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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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Your first long term use of Pred. reflects a doc who knew nothing about treating Cluster.

Rather than attempting to comment on your entire history, we recommend--if at all possible--working with a headache specialist. (Even many neurologists lack good education in headache, so ask anyone you may coinsider seeing about their trainging & experience--but specialist as first choice.)
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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 or 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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The number of effective treatments have increased many times over in the last 20-30 years. Really time to start from scratch, as if you were a new case--getting a fresh pair of eyes to look at you/your history.

Start to educate yourself via buttons, left, beginning with the OUCH site--then next article and the PDF file, below.----




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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]
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The PDF article will give you a "catalog" of current therapies, an evaluation of effectiveness, and education for you.

I felt the same way this evening. Didn't want to talk to my kids(they're much older than yours) or call a friend, but I made myself! I had an hour crying jag and it did help! Give it a try or complain to me. I too need someone who gets it.

I just found the boards last week and I'm still trying to learn them. I've just added you to my "buddy list" and I'll be on a lot if you need to talk. Hang in there and I will too.

I will do that. My appt is for next Wednesday. For now I am taking the short acting verapamil, 80 mg, 4 times a day, and 50 mg topomax 2x a day. That has been reduced from 200 mg a day because I could barely remember my own name.

I would like to tell people about the Norvasc. It was 10 mg, once daily & it did seem to work. My regular doctor put me on it. He said it was more for people with chronic migraines. That they had found people who were taking it for blood pressure were getting some relief. The medicine is very inexpensive. I had no side effects, but my doctor warned me of a common side effect of hand or feet swelling. When I started getting "shadows" I asked him to increase it, he was reluctant, but then he said I could take 5mg more at night. It seemed to do the trick. For a while, anyway. I was also taking 1000mg a day of depakote at the time. Like I said earlier, something happened, I don't know what. But after that, it never worked again for me.

Oh, and guess what? He already knows about the message boards, because last month when I saw him I was still on the prednisone. When he asked me who was monitoring me, I said I was doing it myself & that I had a lot of it at home (he knows I'm a long time prednisone user) so he jokingly asked me where I got my medical licence, and I jokingly answered back "The internet" which sort of led into a quick convo about the message boards.

Um, also, if I ever say anything that seems useful to anyone  & I put it in the wrong place, please feel free to just tell other people. Thanks.

Thanks for adding me. I'll do the same. I'm really glad I decided to join up here!

Quote:


Hospital O2 did nothing for me, either. It is the wrong mask, too low a flow, and I did not use good technique. On the other hand, after following every bit of advice here, I now use O2 with a nonrebreather mask, at 25+lpm, coupled with an energy drink, to abort just about every hit. And I get hit 2-6 times per day and night. I mention this because so many have said O2 didn't work, but it means they didn't use it as described here. It may be worth revisiting with an eye to improving its usefulness. Blessings. lance

Thank you Batch for your reply. I will definitely be asking my doctor about the vitamin D3 therapy!

5 minutes?!! That's wonderful. There have been times when I have just been laying down for a few minutes, felt that shadow coming & immediately got up & busied myself doing something. Its has sometimes (only sometimes) worked. But, laying back down would bring the headache right on. I wonder why that is? I guess what I'm trying to get at is, if you use the 02 & stop the CH, when you lay back down to go to sleep, has it ever come back an hour later, or have you been good for a few hours? Thank you for your reply.

I remember how wonderful it was for me the very first time I gave myself a shot of imitrex. It was such an unbelievable feeling of relief to have that pain stop so quickly. So I know how you must have felt. It's a little scary thinking about trying something different to stop a CH when I already have something I know works. But, I'm sure O2 is healthier & cheaper. And, as I said, I am running out of the Imitrex vials. I've decided to tell him I will try it again...I will write down the flow rate that seems to work for people to show the specialist, and about the nonrebreather mask. If it works, even for just the daytime ones, it will be a lifesaver. Sometimes I take half of a sumatriptan tablet before bed, and then I am able to get away with using only one half of a shot of imitrex for a very early (6am ish) CH. The generic sumatriptan tabs (100mg) are inexpensive & have helped me avoid that 1st CH shortly after falling asleep sometimes. The reason I only take half is it saves money but mostly because its not taking too much in case I still get hit right away & need half a shot. Thank you for your help every one. I will let you all know what he says on wednesday.   

I too am a single Mother, and have been down just this same path as you. 

I, however, opted to save my job and my sanity with a different method of treatment.  You can read about it here:

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

There is a message board just like this one to get support and information at:

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

I will preface this with the bald fact that this is NOT a treatment method for the meek or the timid.  But when, like you, 20+ years of chronic pain, added to firm diagnosis, single Mom, no insurance and children to raise, sometimes one gets brave and takes a chance.  This treatment had allowed me to have a real life again. 

You can reach me over at the other message board by the same nic name.  or Private message me here for my best email address. 

I've been there.  I've been 1 paycheck away from being homeless due to Clusters.  I'll help in any way I can.

Pegg