Is there a Preventive Medication left that I have not tried?

19 Nov, 2012 - 12:07 pm

Hi to all,
I am desperate for some preventive relief.
Had a gutful of Imigran, can't feel my toes anymore, poor circulation.

Anyone, please throw out some names of preventives and I will see if I have trialled them before. I am looking for one that got away or was missed.
Chances are, after 70 different medications there isn't much left for me.
But you never know.

Any new preventives out there?

Please help!

Cheers, Ben.

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19 Nov, 2012 - 3:47 pm

I'll admit that I haven't tried many medications since I got a bit lucky with the verapamil/oxygen combo. I'll throw in some rather odd sounding treatments that I've heard about but not tried.

I noticed that you're not an oxygen user. Is there any reason for that? I was skeptical of its effectiveness as an abortive but after trying it once, I was converted.

I heard on the US boards that vitamin D therapy was quite helpful for many, and another CH sufferer could prevent headaches by drinking a glass of water every 30 minutes. They appear to be relatively safe treatments (if a bit bothersome) that are worth looking into if you haven't already checked them out.

D3 therapy
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=129196941
6

Water X 3
http://www.clusterheadaches.com/water.html

Also, it appears that clusterbusters.com are on to something... but it involves medications that are more commonly considered "recreational drugs". I'll admit that I haven't researched it at all due to its controversial nature.

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19 Nov, 2012 - 8:00 pm

Thanks James,

I trialled O2 in hospital Pain Management Unit with one of the world's leading CH researchers holding a mask on my head. We triggered attacks using Nitrates found in wine. We used the wall outlet, which was 99% pure, leaving me with 1% doubt over efficacy... The O2 was not successful, but I have been reconsidering trying a cylinder here at home. I can get an O2 script pretty easy and there is a BOC near me who are CH aware. The initial setup cost of home O2, coupled with my past lack of success has put me off so far. I also hear that I may need a concentrator and some other plumbing.
All a bit expensive for a Disability Pensioner, especially if it does nothing, like it did in hospital. I am undecided, but I am sure CH will make my mind up on this for me very soon.

Pete "Batch" Bachelor's Vitamin D regimen is now legendary in CH circles.
I have had record remission length (10 months) this year, simply by taking 4000iU of vitamin D3 in the AM and PM. I am still taking VitD for all the other health benefits, I also suspect my severity is reduced on VitD, but it may just be coincidence.
I would still recommend VitD tests and 4-8000iU per day for any CHer. No Doctor has said to me that it is a bad thing... Hopefully, my specialist Pr Rolan and Batch have a paper on D3 to submit to a medical journal shortly. Last I heard, they had their heads together on this and a paper was to be submitted. In the meantime, I have encouraged all patients and treating GPs/specialists to undertake Vitamin D pathology at first presentation.

If I drank water every 30 minutes, I would drown!
I drink 2L-4L per day, any more and I just top feed the system with water oversupply...
Hydration is real important, I know this much.

The other stuff going on Clusterbusters is the "Busting" method.
I have not tried this and am not about to, my mushy days are a long way behind me.
Never really liked their effects anyway, not enjoyable.
I doubt my ticker would cope these days.

I have had the ergot alkaloids - Lingraine (remember that anyone???)
Ergotamine, DHE, Cafergot, Methysergide (Deseril).
I have also tried LSD and Psilocybin (Magic) Mushrooms.
Lingraine was banned, back in the 80s.
Deseril was 4 years of hell, with no breaks in medication - it nearly grenaded my liver.
Deseril should be banned, there is a shift away from it, thankfully.
Ergotamine and Cafergot made me very sick and did not work on CH.
DHE nasal spray was ineffective.
LSD was purely recreational, back in early 90s, it did nothing good or bad for CH, nothing noticeable anyway.

Thanks for your ideas James!

Keep 'em coming

Cheers, Ben.

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20 Nov, 2012 - 3:00 am

g'day Ben,

currently green, in recent years the prophylactics have not been working.

for awhile verapamil worked really well but not any more.
the beast seems to adapt. might be worth trying something that worked in the past that you have not used for some time.

have tried steroids in the past, they didn't work at all.

neuro has suggested next time try combination of steroids and lithium.

not keen on idea given side effects.

as you are aware, results of studies vary tremendouly,

have read recent studies that say lithium is either very effective or no better than placebo.

same for melatonin.

some research claims that melatonin (at about 10mg per day) will bring about remmission in 3 to 5 days in 50% of cases.

i recently lassed out and paid for access to a medifocus web site called CH guide book.

i have no interest in and am not promoting this (last thing we need is people trying to profit off our pain) just saying i found it usefull, was last updated 24 may 2012.

i know you have tried oxygen without success, have read accounts where very high flow rates (25 lpm) have worked where the "normal" flow rates have not worked.

all the best, kim

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20 Nov, 2012 - 7:54 am

Hi Kim,
Good to hear from you mate.

