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introduction (Read 1060 times)
graemewalford
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introduction
Dec 15th, 2012 at 9:47am
 
Hi, I've decided to turn to the WWW to find others who work though the same pain I do and I've found it. I guess I just want to tell my story and my experiences, as I am sure many on here do. Sorry if everything I write is obvious but this is not only the first forum I have joined it is also the fist time I've been able to "talk" to anyone about my experiences who will understand. I first started getting cluster migraines around the year 2000, at the age of 24. Often unexplained in the timing and most often inconvenient I suffered through them wondering what caused it. Usually lasting about 2 hours max and coming in month long doses of one sometimes two a day, My bosses must have loved me when I became useless on the job, which isn't saying much for a fairly unskilled young laborer. I found that a Coke or something with caffeine would speed the dissipation. Dissipation has often felt like someone pouring cool water slowly down the left side of my head and down the neck until it was just a twinge, leaving me with a feeling of euphoria. Its funny how two hours of pain leaving can make you feel so good. Its all about context I guess. For some time I had no inkling as to what was causing it, then about 2 years ago I started to think it was allergies, based on the time of year I was getting them, usually spring and fall, pretty common from what I  can tell. I started treating it as such by use of  nasal irrigation (ie Neti Pot) and eating lots of local honey from my neighbor. Well last spring and this summer I was CH free, I was sure I was onto something. A slight fast forward to now, late fall and they are back, although not as frequent or severe. I believe they are related to Barometric pressure changes. This summer was beautiful in northern Vermont, most of it spent with sunny days, rare for Vermont and not a single glimpse of a CH, well, once fall finally decided to kick in the weather became unsettled, shifting days of sun and rain and more sun followed by snow etc... and with it came the headaches. I like a good beer every now and then, but not when the cycle is on, it acts as a perfect trigger, without fail. Nothing worse than hanging with friends enjoying a cold one and having to step away to recover. But its the hand I've been dealt and I am trying to work it out. This morning I woke with that old familiar feeling and promptly did an irrigation of the ol' shnoz and quickly drank two cups of coffee and as we speak I am feeling like I'm on top of the world. It became nothing more than a feeling, a warning. I've also found that 2 aspirin at the first feeling helps speed or even avoid the process of having a CH.
   By the way, I have never been officially diagnosed, however that feeling of an ax splitting open the left side of my head, lasting for only a couple excruciating hours, and only occurring a few weeks a year seems to me a classic cluster migraine. I've seen enough people go to hospitals to get regular migraines treated having nerves cauterized, getting morphine etc with no helpful results. I feel safer keeping this out of the health care system.
Keep up the good fight and its nice to meet you all
Sincerely,
Graeme
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Bob Johnson
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Re: introduction
Reply #1 - Dec 15th, 2012 at 11:06am
 
Take the cluster quiz, left. A rough screening device but not a substitute for a good diagnostic work-up.

That coffee and aspirin seems to knock a developing attack out says--not cluster.

That folks have had bad treatment in ER rooms is not unusual (because docs there are trained to treat the kinds of serious problems commonly seen and headache isn't in the category.

$ is the issue as is finding a good headache specialist to do the diagnosis--but that's the bottom line:
---
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.
============
You may find some useful material in the following...


Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
====

Three 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 Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  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.



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Bob Johnson
 
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Tim in Texas
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Re: introduction
Reply #2 - Dec 15th, 2012 at 1:08pm
 
Welcome to the sanctuary. I err "we" completely understand the relief you felt when you FINALLY found someone else who ACTUALLY understands. As you may know by now, treatments for CH's are different from person to person. Some may sound bizzaare too. I saw that you flush your sinuses when you get attacks. I have considered doing that too, but out of fear of having adverse effects....I've steered clear from it. Since hearing that it brings you relief, I'm willing to try it. I do have a few questions first for you though. 1- which side do you flush from? The side you get your head aches? 2-solution concentration. Just using one pack of salt? 3-temperature. Hot or cold? 4-frequency Are you flushing only during attacks? 5-why the pot over the bottle? I have both but like the bottle better.

