Hi,
     I've had headaches for about 4 years. I'm blessed with both migraine and clusterheadaches. My cycles of clusters seem to last about 2 1/2 to 3 months, then stop for about 6 to 8 months then begin again. Every now and then, I get a migraine in there...I can deal with those. Currently, I'm in a cycle that began in March and has not stopped (sept).
     My MD first started me on imitrex tabs that seemed to work initially. I took those for over three years and dealt with the headaches building up and then having the imitrex trying to beat it back down again; pretty ineffective. Plus, the tabs were making me very nauseaus and sleepy afterward. The MD then had me try the injections of imitrex. Didn't touch my headache. He was very suprised, because he sais "75% of people ususally get good relief." Well, then he tried me with topiramate tabs. What a nightmare those are. Began at 25 and upped to 75MG. Began having random, whole body twitches (not tremors). Couldn't concentrate, began having word finding difficulties and speaking difficulties (felt like an idiot; didn't want to talk anymore). Then I also began having hallucinations; nice. Also felt totally exhausted at the end of the day. Would come home and lay on the couch and ask my daughter if she would make her own dinner. Nice mother. And the nausea was awful. All I could eat was popsicles. They've had me back down to 50 mg, and the hallucinations have stopped, twitching and decreased in frequency and intensity. The nausea and fatigue and nausea seem to be resolving, but sometimes I feel really bad. Headaches?? Well, when I was at 75 mg the headaches stopped, but I felt so bad that I barely noticed. Now that that I'm at 50 mg, the headaches are returning again. I basically had to talk them into letting me try O2. But they insisted that it meant I was to have an O2 concentrator and a mask (but not a rebreather). The liters per minute only went up to 10. So, needless to say, the O2, delivered in that manner, didn't work for me.
     My headaches have never been as severe as where I would be banging my head on anything. But bad enough. And the duration of headaches confuses my MD. He says it sounds like cluster, and I believe it is cluster. But the duration of the headaches is different. My headaches can last for minutes, hours or all day. And I can get up to 6 or more a day.
     I'd appreciate any ideas. Thanks alot!
     Weenie

My want to try indomethacine just to be sure -

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You need to make sure you ARE indeed suffering from clusters. Have you taken the Cluster Quiz? 

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I say the above because I believe there are quite a few doctors whose knowledge of clusters is not as good as it should be (why would it be with such an uncommon condition) and  you could have been misdiagnosed.

The problem with clusters is that we all react to different treatments; what works for me, might not work for you.

Get your doctor to visit this site and IMMERSE himself/herself in it. Also, print off the oxygen info and present that to your doctor -  this site is the world's greatest repository of information on cluster headaches - he/she MUST respect that.

I have a drug treatment regime that works 9/10 times for me involving Verapamil, Ibuprofen and Oxygen. I don't want to give specific details regarding actual amounts of Verapamil as I'm a big guy and what works for me might kill someone else, but in essence I RELIGIOUSLY take Verapamil and Ibuprofen (682Mg) and precise, regular intervals, regardless of whether I have a headache at the time. I find that such a regimen can kill a bout within 3/4 days.  If I relax the meds too early, though, the headaches come back with a mighty vengeance!!!  I use the O2 during a headache. Tell your doc that 02 at less than 12 litres/minute is pointless.  Frankly, I want sometimes to use 2 bottles simultaneously so I can get 30 litres/minute, but that's just the madness in me when I have a headache. It would simply waste 02.

Oh, and Red Bull or similar, drunk as fast as possible in the first minute or so of a headache can knock it down...

Hey Weenie, that's a hella load of crappola you've been handed to deal with, sorry to hear about that.

Assuming your diagnosis remains cluster headache (one thing that perplexes me is the ineffectiveness of imitrex injections, that is surprising), I think if I were you I would get a new doctor who will at least prescribe O2 in a tank (you can  take it from there regarding mask and liter flow), or look into getting O2 from a welding supply place and just bypassing the doctor who is doing you more harm than good in the O2 dept.

For preventative, well I apologize to others on this board (you can skip past this) for bringing up Neurontin again, since I've mentioned it in a few other posts just recently, but some of us including myself respond to it well. Some don't. It's not exactly one of the first meds usually tried though.

