MoxieGirl Posted May 24, 2015 Share Posted May 24, 2015 I have, what may seem, a silly question, but I hope to do something kinda cool with the answers. Would you mind listing all the things you've tried over the years to stop clusters regardless if it worked or not? If someone else has listed it, you don't need to list it again, I appreciate there will be several things on the list we've all tried. I'll start: Verapamil Topirmate (Topomax) Water, water and more water Zomiltriptan Indomethacin Hot cloths Cold cloths Meditation Stress management Vitamin D3 Thanks MG Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 24, 2015 Share Posted May 24, 2015 gabapentin kudzu (I assume you're not asking about busting agents.) Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted May 24, 2015 Author Share Posted May 24, 2015 Nah, I think I'll leave busting agents out of this list, for now. Quote Link to comment Share on other sites More sharing options...
spiny Posted May 24, 2015 Share Posted May 24, 2015 Carbamazepine Elavil Lithium Prozac Lyrica D3 Screaming hot bath with cold pack on head GABA Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 24, 2015 Share Posted May 24, 2015 I see much of what I've tried has been mentioned, so I'll just list things from my past cocktails, etc. that I don't already see listed at first glance. OK here's what I'm remembering right off the top of my clusterhead: prednisone sumatriptan sansert (methysergide) ergotamine midrin capsaicin (Zostrix) in nostril O2 chiropractic acupuncture intravenous magnesium sulfate Naproxen wisdom teeth removal deep breathing of freezing air vigorous exercise the Jeebs Jibulator energy drinks Quote Link to comment Share on other sites More sharing options...
spiny Posted May 24, 2015 Share Posted May 24, 2015 Jeez, I forgot Pred and O2!!!!! ;D Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted May 25, 2015 Author Share Posted May 25, 2015 The Jeebs Jibulator - now that's a new one that might require some explaining. Sounds interesting. I'll let you into why I've asked for this information. CHFather recently posted some very cool - honest - greeting cards aimed for people with cancer. I like those cards a lot, and they got me thinking. What if we had a card we could give to people when they find out we have CH and are stirred with that desire to help by suggesting we try this and that. The most recent suggestions I've received are for meditation and healing crystals. I'm running with the theory that if something doesn't work for most people with CH, it simply doesn't work on CH. I haven't tried acupuncture, and I don't intend to because I know several other CHers who have and it didn't help. So I figure the odds are very slim it'll work for me. I'm picturing a greeting card with a brief description of what CH is, a list of all the things that have been tried to cure it and then some helpful tips on what the receiver of the card can do that will actually help. These basically being to be understanding, appreciate that CH can frequently interrupt any plans we had together and to not take it personally, and if you're ever with me when I have an attack, bring me water. That sort of thing. The card is really a 'stop talking and get me a glass of water card', but said more politely. MG Quote Link to comment Share on other sites More sharing options...
Ajax Posted May 26, 2015 Share Posted May 26, 2015 Reading this post is a walk down memory lane. 15 years trying all of Boston's neurologists(Until I found Mcgeeney). I will add: 1) Reiki 2) 4 vicodin /4 valium - Praying to pass out... In the end the valium became critical to the massive doses of Prednisone and my ability to not attack people while jacked up on it. 3) Head in snow bank 4) Close call with hammer to the front of the head... Having people talk while I am having a CH is not an option. If this is happening you need this card immediately and it needs to be short and sweet! Shut up, get me water, and make it dark PLEASE! the only water I drank with a CH was to wolf down pills that had zero effect. Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 27, 2015 Share Posted May 27, 2015 Nice idea, MG. Some others ones that some people have tried (sorry for any duplications): ketamine (Ajax reminded me of this one) sphenopalatine ganglion ablation sphenopalatine nerve stimulation microvascular decompression surgery botox injections deep brain stimulation sinus surgery TMJ treatments occipital nerve block hyperbaric oxygen trigeminal rhizotomy baclofen methadone nitrous oxide octreotide DHE (dihydroergotamine) clonidine sodium oxybate sex sodium valproate dietary therapies massage (Jeebs already listed chiropractic) TENS stimulation a whole bunch of topical creams and gadgets a whole bunch of OTC pain medicines (Goody's is the one I always remember, but Excedrin migraine, etc., too) I don't think anyone has listed energy drinks Depressing as hell, isn't it? Quote Link to comment Share on other sites More sharing options...
rufftime Posted May 27, 2015 Share Posted May 27, 2015 Lots & Lots of Prayers.. Quote Link to comment Share on other sites More sharing options...
razorPP Posted May 27, 2015 Share Posted May 27, 2015 Coffee My dog pressed against me I agree depressing as hell Quote Link to comment Share on other sites More sharing options...
