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edwardbear
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A new clusterhead here
« on: May 20th, 2008, 4:45pm »
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Hello there, everybody.
I was diagnosed with a cluster headache a bit too late.
I suffered from them the past 5 years, and I knew something is wrong. Each second of that headache was driving me insane. I actually lack the words to describe the pain, but I really don't have to because you all know what this is.
 
First of all, let me introduce myself.
I'm 22 years old tech support in an online casino, from Bulgaria.  
I'm trying to have a normal lifestyle, with a girlfriend, a steady job, friends, etc.
So far, I lost 2 girlfriends, and I just quitted my last job as a sales representative, because I just couldn't handle customers.
 
The weirdest thing, 1 of the girlfriends caught me during an attack - she didn't know what was going on so she started to panic and left. When I tried to explain, all I met was - "All that for a headache?". I just felt weird, knowing that some people are completely ignorant. I just hope she never suffers like I had.
 
 
Anyways, I'm just glad I found a place where I can share everything about my pain and meet appreciation.  
 
My attacks are mostly during nights (4:00AM) and at least 2 more during the day - one in 10:00 am, one in 16:00. I haven't skipped a night since 5 months, haven't skipped a morning from 1 month, but it seems my 16:00 headache stopped occuring so often.  
 
I found that pacing in a room takes the edge off the headache. There's no imitrex in bulgaria, but I use sumatriptan in the form of the pill "Imigran". It rarely helps - even in large dosage (I might have misspelled that word).  
I tried biting myself and, well, yes, hurting myself in different manners to take the edge away, but I found that a broken finger will silence the headache for about 6 seconds.
 
I tried the oxygen method, but it has nasty side-effect.
 
I do have a question, when I went to the ER once, the doctor didn't take me seriously. I think he was suspicious of me to be a drug addict. Why isn't cluster headache accepted as an important disease? As a significant, life-changing disease?  
To be quite honest, since I started having my attacks more and more often, I find my personality to be changing. I'm getting quite aggresive during an attack. I cannot handle a conversation, let alone someone talking at me/to me.
 
There's no one to support me, to tell me that it'll be ok and I'll be fine one day. My current girlfriend helps me however she can. But I see it in her eyes that she suffers because of me and I'm quite confused on that part too. What to do?
 
All I want is some support from you guys. Each headache sucks the life away from me.
 
 
Last question, I'm a vegetarian, does that affect the headaches?
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kevmd
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Re: A new clusterhead here
« Reply #1 on: May 21st, 2008, 1:37pm »
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well you came to the right place for support.  Everyone one here understands your problems.  You make no mention of any preventative meds or Oxygen.  I recommend both in a hurry to try to gain control of your life.  Can you get an appointment with a neurologist?  Some ER docs have no idea what a cluster headache is.  So read the tabs on the left.  LEt us know if you have any questions.  And I never heard of a vegetarian diet being a factor in CH.
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Bob_Johnson
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Re: A new clusterhead here
« Reply #2 on: May 21st, 2008, 1:51pm »
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We have the same problems in the rest of the world: doctors who don't know anything about cluster headaches and, therefore, cannot treat their patients. We can give you some medical materials which you can share with your doctor and, if you are fortunate in have an open minded person, you can help teach him!
 
Start by printing out these two articles. They are the most current thinking about how to treat Cluster.
---
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe
 
------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:  
EFNS guidelines on the treatment of cluster headache and other  
trigeminalautonomic cephalalgias.  
European Journal of Neurology. 2006; 13: 1066–1077.  
 
Download free full text:  
http://www.efns.org/files/guideline_49.pdf  
(Thanks to "cluster" for link.)
 ==============
Then I would suggest that you obtain one of these two books. Either one will help you understand the problem.
 
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."Wink
 
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
=====
 
Explore the OUCH site (buttons left of this page). There is much good material for you to read. Some of the material would be good to print out for your doctor.
========
 
Finally, give some thought to the specific kinds of information you need, your questions, etc. and get back to us with another message.
« Last Edit: May 21st, 2008, 1:52pm by Bob_Johnson » IP Logged

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Re: A new clusterhead here
« Reply #3 on: May 21st, 2008, 3:54pm »
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Welcome Aboard Ed,
 
You've come to the right place.  Anything that works as a vasoconstrictor should help.  That includes Red Bull and ice applied to the top of the head on the hit side.  
 
What was the nasty side effect from Oxygen therapy?  
 