I'm not exactly sure on your experience with CH's but have a little advice for you to give to your supporter. This is something I had to explain to my current girlfriend so she could be of the little use supporters attempt to give.
Man explain to "whomever" when you are not being attacked that there isn't much anyone can do to comfort you. Having made a "plan" with my girlfriend eliminated a lot of frusteration on both ends.
I have a "safe area" so to speak. When I am in this area, nobody is allowed in. I use my closet because its cold and dark and its a low traffic area.
I had to explain to my girlfriend to please not speak to me and I would iniatiate any conversations. Just because I'm out of my area and walking around, doesn't mean that I'm free of pain. You know how it is to walk the beast. I also explained to her, that when I'm walking around that I'm in the most intense pain and try to keep my son clear of me as well.
Doing this really helped both of us because she was able to understand better why I am so grouchy and unapproachable when under attack. I'm certain you are fully aware of everything I mentioned, but maybe your supporters aren't.
Here is my typical ritual: I mainly have them at home but if not, I just seperate myself from as many people as possible and look for the coldest, quietest, and darkest place I can find. At home, I go straight to the closet and sit on a milk crate. (There is something about the heigth that makes it most comfortable, this is specifically kept in my closet for this reason and is never allowed to be removed...plus I can sorta rock in it if need be) I then cup both eyes with the palm of each and and begin some basic breathing exercises. Sometimes I count to 500. Usually at this point I know how intense it will get. Generally I stay in there for 30 minutes to an hour. My rule of thumb is that I come out when I quit sweating and my son and girlfriend also understand to absolutely not disturb me when I'm in there. I deal with the K-5's to 7's with the closet treatment. When the beast comes, I will usually walk around in the bedroom clentching the walls and cry not to let my crying get to loud. But if I know its gonna be really bad, I ask my girlfriend to take my son out for ice cream so he can't hear me. Once they leave I show the beast around the house, moving from room to room looking for the most comfortable spot I can find. I never go outside because the last thing I need my idiot neighbor to do is ask me if I have a headache and start rattling off home remedies of asking if I need asprin. Sometimes I can find a spot where I don't need to keep moving and I always make sure that its not in a spot where my son and girlfriend will see me when they return.....just in case its still with me.
Basically that's my routine. In the near future I plan on getting O2, but can't right now because my insurance hasn't kicked in yet. I was lucky enough to discover that my boss also suffers from CH's and he knows a specialist that has not problems prescribing me O2. I want to get the O2 first and then get offically diagnosed, and look for treatments. Sorry for such a long reply. Feel free to PM me if you would like your supporter to hear whatever about these nasty headaches from someone other than you, so they know that they aren't bullshit. Hell they can even speak with my girlfriend if they need someone to relate to. Welcome to the site!
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WillCoo
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Re: introduction
Reply #3 - Apr 11th, 2013 at 9:49pm
 
Greame!

Welcome to the site! I can say I fully understand the relief of finally being able to explain and be understood as we are on this site. I'm sure you will hear a lot about 02, D3, Omegas, Verapamil, Red bull so on so forth. You will also probably hear that you should be diagnosed numerous times, I think that's pretty common advice around here. If you have any questions, ask away or feel free to search for them. If you just wanna talk feel free to message me. Good luck on your journey.

WillCoo
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« Last Edit: Apr 12th, 2013 at 10:44am by WillCoo »  
 
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wimsey1
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Re: introduction
Reply #4 - Apr 12th, 2013 at 8:39am
 
WillCoo wrote on Apr 11th, 2013 at 9:49pm:
You will also probably here that you should be diagnosed numerous times, I think that's pretty common advice around here.


It's common advice because it is true. So many conditions can mimic the pain of a cluster and the treatment is different. For example, there is one condition that pretty much dissipates with indomethacin. Rare, but then again, so are CHs. And indo has no effect on us who do have CHs. Aso, some of the better preventatives and abortives can only come with a Rx, which requires a doctor who knows how to treat us. So that said, find a good CH neuro and begin an effective treatment. blessings. lance
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