Ricardo Posted May 28, 2015 Share Posted May 28, 2015 Hmmm.... Truthfully all the busting agents that I have used have also at times been helpful for aborting a headache so I'll list them. I put stars next to anything that seemed completely useless. LSD Psilocybin DMT Virola theiodora resin Tetrahydroharmine Harmine Harmaline Diplopterys cabrerana Salvia Divinorum* Mimosa Hostilis root bark* N-Acetyl Cysteine Ketamine Adderall* Testosterone* MDMA Nitrous Oxide Oxygen* Rivea Corymbosa seeds Morning Glory seeds Opium Datura Hash oil hashish Cannabis Wild Dagga* Carisoprodal Tramadol Indomethacin* Vicodin Vicoprofen Morphine I.V. Diphenhydramine Dilaudid Toradol* I.V. Magnesium Guarana Coffee Barbituates* High dose ginger I'm sure there is more that I am not remembering... -Ricardo Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted May 28, 2015 Share Posted May 28, 2015 Looks like Ricardo wins.. Hmm wait a minute, you've never tried Verapamil... ok got one on ya.. J Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted May 29, 2015 Author Share Posted May 29, 2015 Awesome list guys! And wow, some of you need a really big hug for surviving this far. I'll start on my project next week. MG Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted May 31, 2015 Share Posted May 31, 2015 Radiofrequency ablation, in case no one has mentioned it... Let's set fire to them nerves. Stadol Seroquel 500 other things I can't remember right now. Quote Link to comment Share on other sites More sharing options...
spiny Posted May 31, 2015 Share Posted May 31, 2015 This list has reminded me of many things that I have tried and forgotten about over the years! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 1, 2015 Share Posted June 1, 2015 Yeah me too, like Pxie-Elf's Stadol. That was one epic fail for me in the pharmaceutical abortives dept. Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted June 3, 2015 Share Posted June 3, 2015 I lost the list and lost count of all the drugs..prescription that is. I include 02 in that list. chiropractor( gave it to me free as he vowed it could cure me. However as bad as my headaches were. My back felt great) Acupuncture Nerve Blocks Freezing in back of head. Red Bull (puke), Coffee, high caffeine drinks. Aleve 2 gel capsules per attack. There is more but I have forgot so much over the years. Brain Surgery #1 Occipital Nerve Stimulation #2 Deep Brain Stimulation #3 infection-DBS Removed #4 re installation of DBS At this point, all efforts had failed. had tried ever known medication available to me here. Nothing worked. I was suicidal for 2nd time...But in a much better head space 2nd time around.... Then I "Busted"..... Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted June 5, 2015 Author Share Posted June 5, 2015 CHFather, what are TMJ Treatments? Quote Link to comment Share on other sites More sharing options...
MDR Posted June 5, 2015 Share Posted June 5, 2015 If I"m not mistaken it is Temporomandibular joint dysfunction Pain and compromised movement of the jaw joint and the surrounding muscles. Mark. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 5, 2015 Share Posted June 5, 2015 CHFather, what are TMJ Treatments? Mark is right about what TMJ is. Not uncommon as a misdiagnosis. Treatments include bite guards, physical therapy, various kinds of site injections, and even surgeries. (This reminds me of another category of things that might not have been listed yet in response to your original question. I don't have the energy to go back and look. Dietary things: special diets (e.g. vegan, gluten-free) and of course drinking huge amounts of water. Also, quitting smoking, quitting cannabis, trying cannabis . . .) Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted June 5, 2015 Author Share Posted June 5, 2015 Thanks for the info. And good ones CHfather, will add them to the list. It's starting to look pretty good. Quote Link to comment Share on other sites More sharing options...
1 Last Song Posted June 7, 2015 Share Posted June 7, 2015 This is a partial list of the medications I have taken (since there is no way to remember them all) and the results *Imitrex injections – Very effective at 4mg ( 6mg is too much ) I use an average of 3-8 injections per day Imitrex pills – Not effective Imitrex NS – Not effective Frova – Not effective Maxalt – Not effective High-flow O2 – Never did work before until recently. May stop some attacks if applied quickly at 10-15 lpm or higher. Will not help for those attacks which wake me from sleep. Only worked approx twice out of dozen tries. *DHE injections – Very effective ( temporarily; 24 hrs +/- ) *Solu Medrol 125mg +/ – Very effective ( temporarily; 24 – 48 hours ) Prednisone – Very effective at large doses ( 60, 80, 100 mg per day to start ) but with hefty side effects Medrol Dose Pak – Very effective but also with hefty side effects *Histamine infusions – Was very effective and still is the best thing I’ve tried to stop and prevent attacks. Rarely fails and most of the time it prevents attacks or keeps them manageable ( 1 attack per day and less intense attacks) for 3 weeks to 10 weeks. Helped for almost a year July 2009- July 2010 had very manageable attacks and was able to stay out of the hospitals for the most part. It was the best I have done in over a decade. Lithium – Not effective ( I tried this several times, for an extended period of time, at doses up to 1050mg a day .. not sure why I say that dose cause I have 1200 mg in y head now) ) Verapamil – Not effective ( I could not tolerate large doses. 