V/R, Batch
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Re: A new clusterhead here
« Reply #4 on: May 21st, 2008, 6:59pm »
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yep, we all know what your feeling. i fellow on here whos name is brew told me once not to let this change me. to live my life between the hits. it took awhile to understand it but now i do. getting the blues is all part of it as well, but i found that the beast got me for 45mins a pop, and their is not a damn thing i can do about.. but the other 23 hours and 15minutes are mine and i will not give it one more minute. coach bill
« Last Edit: May 21st, 2008, 7:02pm by coach_bill » IP Logged

boy i cant wait till it's my turn to give him a headache. paybacks a bitch
barry_sword
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Re: A new clusterhead here
« Reply #5 on: May 21st, 2008, 8:43pm »
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Hi Ed and welcome aboard. Sorry you have to be here.
 
I am also curious what side effect you get from the o2? It has worked miracles for me and so many here and when the hit is caught in time I have "O" side effects from the o2.
 
Everybody is different and sorry if the o2 is not working for you. I hope you find what works to stop the pain.
 
  PF wishes,  Barry  Smiley
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edwardbear
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Re: A new clusterhead here
« Reply #6 on: May 22nd, 2008, 11:03am »
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Thanks for the assistance, guys Smiley
 
I did went to a neurologist, and probably one of the best you can find in here.
The first neurologist I was to, was completely ignorant, and I still wonder how he got his diploma or ability to practice.... He diagnosed me with cancer... I decided that's not possible, so I went to seek a second and even third oppinion.
Second oppinion was that I'm getting headaches from stress and my asteghmatysm (no idea if I spelled that right).  
Third oppinion was the one I listened - the doctor was very careful in his diagnosis - I went trough a series of tests - CT scan, MRI, full blood test, electrocardiogram, all that's possible basically. After I fully explained my symptoms, he did the nitroglycerin test and while having a headache I was brought to an MRI scan, which basically confirmed my and my doctor's thoughts. Right now I'm suing the first doctor for malpractice.
 
The side effect of the oxygen - my cardiologist told me that frequent usage of 100% oxygen may damage the heart.
 
Also... good news, guys - I had only 1 short headache this morning. I think it's remission time after 9 months of suffering.
« Last Edit: May 22nd, 2008, 11:09am by edwardbear » IP Logged
seasonalboomer
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Re: A new clusterhead here
« Reply #7 on: May 22nd, 2008, 11:18am »
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on May 22nd, 2008, 11:03am, edwardbear wrote:
After I fully explained my symptoms, he did the nitroglycerin test and while having a headache I was brought to an MRI scan, which basically confirmed my and my doctor's thoughts. Right now I'm suing the first doctor for malpractice.
 
The side effect of the oxygen - my cardiologist told me that frequent usage of 100% oxygen may damage the heart.
 

 
I've never heard of a neuro doing the "nitroglycerin test" and then putting you in to an MRI scanner. That's like a dentist drilling without novacaine just to see if your nerves are working. Sounds kind of sadistic. I'd be as tempted to bring complaints against this guy as I don't believe a "nitroglycerin" test is the route most chosen for diagnosis.
 
As for the cardiologist input -- clusterheads generally do not use it for long periods of time. If it isn't working in less than 15-20 minutes (usually quicker) it probably isn't going to do it for you.
 
Scott
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edwardbear
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Re: A new clusterhead here
« Reply #8 on: May 22nd, 2008, 11:28am »
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I aggreed to the test, plus the doctor is a good family friend. I was actually willing to do it, so that doctors could finally find out what's going on.
 
There's 1 thing worse than a cluster headache - to not know what's wrong with you.
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seasonalboomer
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Re: A new clusterhead here
« Reply #9 on: May 22nd, 2008, 11:37am »
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on May 22nd, 2008, 11:28am, edwardbear wrote:
I aggreed to the test, plus the doctor is a good family friend. I was actually willing to do it, so that doctors could finally find out what's going on.
 
There's 1 thing worse than a cluster headache - to not know what's wrong with you.

 
I'd disagree... the one thing worse than a cluster headache is the next cluster headache.  
 
 
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Re: A new clusterhead here
« Reply #10 on: May 22nd, 2008, 9:32pm »
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what boomer said!!
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
edwardbear
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Re: A new clusterhead here
« Reply #11 on: May 25th, 2008, 5:04pm »
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I fully agree on this one.
 
While I was google-ing around I stumbled upon some guy's website who claims to have the cure for CH.
  www.clustercure.com is his website, and he's selling a book for 50 bucks. I was wondering, is this guy for real? Anyone has an observation or has bought this thing? I'm so desperate I might do it.
 
