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Cluster Headache Help and Support >> Getting to Know Ya >> help me
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Message started by 2Bjosie on Aug 10th, 2014 at 1:15pm

Title: help me
Post by 2Bjosie on Aug 10th, 2014 at 1:15pm
i just started getting these "headaches" 3 weeks ago. Dr says they are clusters and I found this website. I can't imagine how anyone has lived with them for years. I have been trying to find anything that will help. ibuprofen is useless - topimax only worked 1st day. D3 regimen sounds promising - what are the specifics?

Title: Re: help me
Post by Guiseppi on Aug 10th, 2014 at 1:33pm
Welcome to the board, this is your tutorial on CH! By no means is this all inclusive, just a good start! . Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Title: Re: help me
Post by LasVegas on Aug 10th, 2014 at 1:40pm
Read what Joe stated ;)

Pain Free Wishes!
-Gregg in Las Vegas

Title: Re: help me
Post by Bob Johnson on Aug 10th, 2014 at 1:46pm
If your doc has given only Top. as the sole treatment--it's a sign that he doesn't know his stuff!

If he has given you other instructions/meds, please give us all the information so that we won't be adding to the confusion.

Until it's clear that he is skilled in treating headache disorders, I'd not accept that you have Cluster. So, don't be shy about asking him directly about his experience in treatat a broad range of headache types.

While you are getting these issues cleared up, DON'T play around with other treatments: mixing leads to confusion for both you and any doctor you are seeing. Good diagnosis always comes before treatments.

Print out the PDF file, below. It's a list of the common treatments for Cluster. Any well trained doc will be working from these meds. If not, time to be cautious.

While you doing this checking, start reading for you information:


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

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------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
  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.



Title: Re: help me
Post by 2Bjosie on Aug 10th, 2014 at 2:51pm
thanks to all for info! :)

Title: Re: help me
Post by 2Bjosie on Aug 10th, 2014 at 2:57pm
Recently diagnosed after all other tests were negative & am exhibiting classic cluster symptoms. Have only seen general doc, Neurologist appt next week. No other meds than Topomax and having trouble functioning so trying natural supplements to try to help

Title: Re: help me
Post by Bob Johnson on Aug 10th, 2014 at 4:44pm
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.
====================================

Urge you to seek for a specialist, if at all possible.
-----
LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE 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.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE 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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.


Title: Re: help me
Post by feisty on Aug 14th, 2014 at 12:29am
So many great replies!

I just want to echo that trying the D3 regime is worth it - inexpensive, safe, and DIY. Some folks are pain-free within DAYS!

Also, oxygen has helped my dh with the attacks - but do use as described in Guiseppi's link above. I set my dh up with oxygen in one day...it was intimidating to figure out but so worth it.

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