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Newly diagnosed sufferer...Q: Imitrex forms (Read 1088 times)
death2clusters
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Newly diagnosed sufferer...Q: Imitrex forms
Aug 9th, 2016 at 4:06pm
 
Hello, everyone. Last Monday I began getting this intensely painful headaches...the worst pain I've ever encountered...around the same time of the day and "pretty much" every other day. The headache lasted anywhere from an hour and up to 3 hours (only once it lasted that long). The pain was always on the right side of my head around the temple and eye. I would cry from sheer pain and go from rocking back and forth in a ball to pacing back and forth in my room as I couldn't concentrate or sit still.

I just moved from AZ to South Carolina recently but I was finally able to set up an appointment with the family doctor around here. He told me it sounded like "cluster headaches" and prescribed me Imitrex injections in which I was told to inject the moment the pain began. However when I asked if there was anything I could do to prevent them from happening he just told me to come back in a month and if they were still coming more than once a week that we'd talk about possible preventative treatment. Okay...so that sucks.

Turns out I was only given 2 injections and it would cost me $300 more just to get 4 more if these worked and that was supposed to last me a month. That really irritated me as I had 4 of these headaches last week and six are supposed to last a month? I already suffer from anxiety attacks and depression in which I was doing really well with these past six months until the headaches arrived.

Well...a headache came on today at an odd time, as these generally appear around 11:30-12:00 but today it was 2:15 PM. Another oddity (but a blessing) was that I had gone 2 days in a row without one for the first time ever. Again, it's only been a week since these have been happening so it's probably too small of sample size to know a specific pattern just yet. When the headache came on I injected myself and after about 5 minutes it went away so it appears that it does work.

Now here's my question...since I only get 6 injections a month and they cost me over $300 I was considering ordering some from Canada but it appears only the sublingual formulations are available. Does anyone know how these may compare to the injections? Do you just take one the moment you feel the cluster coming on as I'd do with the injection?

And one more question, are there any possible supplements/vitamins/OTC meds that can be used to help prevent future clusters or at least help limit the pain of future attacks? I heard Melatonin can help so I've been taking 10mg at night the last few nights. I've also heard something about vitamin d regimens...any clue what that is?

I don't know just how educated a family doctor is with things like cluster headaches so are there any questions I should be asking him next time I meet? Any help would be greatly appreciated as I would do just about anything to help limit the pain from these headaches.  Cry

Side Note: I'm prescribed Lyrica, Provigil, Trazadone for fibromyalgia. I also take Phenibut to help me sleep through the night without constantly waking. Any of these potentially harmful for these headaches? When the headaches first started I was taking Ibuprofen + Tylenol in the morning but they did nothing but hurt my stomach so I discontinued that.

Sorry for the long read guys...just have so many questions as this is all too new to me.
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Bob Johnson
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Re: Newly diagnosed sufferer...Q: Imitrex forms
Reply #1 - Aug 9th, 2016 at 9:21pm
 
There are many disorders which mimic Cluster but are not headche disorders. At least float this issue with your doc. Best move is to work with a headache specialist.
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Look under: Medications,  Treatments,  Therapies -› Important Topics ->Cluster-LIKE headache
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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.
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This is a effective med to abort Clusters and for some it will totally stop the problem. At leaast print this info and talk to your doc. It has advantages of fast action, inexpensive, and a simple routine. It advantages make it worth trying it for one or two attacks to see the effect for you.
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Print the article, below, to share with your doc as well as to inform you.
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And, read the disclaimer at the bottom of every page.
We are not M.D.s


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Bob Johnson
 
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Re: Newly diagnosed sufferer...Q: Imitrex forms
Reply #2 - Aug 11th, 2016 at 8:52am
 
D2C - My neuro prescribed Zomig nasal sprays for me instead Imitrex.  They are both Triptans and work fairly well as an abortive.  You have to push both your doctor and your insurance company hard to get more than the paltry 4/month doses.  These drugs are used primarily to treat migraines which are far less frequent than CH, and for insurance companies in particular, there is really no history on CH, so they just fall back on their Migraine data.

My experience was that these the medications are far cheaper in both Canada and Europe.  You really need your doctor to go to bat for you on this.  If he/she won't do it, you may need to look for another doctor who has some experience and sympathy for those suffering from CH.  Best of luck.
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