My other question is, has anyone tried something beyond conventional medicine? Like Tibet medicine or Indian medicine or something like that?
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Re: A new clusterhead here
« Reply #12 on: May 25th, 2008, 5:35pm »
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If you're looking for a reprint of some of the stuff you'll find here, spend the $50. If you want to spend it more wisely, stay here and send the $50 to DJ.
 
And if you're looking for alternative treatments, go here:
  www.clusterbusters.com
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Re: A new clusterhead here
« Reply #13 on: May 25th, 2008, 9:54pm »
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on May 22nd, 2008, 11:03am, edwardbear wrote:
The side effect of the oxygen - my cardiologist told me that frequent usage of 100% oxygen may damage the heart.

 
Edward,  
 
The doctor that said 100% oxygen may damage your heart apparently has no training in aviation physiology, aerospace medicine, or anesthesia.  What he told you sounds like an old wives tale.  
 
Anesthesiologists routinely use 100% oxygen to revive patients from anesthesia following surgery.  Doctors routinely prescribe 100% oxygen for COPD sufferers.  
 
If used properly to abort your cluster headache attacks, you'll be on 100% oxygen for less than 10 to 15 minutes for each abort with two or more hours breathing normal air in between attacks.  That exposure level is also consistent with hyperbaric oxygen therapy (HBOT) used by the US Navy and several civilian hospitals.  
 
It's all a matter of exposure.  Pulmonary oxygen toxicity becomes a problem too, but you would need to stay on 100% oxygen for 6 to 12 hours continuously in order to start feeling the symptoms, and they're reversible.   You can also drink too much water and die from it.
 
US Navy and Marine Corps pilots have been breathing 100% oxygen while flying military tactical aircraft for over 60 years with no instances of heart or lung problems attributed to 100% oxygen.   I have over 3000 hours flight time breathing 100% oxygen and I'm still here...  My heart is doing great at 63 years of age.
 
You may want to print the following links and take them to your doctor the next time you see him then ask him for a prescription for oxygen.  The prescription should read like the following:
 
"Oxygen therapy with a non-rebreather mask at a flow rate of 12 to 15 liters/minute AS NEEDED FOR CLUSTER HEADACHES."
 
The US National Headache Foundation lists oxygen therapy as the first abortive of choice in treating acute cluster headache attacks.
 
http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=6582& nbr=4142
circa 2004
 
"Oxygen inhalation is the standard recommended therapy for cluster headaches. Treatment is initiated with 100% oxygen by non-rebreathing facial mask. Flow rate is set at 7 to 10 liters per minute and treatment should continue for 15 minutes."
 
A more current recommendation comes from Dr. Todd Rozen MD at the Michigan Headache & Neurological Institute (MHNI), Ann Arbor, MI
 
The following study is dated as well, but it clearly points to the use of oxygen therapy at 15 liters/minute providing 100% relief from the pain of cluster headache attacks:
 
http://www.mhni.com/ArticlesHtm/HighOxygenFlowRates.htm
 
Dr. Rozen and the other neurologists at MHNI have a case load of well over 100 cluster headache sufferers so have far more experience in diagnosing and treating folks with the cluster headache disorder than most.
 
Take care,
 
V/R, Batch
 
« Last Edit: May 25th, 2008, 10:19pm by Batch » IP Logged

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Re: A new clusterhead here
« Reply #14 on: May 25th, 2008, 10:10pm »
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Get another Doctor!!!!!
There has to be one better than this guy. Nitroglycerin triggers an attack.  It's been used (with consent) to study CH (see link:  
http://www.ouch-us.org/chgeneral/hypothalamus/hypothalamus2.htm ) but for diagnosis????  Angry
 
 
 
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Re: A new clusterhead here
« Reply #15 on: May 26th, 2008, 2:08am »
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Thing is, I was the first patient of my doctor with a CH. He wasn't sure it was that, so he confirmed it like that.
 
I just ordered a 100% oxygen non-rebreathable mask from my doctor + lithium cause it has a good record on breaking chronic ch.
 
*edit* 100% oxygen mask failed, no where to be found in Bulgaria, sold for house-hold usage. Only in hospitals... I would have to order from the states obviously.
 
I avoided a CH today using large amounts of coffee today, but now I have a caffeine headache. Could anyone give a hint how to avoid those? Would a regular painkilller do the trick?
« Last Edit: May 26th, 2008, 7:53am by edwardbear » IP Logged
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