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at the end of my teather (Read 1273 times)
packersunuk
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at the end of my teather
Apr 13th, 2010 at 11:18am
 
Its been 14 months and here we go again,
Hello to all of you my name is Paul and have been suffering with ch for about 8 years with the usual cycle of 2 to 3 months of hell and then a year later it all starts again, I'm currently 3 weeks in and after years of browsing decided to join the family. My usaul cycle is an early evening attack followed by a rude awakening from my sleep two sometimes 3 times a night in a 7-8 hr period and i gotta be up at half 5.
For years i was given painkiller after painkiller which 90 percent of the time does nothing, until probably just over 2 years ago i was shown an article in a medical book describing ch and every symptom was bang on but still i got no real treatment and had to simply suck it up, Last December when i felt the shadows starting my doctor recommended acupuncture as he felt it was pressure on the neck causing the pain but hey presto that obviously did not work as they are back seemingly worse then ever, it kinda really annoys me that all the treatments recommended on here have never even been mentioned to me, like many have said before i really don't think standard gp's get it
I was wandering what you guys suggest i do next.
  Thanks for reading
  Paul
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Cathi_Pierce
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Re: at the end of my teather
Reply #1 - Apr 13th, 2010 at 11:30am
 
Welcome, Paul, and so sorry you need to be in Clusterville.
Not sure you have found the right Dr as yet, if your Dr is suggesting either otc or prescription meds to manage this beast.
There's a saying around here. Simply put, when you're at the end of your rope, tie a knot in it and hang on...not trying to 'blow smoke", but it's soo true! CH will not kill you.......even though you'd wish so at times,
Perhaps printing out some info here, about 02, V4rapamil and making another appt with Dr, with some guidance from you he JUST might learn how to treat a Clusterhead!
I soo hope this cycle is drawing to an end for you!
Post here about your progress, ask questions, whatever you need. This is a wonderful group of people who really care- and UNDERSTAND.....so,

PF wishes to you,
Cathi
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
 
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bejeeber
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Re: at the end of my teather
Reply #2 - Apr 13th, 2010 at 11:56am
 
Hiya Packer,

Well the story of your encounter so far with the medical profession is unfortunately all too common, but things are absolutely looking up for you now, because there are plenty of things to find out about here that have the potential of offering significant relief.

I'll start with two that I believe are widely agreed upon by the CH regulars here:

  • Seek out a headache specialist. Here's where you'll have a better chance of getting proper meds. (My $0.2: Don't just do whatever that specialist says without question though, you'll be receiving better care, but not necessarily great. Plus the arrogant a-holes commonly make you wait a MONTH or TWO for an appointmenrt)


  • O2 a la the oxygen info link to the left of this page. Can be procured via prescription from a doc, or without prescription from a welding supply place (in the US at least).


Personally I use O2 as my first line abortive, half dose imitrex injections as a powerful backup in case I can't get to the O2 or it doesn't work.

You just might be interested in the clusterbuster approach covered in this recent Newsweek article too:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

There's a ton more to grok here, including the subject of preventative drugs - yep you came to the right place.  Cool








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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.
bejeeber bejeeber Enter your address line 1 here  
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Bob Johnson
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Re: at the end of my teather
Reply #3 - Apr 13th, 2010 at 1:21pm
 
Start to learn some of the basics and then find a headache specialist.
----------
 
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]
==========
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 Login or Register On-line screen to find a physician.

5. 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.

6. 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.
======
Print the Robbins list and use it to discuss your options when you see the doctor. Just knowing the names of common treatments will help be comfortable....

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

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
====
As you have time, explore the buttons (on left) starting with the OUCH site. It's full of good material.


 






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« Last Edit: Apr 13th, 2010 at 1:24pm by Bob Johnson »  

Bob Johnson
 
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BudO
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Re: at the end of my teather
Reply #4 - Apr 13th, 2010 at 7:49pm
 
The advice you'll find in these forums is generally outstanding - and this comes from one who has been helped immensely by the folks here.

First and foremost follow all the advice about finding that special Neurologist who specializes in Chs (as best one can with such a rare medical condition). I was fortunate to find such a physician at the University of Washington Medical Center Headache Center. It's a 110 mile trip for me each way to see my CH Neurologist but I can reach her by phone almost any time. The large teaching hospitals may prove to be a good lead for you.