Verapamil reduced my heartbeat to a squelchy, inconsistent rhythm in no time.
I started on 120mg, up to 240mg (recommended dose for heart conditions) then progressed to "off-label" or "experimental" dosages of 360mg.
I ground to a halt at 360mg. We were seeking efficacy in CH that may have taken 960mg to knock out CH, so it was not tolerated. I never had a single ECG from the Neuros who put me on Verapamil. My heart has never been the same since, I now take an anti-arrhythmic called Atenolol to keep my heart ticking at the right rate. I trialled a cousin of verapamil called Diltiazem. Much like Verapamil, I was left with a permanent 8/10 Migraine until I ceased the drug. I can't do those again!

Lithium carbonate is one of the worst drugs I have trialled.
I trialled it once under Neuros, with little supervision and no success.
I was worse off for having used it. Just to be sure, again several years later, I re-trialled Lithium with Pr Rolan. It was ineffective.
As a drug used in mental health conditions, I did read a study that said patients who used Lithium short-term (3 months or less) came off the drug mentally worse off for having taken it. Longer term users seem to use the drug for life and report success in managing their mental health conditions. The study showed that Lithium should be approached with caution. Sometimes we end up worse off, just for having tried a drug.
Some drugs open up doors in my head that do not necessarily close.
I wish I had never had Lithium, but I had to give it a go.
Nasty side-effect profile, indeed.

Steroids, or Cortisone are off my menu. They cause recurrence of shingles, then I have to take a course of Aciclovir. I also had an apthuous ulcer in my terminal ileum removed after the last round of Cortisone. Most frustratingly, after 4-8 weeks of corticosteroid use, I am back at square one for CH, with a hammered immune system.
Cortisone hardly seems worth taking anymore. I am 20kg heavier than I should be, courtesy pred.

I tried a Melotonergic antidepressant called Agomelatin or "valdoxan".
No success in CH, but I had great sleep.
I see homeopathic varieties of melotnin for sale everywhere, but I don't know where to get hold of prescription strength (FDA/PBS approved) Melotonin.

If O2 is cost prohibitive for me, I suspect the gear to supply high-flow 25l/min will cost a fortune, I am unsure. It would be nice to try before committing money I don't have to a treatment that may not work. My hospital trial does not fill me with confidence that O2 will work. I don't see a re-trial on offer either. Pain unit have "scraped the barrel" for ideas, I think they are finished with me after 6 years of investigation.

So, the hunt continues!

Thanks Kim.

Keep 'em coming folks!
I am not trying to be dismissive of any ideas here, I am just stuck between a rock and a hard place for relief. I have tapped out the specialists for ideas, so i thought I would ask those in the know - CHers themselves.

Cheers, Ben.This post was edited on 20/11/2012 at 7:58 am

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20 Nov, 2012 - 4:19 pm

Okay, this probably isn't going to help but might give you some things to check off your list.

I was once treated by a crazy neurologist who gave me all these medications AT ONCE:

Lithium (well known to CH sufferers)
Gabapentin / Neurontin ( epilepsy / neuropathic pain drug)
Topiramate (antiepilepsy drug)
Amitriptyline (tricyclic antidepressant)
Atenolol (beta blocker)
Dexamethasone (steroid)
Tramadol (analgesic)
Indometacin (non-steroidal anti-inflammatory drug)
+ probably others I've forgotten

As I was taking them all at once, I can't really say what did what. But this much I know:
- The cluster headaches did not stop.
- I was doped out 24 hours a day, unable to work.
- I was VERY suicidal (probably from the Gabapentin).
- The neuro obviously had no idea what he was doing, except raking in huge profits from selling medication. In the western world, he probably would have been sued.

After 3 weeks of treatment, I just quit all the medications cold turkey (which could have been dangerous, but probably less so than suicide attempts) and stuck to just sumatriptan to ride out the cycle.

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21 Nov, 2012 - 7:44 am

James,
This also goes on here, I don't know how Neuros expect to establish drug efficacy when they use so many drugs at once. This is a big issue with Medical Journals and ONS manufacturers reporting relief from ONS, when about 70% of ONS recipients are still taking preventives, often many at once!
What a crock!
ONS studies still claim efficacy, even when their patients are on lists of meds like this one. This is a major gripe of mine, especially as I am "suffering" and I knocked back ONS.

That drug combination is ridiculous, if not unbelievable, there are drug interactions everywhere. (I believe you James, seen this before)
I am surprised you survived it, or that you were at all conscious.
I have done trials of all the drugs you mentioned, except dexamethasone, we used Prednisolone instead.