FWIW, I've had a high intensity CH go on for a good 4 hours before, but not all day.

It's a NON-REBREATHER mask we use. There is the non-rebreather with the bag, the rebreather (without a bag), and the nasal canula. All 3 are different.

The rebreather and nasal canula are NOT good for aborting CH. They are only slightly better than nothing. For the best results we must get 100% O2 with NO outside air.

The problem with concentrators is they don't put out 100% O2. Tanks do. Please read the "oxygen info" on the left of this screen or if you can't see it go to "treatments medications & therapies", and read the oxygen post near the top of the page.

To get better use from a rebreather (no bag) mask or the nasal canula:

Rebreather; remove the strap, tape the vent holes on the sides shut, lift mask fro the face to exhale.

Nasal canula; cut the end off and close the mouth around the hose, breathe only the O2 thru the mouth.

Good luck, Don

You should read a post made by Batch a while back.

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It might help you.

I am amazed that you had such a severe reaction to topamax on such a low dose.  My dr had me try 600mg.   No such luck helping ch though.  You may want to try verapamil up to 960mg and/or lithium up to 900mg.  Many on the board swear by these meds to help the ch.  I had great luck for two years with the lithium until it quit working for me.  There are other abortives out there similar to imitrex that may help you.  LIke Zomig, Maxalt, Axert, Frova, Amerge, etc.  The zomig comes in a nasal spray as dose imitrex.  It aborts my ch in 6-10 min.  I found maxalt made my ch more intense.  The rest all worked wonders to abort my ch.  THey are all slightly different meds and may work for you were the imitrex failed.  Also there is the older meds of cafergot, irgotamine, dhe, migranol, etc.  I hope you find some relief in one of these meds I have sugested.

Hi Weeniee,

I've been an episodic sufferer for 18 years now and have tried different kinds of treatments such as Imitrex, Zomag, propropanol, anti-depressives, prednisone, etc.  They seem to work initially however the clusters seem to come back with a vengeance.  The latest drug I have tried is basically self prescribed...let me explain:  I had gallbladder surgery last year, docs prescribed Supeudol for pain...had some pills left over, kept them in medicine cabinet.  Last month, clusters come back, husband panics and decides to give me the Supeudol (1 tab @ 4mg)  Within less than 5 minutes, the pain was gone...I have been using them ever since and I have been able to sleep my nights.  This pain medication works wonders...They will not stop the clusters from coming however the pills stop the pain almost instantly. 

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tammy.vespo,

I'm not trying to burst your bubble here, but the it's clear that opiates = disaster, addiction and offer
NO help in the long run while having clusters.

Obviously you must speak to your doc about opiods however being an episodic sufferer, habit forming of the drug is not relevant.  There can be a "physical dependence" but not addiction.  For info, look up Supeudol

I think the point they're trying to make is that opiods take 30-45 minutes before they start working. Could it be that your individual headaches are short-lived and are, in fact, waning on their own?

The only drugs that I've heard of working "almost immediately," other than oxygen, are olanzapine (oral) and sumatriptan (subcutaneous injection).

tammy.vespo wrote on Sep 24^th, 2009 at 3:24pm:

Obviously you must speak to your doc about opiods however being an episodic sufferer, habit forming of the drug is not relevant.  There can be a "physical dependence" but not addiction.  For info, look up Supeudol

It's not worth talking.  You'll probably get pain relief, but you're setting yourself up for disaster.

You might want to check with another neuro who knows what they're talking about.

Hi Chad,

Don't worry about bursting my bubble!!!!  I spoke to my doctor about it and he reassured me that if it works, short term, not a problem...obviously, as I previously stated, it does not stop the cluster from happening however stopping the agonizing pain within 5 minutes and making me functional the next day is quite the progress.  4 mg is a very low dose

Tammy,

I'm surprised he/she didn't prescribe a triptan or oxygen therapy as your first line abortives.  I would question a doc
who goes right to the opiates.  That's just my thoughts.  You do whatever works for you.

Best of luck and I wish you pain free days :)

Cheers,
Chad

I sure hope you find your magic bullet soon!  Aborts are nice, but preventatives would be nicer.

Glad to hear you're managing.... Praying for the beast to leave you and for many PFDAN.