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I always thought i was the only one... (Read 1102 times)

alyne518

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Oklahoma
Gender: female

I always thought i was the only one...
Apr 14^th, 2010 at 11:54pm

Hello Everyone,
I am very happy to have found ch.com. It's a relief to finally know what is going on with me and best of all that I'm not the only one that this happens to. I am 21 and have had these headaches for as long as i can remember. When i was little i had chronic ear infections so everyone (Dr's) thought they were caused by that...I told my parents i had a brain tumor. As i got older and they would happen so sporadically i would think i had a bad tooth or i was grinding my teeth at night or something because of all the pain coming from my jaw. I even went so far as to beg my dentist to pull a molar out because i was so sure that it was do to it. I think my exact words were " dude!...its feels like its growing through my freaking brain....just take the thing out!!"....of course he didn't...So for the longest time i had come to figure that there was nothing anyone could do and whoever will figure out whats wrong with me when I'm dead....But 4 nights ago they started again ...its been about 8 months since my last attack. They usually last about 2-3 weeks and for some reason this attack is much much worse. Before I would kinda have a routine. But now it gets uncontrollable. I literally go insane... i mean there's hitting and shaking and crying and pure craziness and i do it all without waking anyone up. So last night i went on webmd and put in my symptoms and cluster headaches was the first on the list so i clicked...every little detail was me. I could not believe it there was actually a name for this piece of sh*t...At least I'm not crazy right!...After researching a bit more i found you guys and I was reading all your guy's blogs and couldn't believe that the way others dealt with it was the same. squeezing the temples so hard you think your going to crush the skull or sitting and rocking back and forth like a zombie...its just so crazy that there are so many people that cope the same way. Its so bittersweet that i have found ch.com. Sweet because I'm not the only one and bitter because others go through this same horrifying pain...i look forward to meeting all of you and am open to any advice you have for coping with this crap...Thanks

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Bob Johnson

CH.com Alumnus

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"Only the educated are
free." -Epictetus

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

Re: I always thought i was the only one...
Reply #1 - Apr 15^th, 2010 at 8:09am

Finding a headache specialist is the best single step you can take. Far too many docs, including neurologists, do not have the training or experience we need.
====
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

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

; On-line screen to find a physician.

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

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

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

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
====
Start with some basic learning. Explore the buttons (left) starting with the OUCH site and the multiple internal links there.
Explore the PDF file, below.

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

(144 KB | 27 )

Bob Johnson

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neuropath

CH.com Veteran

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Same Hit, Different Day

Posts: 218

Re: I always thought i was the only one...
Reply #2 - Apr 15^th, 2010 at 9:17am

As Bob says, it's important that you have a headache specialist confirm that you are dealing with CH. Although it is likely, from the description of your symptoms, that you have joined the right club, there are hundreds of different types of headaches and neither webmd nor your GP are generally the best diagnostic tools (many here will attest to that). Only a specialist can get you set up for an effective treatment strategy in my opinion.

Options you may want to discuss with your doctor could include the following.

A prednisone taper is likely to halt your pain for the course of the treatment, allowing your preventative treatment of choice to reach therapeutic levels. Generally, it is started at 60-80mg per day and then tapered down by 10mg every day or every second day to zero. Although you should be pain free for the duration, it is likely that the pain starts again after you have tapered down.

Prednisone is a transitional treatment and designed to start simultaneously with your prevent so that, once you are down to zero, your prevent has built up enough to "take over".

First line prevents here are Verapamil, Topamax and Lithium. Which one works best for you at what dosage is a discussion to be had with your doc. All of them require several weeks to take full effect.

Non-chemical alternatives / supplements used by quite a few here include Kudzu and Melatonin (particularly if you are being hit at nights) as well as treatments being discussed at clusterbusters.com.

O2 is the abortive of choice for most of us. Check the "oxygen info" tab on the left for usage instructions and tips on how to overcome prescription issues, if any.

Imitrex Injects are the mobile favourite. Mileage optimisation info on the left under "imitrex info".

Taurine/caffeine combo energy drinks, if consumed at the very onset of an attack, work for many here. They can abort an attack or significantly lower the kip level.

I have personally found lifestyle adjustments helpful, too. These include a histamine low/free and ph-neutral diet, a very rigid sleeping pattern and lots of water (check "water x 3" tab).

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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: I always thought i was the only one...
Reply #3 - Apr 15^th, 2010 at 9:37am

Not a thing I can add to the advice you've gotten so far, except patience. When I was in my late teens and early 20's, I kept going to the doc looking for a pill I could take to stop my headaches. That doesn't exist. While we can't cure these things yet, we can manage them. I'm 50 now, still getting visited by the beast, but not in fear like I used to be.

Get to a headache specialist and get your diagnosis confirmed. Figure out what you are going to try as a prevent, the med you take daily to reduce frequency and intensity, and what you'll use as an abortive. It'll take you a little work, but take it from someone who dicked around with it for the first 7-8 years, the time you put in now is well worth it in the long run. If it is CH, and it sure sounds like it is, it ALWAYS comes back.

For now, keep some energy drinks on hand, Red Bull sugar free is my favorite, but any containing caffeine and taurine will work, CHUG one down quickly at the first sign of a hit. Many can abort or at least really reduce the intensity of an attack that way. As much as possible stay away from aspirin, tylenol, ibuprofen, they do very little good, cause rebounds and rip up your innards.

Good luck on your journey, we're always open here!

Joe

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

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Lefty

CH.com Alumnus

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Gender: male

Re: I always thought i was the only one...
Reply #4 - Apr 16^th, 2010 at 9:58am

alyne518 wrote on Apr 14^th, 2010 at 11:54pm:

I could not believe it there was actually a name for this piece of sh*t...At least I'm not crazy right!

We'll have to get to know you a little better before we can make that diagnosis..

as regards to the headaches your description sounds all to familliar. You have been given some excellent advice about Docs and tempory solutions to combat the pain. In the mean time digest as much information as you can from this site and use it to your advantage.

Good Luck Sir... Wink

Lefty

"When money's tight and is hard to get
And your horse has also ran,
When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
— Flann O'Brien

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bejeeber

CH.com Hall of Famer

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Posts: 1359
Gnashville
Gender: male

Re: I always thought i was the only one...
Reply #5 - Apr 16^th, 2010 at 12:11pm

Well get ready to start a whole new chapter with CH, Alyne, where you start getting some real relief. This is what has happened for many people upon arrival here - ya came to the right place.

Neuropath laid a heck of a good summary of effective treatments on you.

For additional perspective, I'll mention that the O2 seems to be THE most popular abortive amongst the CH folks regularly inn attendance here, and that this recent Newsweek article should provide a good introduction to the very powerful CH fighting approach that is the main focus at clusterbusters.com:

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

« Last Edit: Apr 16^th, 2010 at 3:38pm by bejeeber »

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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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: I always thought i was the only one... Reply #6 - Apr 16^th, 2010 at 8:35pm Welcome, Your story sounds so much like all ours. Now learn it, and conquer it. Coach Bill
Back to top	boy i cant wait till it's my turn to give him a headache. paybacks a bitch IP Logged

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