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Need suggested remedies to discuss with doctor. (Read 635 times)
urothane
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Need suggested remedies to discuss with doctor.
Jan 29th, 2009 at 11:38am
 
Hello Clusterheads,

  This fall I was technically diagnosed with Paroxysmal Hemicrania, which is a cluster headache that never goes away. In the last 4 years I have had just a month of pain free days without drugs (this summer). I have a consistent 1-2 (kip scale) headache all day on my left side accompanied by the normal cluster symptoms like runny nose and eye dropping. I feel lucky if this is what I have all day. However most days I have 3-6 spikes between 7 and 9 on the kip scale.

   My internist tried me on Topamax and several anti-depressants. If they worked, they cut out the bottoms (1-2) and top (8-10) and left me with a constant headache in the middle.
 
   He referred me to the neurology department at the Medical College of WI where I was properly diagnosed. They have tried me on the following items:
   O2 - no effect
   Indocin - Mildly effective for first two weeks and then no effect
   Imitrex, Treximet, Frova, Amerge, and some other Triptan based oral drugs - If they worked I also suffered an acid trip. Nothing quite like hallucinating at work. The doctor suggested sticking with these and taking an anti-psychotic as well. Not cool.
   Imitrex injection - No effect (and insurance won't cover)
   Nortryptaline - I have been taking 50 mg daily for just over two months and had only two headaches over a 3 with most days being completely pain free. That is until 5 days ago. For the last 5 days I have endured a headache consistently between a 5 and 9. Nothing helps now. I continue the current drugs.

   I have an appointment with the neurologist on 2/13 and need to take in some ideas because the department there has limited experience with my condition or cluster headaches in general. And they are the best place to go in the state.

   In the last month things that have changed in my life:
        I went to a completely vegan diet from a lacto-ovo-vegetarian diet
        I started exercising again, but limited it to light cardio and yoga.

  I don't drink, don't smoke, and cut all soda out of my diet over a year ago. I drink a gallon of water a day now.
 
  Are there other legal options left that I can discuss with my doctor? If my only options are not legal, I will discuss those with my brother instead.

Thanks for any and all help.
Greg
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QnHeartMM
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Re: Need suggested remedies to discuss with doctor.
Reply #1 - Jan 29th, 2009 at 11:41am
 
my husband Guiseppi takes Lithium in cycle, on a graduated increased amount, up to 1200mg per day. It works as a preventative. Perhaps discuss that with your neuro.

Also, are you using the o2 the way described in posts here? You can have any outside air and you want a pretty high flow. There's alot of info to the left that you might want to print out and take with you.
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urothane
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Re: Need suggested remedies to discuss with doctor.
Reply #2 - Jan 29th, 2009 at 11:54am
 
When I had the O2, it was the set up they describe here at 15lpm. I actually tried it three times. The first two had zero effect, but the third I felt a little worse.

I found this site after my first visit to the neurologist and did take some of these pages with me as she wasn't as familiar with clusters as I would have liked.

I guess something else to note, is that I have always had strange reactions to medications. Most "downer" drugs make me hyper (like codeine). My internist thinks I have Malignant Hyperthermia and that is the cause of my reactions to medications. The neurologist thinks the headaches and the malignant hyperthermia may be related.

Thanks for tip on Lithium.
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Bob Johnson
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Re: Need suggested remedies to discuss with doctor.
Reply #3 - Jan 29th, 2009 at 6:29pm
 
Here are two lists of current therapies. Print out both and use to discuss your options.

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:

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Print whole article (link, 2nd line). Study for your education and then see if it doesn't open some doors for discussion.

 
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 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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