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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › New to me

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New to me (Read 679 times)

Demon

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halifax ,nova scotia,canada
Gender: male

New to me
Jan 26^th, 2015 at 3:33pm

Hi ,I am new to all of this, I was just told by my doctor recently that I have cluster headaches. I had no idea what they were,a sort of migraine I was told. Well ,I have never ,never been so scared in all my life ,I thought I was dying when they started, woke me up,i was in agony ,I thought I was having a stroke or a hemorrhage, my wife rushed me to the hospital,i don`t even remember it,the pain was so intense and crippling. the gave me a bunch of pills,had a ct scan,checked for memengitis,and I was then given sumitriptan,and nothing was helping,i passed out twice from the pain.the gave me a maxoran injection.nothing was working.2 hrs later it was over.er doc told me it was a bad migraine ,told me if it happens again to lie in a dark quiet room.yea good luck with that.i was dazed and confused and wiped. Little did I know that they would be back everyday,4 times a day, this was a few months ago,i have a constant headache 24 hours a day, it never leaves, and then the big ones come, scared to fall asleep sometimes.at least I can prepare for them when im awake. A doc that was replacing my gp told me they are clusters. Her husband suffers from them.so now I am on a host of meds to try and find a decent abortive that helps, and a daily preventative to try and fend them off. This site is helping. I feel bad for my family, they want to help, but if I cant figure it out, they won`t. Its hard to describe what your feeling when they start. if I could rum head long into a wall and knock myself out I would just to ease the pain.now I have to wait to see how long my "bouts" are.

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Bob Johnson

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free." -Epictetus

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

Re: New to me
Reply #1 - Jan 26^th, 2015 at 4:15pm

Welcome, I guess. Sorry that you have had to find us and glad that you did.

Second good news: you appear to have found a doc who has some experience with Cluster. Large % of docs lack good training/experience treating us but the good news is that the changes of getting good control is high.

First step is working with your doc to get immediate control over the attacks. The standard approach is:

A. a med which aborts attacks quickly (but must also be used with a med which works to prevent attacis.
B. the preventive med starts at the same time and then,
C. another type of abortive which you use when an attacks sneaks by the preventive.

Print out the PDF file, below and use to discuss treatment with the doc. IF she knows her stuff, none of this material will be strange to her.

This is such a rare disorder that the more you learn about it the better will be your control and, so importantly, your sense of control and diminished anxiety. So, expore as you have time.....
-----

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.
-------------------------www.clusterheadachefoundation.com
A new site (ca. 2015) with extensive material. Explore the site map and then patiently
the broad range of materials.
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Explore the buttons, left of this page.
============
IF you have any questions/doubts about your doc, get back and let's discuss it. One of the worst things for a new Cluster person is to have an unskilled doc. Too many folks wander around feeling hopeless because they have no experience to realize that it's the doc who is hopeless. <bg> (Why the PDF article is important. It's your chance to see if she recognizes/knows.)

So, you have a full plate for now. Get started and stay in touch

« Last Edit: Jan 26^th, 2015 at 4:22pm by Bob Johnson »

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Bob Johnson

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Demon CH.com Newbie Offline I Love CH.com! Posts: 2 halifax ,nova scotia,canada Gender:	Re: New to me Reply #2 - Jan 26^th, 2015 at 4:57pm Thanks bob,any and all info is helpful.still very confused about a lot of things.i`m sure I will have questions. thanks again
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maz

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Hampshire, England
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Re: New to me
Reply #3 - Jan 26^th, 2015 at 7:25pm

Hi and welcome
If you were given sumatriptan tablets they take too long to be absorbed into your system to be of much help. Sumatriptan auto injections are by far the best, and will abort a big one in a few minutes.

Alternatively, pure oxygen (this is important) delivered at a minimum of 15 litres per minute (more is better) with a non re-breather mask is also excellent. The flow rate and the correct mask are vital. I use the oxygen at home and save the injections for when I'm out.

Look around these boards for info on the vitamin D3 regime, by Batch. It's natural, healthy, and a lot of folks here have become completely pain free with it. If you send a PM to Batch he'll help you work it out.

Hope this helps a little
Maz.

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