com with people who know what it's like on the inside so there's no guilt, no ego, and no need to explain.

Welcome home, harmed. You're among friends now.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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BobG

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Posts: 6422
St. George, UT
Gender: male

Re: How do I do this?
Reply #2 - Aug 24^th, 2014 at 4:25am

Welcome to the board, harmed. Go to the Medications, Treatments, Therapies section of this website and read 123 days PF and I Think I know why entry. Many sufferers are getting relief from the D3 treatment. Also, click the yellow button on the left side of your screen and learn about using oxygen. Tried Imitrex? Ice packs? Energy drinks?
Please keep us posted.

« Last Edit: Aug 24^th, 2014 at 4:28am by BobG »

Stay stressed. Never relax. Never sleep. Ever.

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: How do I do this?
Reply #3 - Aug 24^th, 2014 at 12:18pm

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.
==================================

If Pred is the only med you have been given to block attacks--you have doc who does not know his business.

Print the PDF file, below. These are the most comonly used meds for Cluster and you'l see Verapamil--most widely used med to prevent attacks.

Urge you to print this article and use it to discuss treatment with your doc. If it appears that this material is alien to him then time to seek headache specialisst. (Get back for guidance, if you wish.)
====
The standard protocol for Cluster is:
1. Pred for about 10 days to quickly abort attacks.
2. At the same time, starting a long acting preventive, such as Verapamil, which you use for the entire duration of your cycle.
3. A quick acting blocker to rapidly kill attacks which sneak by #2.

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

(96 KB | 16 )

Bob Johnson

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: How do I do this? Reply #4 - Aug 24^th, 2014 at 4:04pm Hi and welcome Brian, Bob and Bob have all given you good advice. It is the combination of an effective preventive plus abortives that I know work for me that keeps my CH under control. Add in the support from people here who know what we go through and it is a great combination.
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harmed

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Re: How do I do this?
Reply #5 - Aug 24^th, 2014 at 6:36pm

I have been using Verapamil as well, but have trouble tolerating it. I get to 360mg and my blood pressure drops dangerously low. Were thinking about Lithium or sodium valproate, but I'm a little hesitant. I know verapamil has the best track record as a preventative but its difficult to stay on when I feel like I'm about to pass out all the time.

Its difficult to get the Imitrex injections here, but I regularly use oxygen, energy drinks and ice/heat packs. I just wish things were straight forward, and I could get on with my life. I know its sounds terribly gloomy and depressing, but I'm having a difficult time coming to terms with it all at the moment. Things will get better, its just about making it through these tough times. It really makes you appreciate the good times in life...

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: How do I do this?
Reply #6 - Aug 24^th, 2014 at 7:49pm

That's the kind of information which helps us to help you.

The PDF article will give you alternatives to Verapamil. It's just important to get off a steady diet of Pred.

Information and patience is the survival plan for Cluster. The odds are very much in your favaor once thre correct mix of meds/treatment is established.

The blesssings of his site is that you are surrounded with lives which have been restored to good living. Just don't let your doc stand still!

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

------

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.
==========
And please enter your location.....

Bob Johnson

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feisty CH.com Veteran Offline Posts: 205 west coast, BC, Canada Gender:	Re: How do I do this? Reply #7 - Aug 25^th, 2014 at 2:53pm Sorry to read about what you are going through. My husband is now pain free and we think it's because of the Anti-inflammatory Regimen - see the link in my signature line. My husband had significant improvement in two weeks and is almost pain-free after 5 weeks, but some get results within days. Hang in there.
Back to top	« Last Edit: Aug 25^th, 2014 at 2:54pm by feisty » wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works! IP Logged

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