Each of us Clusterheads has symptoms which present differently and a treatment plan needs to be personalized (and modified after the initial treatments have some effect). In general you probably should be on preventive medications such as Verapamil (I also am "forbidden" from using even OTC pain meds with any regularity as they may cause "bounce back" headaches and it may take up to 6 weeks for these meds to clear from the body) Also, a specific plan of action should be in place for the start of a cycle (assuming you have cycles). In my case the start of a new cycle calls for taking a 2nd Verapamil dose daily; starting a Prednisone therapy; using oxygen as the primary/initial headache abortive (with Imitrex injections as an expensive back up); and doubling my nightly Melatonin dose to 20mg to induce sleep.

In the 2 semi annual cycles I've had since I started my current treatment plan I still suffer greatly the first 2-3 days/nights but the cycle begins to be disrupted considerably thereafter. It's still a 7-9 week cycle but the frequency and severity of headaches and shadowing is greatly reduced and is responsive to oxygen therapy over 90% of the time.

Most important is the education you will receive on this ailment from a knowledgable Neurologist - keeping logs to learn to predict a headache soon to come by the incidence of eye tearing and/or sneezing/ runny nose for example.
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Skyhawk5
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Re: at the end of my teather
Reply #5 - Apr 13th, 2010 at 9:20pm
 
Educate yourself about CH, then try to educate the Dr. If he/she won't listen then you need to find a better Dr. Most Dr's have no clue about CH and treatments, the better ones will listen to the patient.

CH is aka 'suicide headaches', try telling the Dr that.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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neuropath
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Re: at the end of my teather
Reply #6 - Apr 13th, 2010 at 10:02pm
 
Hi Paul,

Sorry you had to sign up to the club.

You may want to discuss some of the following options with your doctor, which as others have, I recommend is recruited not from the alumni of GPs but from a list of headache specialists or neurologists specifically trained on headaches.

A prednisone taper could be one option to stall the beast until your preventative treatment of choice has reached therapeutic levels (in most cases this takes several weeks). Most folks here start at 60-80mg per day and then taper off at 10mg per day or every 2nd day down to zero. Most experience a pain free period during the course of the treatment, yet the pain is likely to set back in once you have tapered down. Consequently, it is important to start your prevent simultaneously with the prednisone taper. On occasions the taper can break a cycle, but it's rare.

Prevents of choice here are Verapamil, Topamax and Lithium. A choice to be made with your specialist. All require some time to take effect. Herbal alternatives / supplements used by some are Kudzu and Melatonin, particularly for nighttime hits. There are numerous others you can read about here but also on clusterbuster.com.

O2 at flow rates of 15 lpm plus is the abortive of choice by most. Read the "oxygen info" on the left of this page for proper use instructions. Prescription issues can be overcome by a visit to the welding supply shop, regulators are found on ebay. Rule of thumb: higher flow rate = quicker abort.

Mobile abort solution most favoured here is Imitrex injections. "Mileage optimisation" info on left tab "imitrex tip". Olanzapine is an equally effective but significantly less expensive alternative if cost/insurance is an issue.

Taurine/caffeine energy drinks are favoured as a support for attack abort. When consumed at the very onset of an attack, they can abort or significantly reduce kip level of attack.

Other tips include histamine low/free and ph-neutral diet, "water x 3" and regular sleeping patterns to keep the hypothalamus at a steady rhythm.
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shaggyparasol
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Re: at the end of my teather
Reply #7 - Apr 14th, 2010 at 12:57am
 
Hi Packersunuk!  Hmmm, what would I suggest?  Well since you already have a diagnosis so you know it is nothing more serious....

Skip the frustrating trip to the doctors that cost too much anyways and:
-use O2 as per the recommendations on this website.
-liberal use of caffeine and/or energy drinks.
-try the kudzu/melatonin cocktail mentioned above (I don't have experience with this, but many say it works).
-Check out the Newsweek article noted above and proceed accordingly.

That should have as good a result as what anyone else is getting without the frustration.

That's just me though, not telling anyone what to do Wink(and a wink it is!)

--Shaggy
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packersunuk
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Re: at the end of my teather
Reply #8 - Apr 14th, 2010 at 10:10am
 
Thanks for taking the time to assit me in my time of need. I have arranged a appointment with my gp and will let you know how it goes down.
  Paul
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