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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › A newbie here and a newbie to Clusters

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A newbie here and a newbie to Clusters (Read 1092 times)

USMCWIFE

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A newbie here and a newbie to Clusters
Mar 15^th, 2011 at 7:53pm

So for the past few weeks I've been getting "bad" headaches. Went to see a neurologist. He said migraines. Put me on Imitrex. First night I took it I wound up in the ER non responsive and with a 4 day stay on IV pain meds. Thankfully my roomate was a screamer too so we kept each other entertained.
Came home with an armful of drugs and no answers. Now everyday I'm having these headaches and popping pills. supposed to go in on Thurs for an injection in my neck for the "migraines" so I wound up looking around the web. And THANK GOD I DID!!!! Screw migraines...this is NOT migraines!!!
I'm sitting here at the computer crying to know that there ARE answers!!! (Not exactly the ones I want to hear) but answers none the less. I'm so thankful. BEYOND thankful!
I'm going in on Thursday with a list full of questions and a list of symptoms. I think I'm screwed because the ER Doc was pretty adamant about no more "triptan" meds. I already take Lamictal and wellbutrin for bipolar. I just need a new brain. *sigh*
Can I just hug each of you?? ...I'm not going crazy(ier) Cheesy

!!!!! I'm so THANKFUL to find ya'll!!!! SO THANKFUL!!!

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bejeeber

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Re: A newbie here and a newbie to Clusters
Reply #1 - Mar 15^th, 2011 at 8:45pm

Well that hospital stay and what precluded it sounds like a helluva nightmare alright - sorry to hear you had to endure that. Sad

You may have already noticed on here that an actual headache specialist is about the only doc you can usually trust for an accurate diagnosis. Here's hoping you can get a good diagnosis real soon and start quashing these attacks!

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Batty

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I thought it was CH...but
my helmet is too tight!

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E'Port Cheshire UK
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Re: A newbie here and a newbie to Clusters
Reply #2 - Mar 16^th, 2011 at 6:33am

Hi USMCWIFE!

So glad you made it to us on here! We are all a bit crazy!
Your post says you are missing the vital link in your treatment for CH if that is what you have...have you done the Cluster Quiz and read up on the 'traits'?
I am not experienced enough to advise you what meds are good or bad....
BJ said that you really need to see someone who is clued up on CH!
You may have a bit of a fight to find one but, as you are part of the Marine Corps,
I don't think you will take a 'no' in this case! Wink

The section about oxygen info on the left pane is what you need to read up on, and take this info to your Doc when you go....

The Vets here, will be along soon to ask you the right questions about your meds and give you all the info you need!

Really glad you are here!

Respect

Gary

"An old Wolf may lose his teeth, but never his nature.."

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Guiseppi

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San Diego to Florida 05-16-2011

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SAN DIEGO, CALIFORNIA USA
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Re: A newbie here and a newbie to Clusters
Reply #3 - Mar 16^th, 2011 at 10:49am

Welcome to the board. Bejeeber and Batty make excellent points. You need to locate a "headache specialist neurologist." General practitioners get about 4 hours TOTAL training on all headache types. Your garden variety neuro gets a little more, but not much. You're a woman, so headache=migrain. It's the easiest diagnosis for them. So your first step is to get to a specialist.

If it turns out it is CH, oxygen will be your new bestest friend! I'm a 31 year sufferer, oxygen has almost completely eliminated my use of imitrex.

And something to keep in mind. Lithium, a med commonly used to treat bi polar, is also a very effective prevent med for many CH'ers. I take it at 1200 mg a day when I'm on cycle, blocks 60-70% of my attacks.

Get thee to a Headache Specialist Neurologist. If it is CH, it's a lifetime affliction, the sooner you get squared away on an effective treatment regimen, the better.

joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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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: A newbie here and a newbie to Clusters
Reply #4 - Mar 16^th, 2011 at 11:27am

God loves a Marine... Their wives too!

Welcome aboard. Where do you live? East Coast, West Coast, or way out West? I know were all the MEFs are stationed and a few other locations as well...

Knowing where you live may help us point you in the right direction to find a headache specialist familiar with treating CH'ers... that's assuming you have a diagnosis for cluster headaches.

If you do, you need to ask for oxygen therapy at 25 liters/minute with a non-rebreathing mask. Most military doc's will be unfamiliar with cluster headaches and the traditional prescription for oxygen therapy at the lower flow rates, but they are familiar with oygen so push for 25 liters/minute and don't settle for anything less than 15 liters/minute. If Marine Corps pilots flying the F/A-18 or AV-8B Harrier can suck down oxygen for a couple hours at a time at flow rates over 30 liters/minute, why should a USMC Wife be any different?

Not having imitrex may be a blessing. Many of us have found that oxygen therapy if used properly, early, and at high enough flow rates is just as fast as imitrex injections, but without the side effects so that is all we use...

You also may want to print out the following link and take it along to your next appointment about your headaches. This is the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.

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

It lists the treatment recommendations for Cluster Headache in order for acute and preventative treatments. You really can't go wrong starting with meds at the top of each list.

The task force of neurologists that developed these guidelines number among the brightest minds in the world at treating patients with cluster headaches. They see more CH'ers in a week than most neurologists see in an entire career in neurology.

Take care and Semper Fi,

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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wimsey1

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MA
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Re: A newbie here and a newbie to Clusters
Reply #5 - Mar 17^th, 2011 at 7:45am

We absolutely know the feelings of relief you are experiencing. I felt and did the same as you when I found this site. And on top of knowing I wasn't the only one...there is actually good advice here on how to deal with this beast. And you've been given good starting points above. Trust those guys...they know what they're talking about. Pay the most attention to the lithium/O2 threads, and read as many posts as sound applicaple to you as possible. Go into your next appointment armed with a list of what you want to try. We have found that even doctors who know the least about CHs can be sympathetic to the pain and are willing to try stuff we think might help, especially if we bring in some research. Good luck, and God bless. lance

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