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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> So what I need from my Dr. is...?
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Message started by Kim Dyer on Jan 28th, 2009 at 11:31am

Title: So what I need from my Dr. is...?
Post by Kim Dyer on Jan 28th, 2009 at 11:31am
I've had cluster headaches since I was 15 (now I am 19). My 4th episode (in my life) started last Thursday. I went to the Dr. yesterday for more medicine and she told me that I have CH... (First doctor of 4 years that has told me that I actually have this) She was very hesitant about giving me Trexamet and didn't suggest anything else. In the end, I got the Trexamet and a steroid shot. I think she just don't know much about CH.

Today, I am going back (thanks to this amazing site) and asking for more. My question is, what should I ask for?

I've read a lot on here, and I have a lot to be printed out to take, but specifially I should ask for:

*Oxygen
*Sumatriptan in injection & nasal form
*Verapamil (120-160 mg a day for 3x a day)

Is this all I should ask for? I've taken Imitrex injections before, and from what I remember, they worked more quickly but still seemed to take some time. I've also tried Topomax but that was finally prescribed to me at the end of my last cycle, so I'm not sure if the Topamax worked or if my cycle just ended. Also, during my last cycle, my neurologist gave me some caffiene pills and Depakote, but because I was taking so much medicine I can't honestly say that I know what worked and what didn't, or if my headaches just ended because it had been 4-5 weeks.

:-[

All in all, I really just want to know what medicines should I ask for? My dad is an EMT so he can get oxygen for me, but he seems to like the idea better if the doctor prescribes it... and of course I have the Trexamet pills already. I'm just assuming that Verapamil is good because of all the successful stories I've read on here.

Title: Re: So what I need from my Dr. is...?
Post by Guiseppi on Jan 28th, 2009 at 11:47am
Most importantly is get oxygen prescribed. It's the safest, most effective abortive out there.

The best plan is generally a 2 pronged approach.

1: A good preventative strategy. That's a medication you take every day, while you are on cycle, to reduce the frequency and the intensity of your hits. I use lithium, verapamil is also a very popular preventative.

2: A good abortive strategy, a headache starts, now what? Your first line should be oxygen. No side effects, it's cheap, and has a great track record on the board. Since I began using oxygen, the imitrex injectables are a rare event.

Be sure and print out the info from the board, especially on the 02. Doc's unfamiliar with CH are really hesitant to go the 02 route without some supporting documentation. Good luck!!!

Joe

Title: Re: So what I need from my Dr. is...?
Post by DennisM1045 on Jan 28th, 2009 at 12:10pm
Hi Kim,

We are not Doctors and any Doctor that was here would be really out of line to suggest any specific list of things to ask your Doctor for.  You are a unique individual and only your Doctor can tell you what may be harmful in your situation.  

Triptans and Verapamil have interactions with other medications and is contraindicated for patients with heart issues or low heart rate / blood pressure.  

Oxygen is safe for most but not if you have a lung disease.

So everyone is different and a qualified Doctor needs to be in charge of your care.  CH won't kill you but some of the stuff we resort too can when not used properly or by the wrong patient.

So unless your Dr is up for a crash course in CH (which he/she may be) the one thing I would ask for is a referral to a Neurologist who specializes in headache.  That would be the Dr to work through all this with.

You should look at these resources to see if there is someone specific in your area with the necessary experience:

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-Dennis-

Title: Re: So what I need from my Dr. is...?
Post by Bob_Johnson on Jan 28th, 2009 at 12:54pm
Treximet is marketed for migraine, not cluster. It's not useful for us--and that suggests you are correct, have a doc without experience. Agree that looking for another doc is indicated, if you have that option.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.
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Print this article [see link] for your learning, perhaps, even giving a copy to your present doc.

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (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]
=========
Print out the first article and use it to guide a discussion--with any doc you use--on treatment options.

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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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Title: Re: So what I need from my Dr. is...?
Post by DennisM1045 on Jan 29th, 2009 at 2:29pm
How did you make out Kim?

-Dennis-

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