It was not until I came across Pr Rolan, a Professor of clinical Pharmacology and Headache expert, that my drugs were expertly trialled one at a time, with extreme caution

In a 1 man trial I would do this:
- Have steady CH in a bout (4-6 attacks per day)
- introduce a new drug to my system
- report initial problems, contraindications, side-effects
- if tolerable, continue to take the drug, if not, cease the drug
- assess drug efficacy on CH after an arbitrary period of a few weeks to around 3 months
- if no CH relief, have a washout period of about 2 weeks, ready to start another new drug, if any CH relief, withdraw the drug and see if CH returns
- when CH returns, re-introduce the drug to rule out spontaneous remission and establish the drug's efficacy.

Lithium - 2 long trials dropped my BP, pathology tests were not good - not tolerated.

Gabapentin - went absolutely crazy, mania, mania, mania - never again.

Topiramate- took it for 10 months, had a toxicity issue, went into atrial fibrillation and nearly died - my first ride in an ambulance. another 10 months to recover. Also made me depressed, anxious, suicidal, paranoid, I would have been shaking like a chihuahua, had it not been an anticonvulsant. (it did stop my CH, only drug ever to do so)

Amitriptyline - On it now 20mg PM dose. Neuros gave me 250mg, not tolerated.

Atenolol - On it now, 25mg AM and PM for heart arrhythmia caused by the Topamax incident.

Dexamethasone - never tried it, never will, Cortisone side-effects have flattened me with shingles and stomach ulcer issues.

Tramadol - tried it, it is a shitty painkiller, weak as, ineffective (also contraindicated with Amitriptyline) Why anyone would prescribe this in CH is beyond me.

Indomethacin - 3 month trial (with a Neuro). This drug is like "The China Syndrome", it will burn a hole in your gut, through the floor and into the centre of the earth. Indocid responsive headaches are generally not CH anyway. This drug was ineffective.

Thanks James, but it's another case of "been there, done that".
I don't want to trail any of these again, my trials were rigorous and not need be repeated. So its back to the drawing board for me.

Bring on the Ditans, I say!

Cheers, Ben.This post was edited on 21/11/2012 at 7:46 am

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30 Nov, 2012 - 6:42 pm

Thanks to all for reading and offering input.
Much appreciated, I know it is hard to offer answers to someone who has swallowed an entire Pharmacy in the search for relief.

I ramped up the vitamin D3 from 4-5000iU back to the full 10,000iU per day.
In an attempt to "replicate" Batch's regimen, I am taking vitamin D with a meal, taking Centrum multivitamin (CSIRO researched) and using Salvital instead of real lemonade a couple of times per day. I don't think they have Salvital in the US.

I notice Salvital lists the following ingredients:

Mineral salt 500: http://en.wikipedia.org/wiki/Sodium_carbonate
Food acid 296: http://en.wikipedia.org/wiki/Malic_acid
Food acid 334: http://en.wikipedia.org/wiki/Tartaric_acid
Mineral Salt 518: http://en.wikipedia.org/wiki/Magnesium_sulfate
Sugar, Lemon flavour.

Food addititive list: http://en.wikipedia.org/wiki/List_of_food_additives,_Codex_Alimentarius

Being an old Bickford's recipe, I am inclined to trust it more than similar products (ENO, Alka Seltzer, whatever...) From what I can work out, one or more of these ingredients MAY alter arterial pH (or even buffer systemic pH) and lessen my chances of Vasodilation and theoretically, the subsequent trigeminal activation and CH attack. It is complicated stuff to research, a bit beyond me. I need a chemistry degree to understand the literature.

Some of these ingredients get a good rave on (RLS) Restless Leg Syndrome studies and forums. Buggered if I know why, but it seems to be doing the trick, have not required Imigran for a while now. Still have constant interictal headache, managed with Panadeine Forte, but its far better than CH. My constant shakes down my left side seem to have left me too, albeit temporarily. Too superstitious to go to green yet.

Thanks again for the input.
Maybe someone else in a bout can try the VitD3, centrum and Salvital and see if it works for them?

Cheers, Ben.

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30 Nov, 2012 - 7:29 pm

Hi Ben
I've been using a similar routine for a year or so now - I use ural as an alkaliser, rather than salvital and add magnesium. Certainly hasn't "cured" me but things have been one hell of a lot more manageable.
Good luck ..

Sara

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01 Feb, 2015 - 5:56 pm

Hi Ben

Only thing I can offer into this is Di-gesic as a pain control option, I had success with it a few years ago when it was called capadex and then it was placed in a banned list,

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04 Feb, 2015 - 11:27 pm

Scratch the Di-gesic
All it's done is hold it off for 4 hours the first few times, after 5/6 hits relief lasts a hour, not only that but when it comes back it's a total bitch, I didn't think the Ch pain could get worse, but this is a whole new level.
Could be my age has made it worse, but used to work fantastic.

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