400mg a day proved to be too much causing dangerous decrease in heart rate. Heart rate dropped into the lower 20's ) Keppra – Intolerable side effects included severe nightmares. SPECTACULAR SIDE EFFECT CAUSING REAL PHOTOGRAPHIC MEMORY !! INCREDIBLE ! Wish I could've stayed on it even if it didn't help w/ the clusters !! Topomax – Intolerable side effects included kidney stones twice; the first time requiring surgery. Neurontin – Not effective Lyrica – Not successful. Bad side effects Lamictal – Not effective Clomid – Not effective Cell Cept – Not effective Indomethacin – Not effective Nimotop (BIGGEST PILL I EVER SAW) – Not effective Doxepin – Not effective Thorazine – Not effective; Intolerable side effects w/ large dose – SEVERE reaction; hallucinations, paranoia, psychosis (?) Depakote & Depacon– Not effective ( I tried this for an extended period w/ Topomax. Dosage up to 1750mg a day) Decadron & DexaPacks– Not effective + “ Mushrooms “ – Not effective for long at all. I did not follow thru with the 'protocol' which included a 2nd dose 5 days after the first dose. (No supply) I will be trying another route soon. Occipital blocks (17 bi-lateral blocks) – first block stopped attacks for 17 days, all following blocks failed... Not effective Sphenopaletine block – Not effective, made attacks worse Facet block – Not effective RFG – (Radio Frequency Generator) Not effective; attacks resumed within a couple of hours Bi-lateral Occipital nerve stimulator TRIAL IMPLANT – Not effective; electricity did not ‘penetrate’ the skull and behind the eye. [Dr. Rogers from MHNI]. Dr. Todd Rozen & Dr Joel Saper Sansert – Not effective; I tried this long ago for a couple of months. Won’t try it again because of the Imitrex restrictions while taking this drug. Liquid Cocaine drops – Not effective; tried this at Diamond Headache Clinic one time; intolerable side effects (Lucid Dreaming). (Note: I’m sure that I tried a 4% solution without any success. I just read today that there is a 10% solution. Would this make any difference at stopping or preventing any attacks?). Also tried this more than a year later at home. Received one prescription and it was not successful at helping stop or reduce the cluster attacks. I reported this to Dr. Diamond as unsuccessful and that I did not want anymore. (This many about 70 yrs old swore by it though. He said you must administer it correctly. <?> Lexapro – Not effective Hydrocodone & Oxycodone – Not effective (See below) Methadone – Not effective Actiq – Allergic ( severe itching on face and head at 600mg dose ) Stadol / Nubain (ALERGIC) / Morphine / Buprinex / Dilaudid (ALERGIC) / Demerol IV ( Not effective for full blown cluster attacks. Does help for smaller attacks in combination with meds like DHE or SoluMedrol or for attacks that are pain scale 7 or LESS ) Remeron – Not effective Risperadol – Not effective Melatonin – Not effective; Helped me sleep at first but quit working quickly. Dose up to 12mg at night Diazapam – Not effective; Helped me sleep at first but quit working quickly. Dose up to 10mg at night Baclofen – Not effective Senequon / Doxepin 100mg at bedtime – Not effective Droperidol / Anapseen (sp?) – Not effective; Changes EKG readings (affects T Waves. May cause a cardiac event ?) Lortabs, Vicodin, Norco, Hydrocodone, etc ... Percocet 10/325 mg OXY IR 5mg (Up to 160mg per day along with TWO 100 mcgm Fentanyl patches for broken shoulders) NUBAIN IV - SEVERE LIFE THREATENING REACTION; STOPPED BREATHING AND CLOSED MY THROAT !! DALAUDID IV - SEVERE REACTION CAUSING URINARY RETENTION REQUIRING A CATHETER FOR DAYS, VERY UNCOMFORTABLE!! REPEATED IV DOSES OF PHENEGREN CAUSES TARDIVE DISKENESIA, HAPPENED TWICE, ONCE FOR 2 DAYS AND ONCE FOR NEARLY 2 WEEKS!!! Morphine Sulphate ER 30mg Morphine Sulphate IR 30mg Fentanyl Patches up to 200 mcgms (Have been doing 200 mcgms for over 15 months) ..UPDATE: I WEANED OFF THIS MEDICATION AND WILL NOT TRY IT AGAIN> TOO HARD TO STOP, BODY GETS TOO DEPENDANT ON THIS MED Savella 200mg per day Meperdine (Demerol) Tabs 100mg X 2 per day PRN Cluster attack, RX never refilled ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ This is what I remember anyways .... Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 8, 2015 Share Posted June 8, 2015 Good grief, Michael. You are one brave and determined clusterhead!!! Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted June 8, 2015 Share Posted June 8, 2015 HOLY FECK. HOLY FEEEEEEEEEEECK. *Hugs* That's all this chick has to say. Michael. Holy FECK man. Quote Link to comment Share on other sites More sharing options...
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