Prednisone forever will put you in an early grave.

You are in the pharmaceutical downward spiral right now, and you must pull yourself out of it. Chances are most of your attacks are of the rebound nature due to cocktail of chemicals you're ingesting.

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Which doc is the primary doc for your Clusters? If not a headache specialist, sounds essential that you get one lined up.

Using this much Suma. can/will induce an increase in attacks. The only fix is to stop using it for a few days, replace with another aortive, and see what happens re. the frequency of attacks.

Low dose Pred which is relatively safe is likely to not have any benefit for Cluster.

When you become desperate you are not in a state of mind to control your own therapy--safely. Why a headache specialist is called for.

We regularly see comments that Sumatriptan changes the experience of CH--increasing frequency and/or intensity. What is usually missing are any data on frequency of this experience, duration of changes, source of the claim, and so on. Several years ago I searched medical literature for some specifics on this experience and could only find the two abstracts (below). In January, 2011 I searched for more current reports and could not find anything in the previous 10-years.

My conclusion is: the absence of later data suggests that there is little experience stimulating reports/study and that this is not an important problem. The last point is reinforced by the observation that in the few reported events, that the changes in headache reversed when Sumatriptan was dropped.

As with other medical topics, it's important that we qualify our "truth" claims with parameters/limits which don't distort real life experience.

It's not much help to people to warn them off using a good treatment with a silent implication that some side effect is widespread, enduring, even dangerous. We are always, with every medical treatment, struggling to balance benefit vs. risk. As we expect our physicians to fairly present the pros & cons of a treatment/procedure to us, we should, given our limited knowledge & skills, try to do the same.
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Headache. 2000 Jan;40(1):41-4.

Alteration in nature of cluster headache during subcutaneous administration of sumatriptan.
Hering-Hanit R.

Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel.

Abstract
OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache in four cases. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine.

BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with sumatriptan in cluster headache are limited and report conflicting findings.

METHODS: FOUR CASES ARE DESCRIBED.

RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. WITHDRAWAL OF THE DRUG REDUCED THE FREQUENCY OF HEADACHES AND ELIMINATED THE NEWLY DEVELOPED TYPE OF HEADACHE.

CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug.

PMID: 10759902 [PubMed -
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Headache. 2004 Jul-Aug;44(7):713-8.

Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.

Headache Centre, INI Grottaferrata, Rome, Italy.

Comment in:

Headache. 2005 Sep;45(8):1089-90.

Abstract
OBJECTIVES: To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature.

BACKGROUND: Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial.

METHODS: Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described.

RESULTS: ALL SIX PATIENTS had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. IN ALL PATIENTS, THE CH RETURNED TO ITS USUAL FREQUENCY WITHIN A FEW DAYS AFTER SQ SUM WAS WITHDRAWN OR REPLACED WITH OTHER DRUGS. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache.

CONCLUSIONS: Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.

PMID: 15209695 [PubMed

Joe, thank you for your message, I have been given a RX for the prednisone now, I hope in a few days this will work, and I hope I didn't wait to long to start it. Bob, I have read all of the info you posted, I just don't think I could not use the imitrex, even if it may be causing more attacks. Nothing else has ever come cose to working for me. I will continue on the verapamil increases & do what the headache doctor says, but I do need things to cool off a bit. I know I may sound a little bit desperate. I guess I am right now. I'm also a bit foggy & not too clear on things, but I do hope everyone knows that I would never warn anyone away from any medicine or treatment that brings relief to them. If It sounded that way about the pred, then I didn't mean it to. I was only meaning pred in the sense of very long term use.  Thanks Gregg, I have found the verap thread and read it all. Seems like I will have quite a few more ekg's coming up. Unless it starts working at a 480 mg dose, which I'll find out as I begin the pred taper (not for a while though). I just want to say that this is such a great site, I have learned a lot reading through various threads, and you all seem like such wonderful people.  I know everyone here understands how sometimes you just reach a point where you don't care anymore, that you will try everything & do anything to just not be in such horrible pain so many times a day. Its our own personal breaking point, and I have reached mine. Thank you for listening & replying to me.

Thank you, lance. Thank you for understanding.

