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Need Help ... First Cycle in 2 Yrs. NOthing Works (Read 1556 times)
RollTide87
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Need Help ... First Cycle in 2 Yrs. NOthing Works
Aug 22nd, 2008 at 9:43pm
 
I posted on here a couple of years ago and was doing quite well til this past spring and then wham. I have been having clusters pretty regularly since May. Sometimes 4 and 5 times a day. The neuro ... a new hotshot and world expert thinks I may be going chronic has had me on Prednisone, Verapamil, and Topomax. Now just Prednisone and Verapamil. The last few days I'm down to one or two a day. I've had CH since 1985 (starting at 19 yrs old). So now I'm 43. For the last 15 years I've been having them every other year and in the winter. Cycles usually last 4 months. Now this year ... the summer. Bummer. I'm ready to try something different. Help? And Roll Tide!
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blawrence
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Re: Need Help ... First Cycle in 2 Yrs. NOthing Works
Reply #1 - Aug 22nd, 2008 at 10:11pm
 
I'm so sorry your here and I hope you feel better soon but I don't hear you saying anything about Oxygen? Do you have it? I'm not a CH myself my hubby is but his O2 is the first thing he grabs?  I've read that Red Bull helps in a pinch.
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Guiseppi
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Re: Need Help ... First Cycle in 2 Yrs. NOthing Works
Reply #2 - Aug 22nd, 2008 at 10:14pm
 
If those are the only meds you're using we can provide LOTS of help!

First, get oxygen. A high flow regulator, at least 15 LPM flow, a Non Re Breather mask,  start huffing it at the first sign of an attack. I can abort in less then 10 minutes that way.

Have you tried slamming energy drinks at the beginning of an attack? Monster, Rock Star, any containing the combo of caffeine and taurine. Many can abort or substantially reduce a hit that way.

Have you tried imitrex injectables or nasal sprays? A little pricey but when all else fails it'll stop an attack for me. (The injectable, I haven't tried the nasal spray but have read success stories by many who have)

If the verapamil and topomax aren't working any more, give lithium a try as a preventative medication. I take 1200 mg a day while on cycle, blocks 80% of my attacks. Takes about 10-14 days to get up and running in my system, I use a prednisone taper during that time to hold the beast at bay.

Lots of reading for you to do to get caught up on what's working these days. Hope we can catch you a break!

Guiseppi

edited again...yeah...still can't spell
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« Last Edit: Aug 22nd, 2008 at 10:15pm by Guiseppi »  

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DennisM1045
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Re: Need Help ... First Cycle in 2 Yrs. NOthing Works
Reply #3 - Aug 23rd, 2008 at 8:10am
 
Welcome back my friend.  Sorry the beast hasn't lost your address yet. 

I agree with what Guiseppi said.  Every word of it.

How much Verapamil were/are you taking?  400mg is my magic dose and is pretty effective.  I still have days of shadows (like yesterday Roll Eyes ).  What breaks through I hit with Oxygen.  What little breaks through that I hit with Imitrex injections.

There are other options.  Educate thyself  Cool  Knowledge is the best weapon.  Here are some links to the latest and greatest.

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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This is a great source of links and info on Oxygen.

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-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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CH Keith
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Re: Need Help ... First Cycle in 2 Yrs. NOthing Works
Reply #4 - Aug 23rd, 2008 at 8:52am
 
Our cycles sound similar except I'm a summer cycler every two years.  When I used the verapamil it took a couple weeks to kick in, but when I stopped taking it, they came right back a week or two after.

I tried the energy drink suggestion and was surprised, not only that it worked, but how quickly.  I didn't get a hold of the O2 until the end of this cycle, but I have to think that it's worth a try.  Best of luck to you.
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thebbz
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Re: Need Help ... First Cycle in 2 Yrs. NOthing Works
Reply #5 - Aug 26th, 2008 at 1:40pm
 
Try some readng here, believe it or not it works.
clusterbusters.com
all the best
thebb
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Batch
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Re: Need Help ... First Cycle in 2 Yrs. NOthing Works
Reply #6 - Aug 26th, 2008 at 11:26pm
 
Have you tried oxygen therapy at 15 liters/minute?
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Bob Johnson
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Re: Need Help ... First Cycle in 2 Yrs. NOthing Works
Reply #7 - Aug 28th, 2008 at 7:01am
 

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)
 
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============================================

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
========
========
 
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 best overview articles I've seen. Suggest printing the full length article 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]
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Bob Johnson
 
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