Funny that you mention that. I had an endocrinologist warn me that if I continued using prednisone, there was a good chance I wouldn't be alive 5 years down the road. That was 15 years ago. I've been on it more than off it in my 20 years with this. I took it for 16 months straight about 9 years ago (all through my pregnancy then months to taper down). I did have issues with it, though. I developed gestational diabetes during my pregnancy because of it & osteporosis. Took fosomax for 5 years to reverse that and the diabetes resolved itself after my son was born. What scares me is that I'm 43 years old & from what I have read, doctors will start to get angsty about prescribing meds when you are nearing & over 50. They don't like to give Imitrex or prednisone. I read on one site that they advise their patients to use ice packs and prescribe narcotics as it is safer then imitrex. That is frightening. Its such a hard choice to make. Stockpile like a good squirrel for the day when they won't give it to me anymore? I wish there were some solid answers, like if I knew it would stop at age 60ish or something. Just some day to look forward to. A magic age. But I can't find any info on that. I would like to know if many people on this site have ever tried the gamma knife or radio frequency & if it helped them. I don't get facial pain too much with the HA's, its mostly in my temple & side of head & eye. That makes me wonder if injuring the trigeminal nerve or the occipital nerve would be any use to me. The nerve blocks did nothing for me. I had the ganglion cascade (is that right? Glycerol injected into the ganglion of the trigeminal nerve) & that was a failure as well. It was worth a try though. I will try surgery if I could just know if it has a good chance. My HA's have never switched sides.

I am on the vitamin D3 regimin now. The o2 has never worked for me, though, even at the docs office with a high flow rate. I know everyone will say to try again at home with a different mask, but to be honest, I don't know if I can sit there for 10 minutes waiting to see if it will work. Its just terrifying that it wouldn't work then I have to use extra Imitrex which I don't really have to spare and the face the possibility of not having it work at all. I'm on 60 mg prednisone now & I have dropped from 4 or 5 HA's a day to 1 or 2 a day. That's also something new. Prednisone always completely stopped the HA's after 1 or 2 days, except when I was pregnant. (No Chance of that being the case now!) For now I'm off the indomethacin & waiting for my nuero to read my EKG to up the verapamil to 480 mg (short acting) & up my depakote to 1500mg a day. Also, I'm really reluctant to go the busting route, I've never experienced anything like that before & I am a single mom raising a child with autism. I always have to be in full control. Thats why I've never tried some of the other drugs the docs have offered over the years. I wish I knew why this is so resistant to everything. Ah, its all such a mess right now. I'm going to post on another thread and see what anyone's experience with surgeries have been. Even though I am uninsured, my parents will help me pay for it & I would most likely get a break on the fee's and can make hospital payments on time. I'm willing to try any surgery, even if the odds are only 50% or so.

Ariel,

As late as last Dec. I'd taken as many as 7 Imitrex shots in one day. I hadn't had a headache free day since 2004. I never really considered the rebound effect from all the meds I'd been on. I'd had 100 mg pred to start a regimen and up to 960 mg of Verapamil. Mixed in were too many other meds to list. All the usual.

I came across Batch's D3 regimen. It took about a month to really kick in, primarily when I upped the D3 to 20,000 IUs. Now I'm having an occasional mild headache or two, but have gone as long as two weeks without any. 70% of the folks in the survey are experiencing positive results.

Before you consider surgery please give it a real shot. Also, read about Clusterbusters. There's a link to a separate site.

Best!

Prednisone almost always works for me, but in 15 years there's been a couple of times it didn't. Those were particularly intense bouts that faded after a few weeks. These bastards do tend to ebb and flow. The thought I tried to hold was that when they were at their worst they would HAVE to get "better". Always they did.

I'm certain I weigh more than you do, but I never got relief without starting a pred course at less than 80mg, then a taper. Worth asking your doc?

Best PF days....

I've just got out of a cycle where I needed to use 2 pred tapers to knock the beast down, and even then I didn't totally clear up until I started the D3/massive water regimen. Still, I can't honestly imagine how you are dealing with this- I felt like I was at my wits end after 3 months of 2 hits a day.

Seriously, this is your life. Forget about what is "legal" and find something that works, no matter what it is. I've already told my wife that if nothing legal works, then we're going down another route. I hope you find some relief soon.