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Sage. Advice. Whoa - Happy ThanksBirthGivingDay, or however such a dual event is negotiated @BoscoPiko !

@BoscoPikothat is an excellent attitude to have on life, and I commend you or anyone that takes that approach. It is best if you do all that is possible to move forward and not let the illness define you. While I don’t let multiple illnesses define me, they have destroyed my life beyond repair. I spend every waking free moment trying to prevent others from walking my path in life. I pissed away numerous golden opportunities, and enormous potential. By 7th grade I was in all college level classes. I’m sure that seems impossible to believe, and it’s not to brag, but true. I did nothing with my life, but rack up debt, get in tons of trouble, and leave a path of destruction. Thus, as stated, I try to help everyone, with everything that I comprehend and have experience in. The worst thing when you have emotional or physical pain, worse, both, is to have idle time. You can take pills, go to therapy, worse bang dope, in the end, a simple fix-keep moving, keep busy. You have the perfect idea.

Your a good guy Juss. The folks on here are good.. hang with us I've learned alot from you! Happy Thanksgiving to you in the am and happy birthday to me in the am!

Hey juss I don't have my medical dictionary out at the moment and while I love researching all the info you post just chalk me up as slow if you will. I'm a cowgirl.. I rope, ride and die when in cycle. I do my best to stay apprised but refuse to let my infliction encompasses my life. On my good days I ride. On my bad days I pray..

I just looked up and learned something about hydroxyzine thanks to Juss. He's turning us into a bunch of nerds.

@Shaun brearleyUnfortunately the “specialist,” as they often demand to be called over on this side of the pond are not much better. Often with something like CH, you are subjected to experimentation, and if not careful, becoming a pharmaceutical lab rat. For the record, having being a well traveled patient with specialists and surgeons, all of those with CH seem to go through a similar battle. The only advantage that I or we have is in elective surgery, neuroimaging, and surgery. Canada is supposed to be the role model for your style of healthcare, and people fly to Poland, pay a $1,000 U.S. dollars to take an MRI and fly back. If not they won’t know the severity of the suspected cancer, and could wait much longer than 9 months. I can get an MRI the day the doctor or NP writes it, walk in. You tell me. And with surgery, if you have the right coverage, you will get exceptional surgical procedures. My point in all of this is, as of now, I don’t know what to think of neurologists in any type of healthcare system. Honestly, it doesn’t appear to be that convoluted and complicated, but I could be terribly wrong and hate to oversimplify such a devastating illness. The fundamental issue lies in profit and obtaining grants. Research grants are so damn limited and competitive that I just don’t see people in the U.S. excerpting the effort. The other issue lies in the fact that-and this by no means evidenced or medical based-I have never witnessed another illness whereby a drug works for one, fails in another, and so forth. Even the illicit options are that way. Perhaps that is why none of the pharmaceutical companies jumped on board? Again, in my ignorance I have never seen something so perplexing. Last, I am sorry for the late reply. Even I struggle, despite my experimental self-treatment. I got nailed with my headaches and was flat on my ass. My house manager came over, woke me up and told me you have to cook, remember? I was like, merde. Jesi li ozbijan? And, every hour I had to wake up baste the bird, and recently fix all the sides. The only abortive that I willl use is the antiemetic Phenergan, promethazine, but good luck. In my area it is easier to get a script for Lortab. That isn’t hyperbole. My Psych used to write it, now she can’t. She couldn’t get a script after her surgery. They push odanestron, but that does not cut it. And Phenergan came in every form that I prefer not to blast. Yes, nausea meds can make for good abortive medications. Last, and again not scientific, you must learn to knock your ass out when going through it. In a cruel twist of fate, it seems that most with CH end up dancing with the nasty bitch. With severe fibromyalgia and a exceptionally rare autoimmune condition known as Stiff Person Syndrome, I am always exhausted, and thus, with extreme pain, hydroxyzine helps in me black out. Good luck.

As for meds for CH borrowed i keep telling my Neuro this he keeps telling me that I'm wrong !!!! But I've also told him that he is a jumped up f---ing a---hole that he know nothing about CH and he doesn't want to know anything about CH and that he would be a lot happier if I wasn't his patient

Unless I am missing something, all the drugs for CH are borrowed, “Off Label.” That doesn’t help things. Worse, abortive measures are split 50, none worked for me, or I robbed Peter to pay Paul. Even Oxygen is a chance, some try to present it as if it works for everyone. I have seen otherwise. I have my theories on how to prevent, but without a lab, willing test subjects, and being at University it won’t pan out. Besides, I’m not about to pan out several hundred thousand on a useless Biochem STEM major. Talk to people, I talked to several, they are my Uber and Lyft drivers, it is a useless major. That is why I don’t pursue it. And thus, I won’t be able to help you guys. My point, when I do return to University I will invest in what pays serious money, Urban Development and Economic Planning (Real Estate Development) and becoming a Quant. I will keep researching for you guys, but I don’t know, money talks bullshit walks, niche markets don’t get the drugs, less they stand to profit.

I'm lucky well I think I'm lucky .i do only suffer from CH episodic , and your rite it's my worry that it turns to CCH which is where I'm at know we think !!!!! My last meeting with my Neuro last week was going that way . But I will cross that bridge when I come to it I guess . I'm already on D3 regime which has really helped so much . Pain levels have come down so much

My god I've just had 1 of the best 26 mins on L watching this the visuals are out of this world and we all know the music hits all the right notes

@Shaun brearleyI understand and cannot give that medical advice for obvious reasons. For those of you that functioned well, the drug can be brutal. I am just far gone and don’t notice, and I do think you can counter but few try what I posted. The FDA and Big Pharma have a symbiotic relationship and so they pass drugs if they stand to profit. I thought that NHS and the EU had yet to approve CGRP use and was correct. It works as well, without the side effects (they claim). Give it a few years and all the evidence surfaces, somehow as if magical. Here is a charity in London that provides the CGRP, 4 options. It’s expensive, but about half the cost of the drug. AGAIN HALF THE COST OF THE DRUG! It should cost £524.96 and it costs £386.5 https://www.nationalmigrainecentre.org.uk/migraine-and-headaches/migraine-and-headache-factsheets/cgrp-and-anti-cgrp-injections-for-the-prevention-of-migraine/ I know with a common law system everything is different, we have 4 commonwealth states-don’t get a criminal charge in those states. A misdemeanor, I think they abolished that in the UK back in the 60s, can lead to a life sentence. These states operate much like the UK law system. Anyway, and so, I found the latest NHS guidelines on Food Supplements and FBO “The Food Informations Regulations Act 2014.” https://www.legislation.gov.uk/uksi/2014/1855/made/data.pdf Can you take food supplements? The Amino Acids, Vitamins, Minerals, do help. I’m sure someone can link you to the Vitamin D protocol. It seems some, especially with pure Cluster Headache, hitherto CH, are unfortunately, and disproportionately, unable to find a prophylactic. They seem to try drug after drug, without success. Even though I have multiple forms of headache, I didn’t get results until extensive tinkering and using the what you guys call food supplements. CH without Migraine is another animal, especially the episodic, and my concern is if that shit turns chronic. That happened to my Uncle. He was episodic for over 30, possibly 40 years, retires and goes chronic. How does that work? And, seriously? He tried everything, and my family is the type that won’t take medication if it were to save their life. I hope that this helps. And, the charity claims a 50% to 60% efficacy rate. I would suspect hire for migraine, and much lower for CH, and somewhere between the two of you have both. Good luck. I know that Thanksgiving is American, but perhaps you can reflect on all of your blessings for the year.

I should have clarified, and in the CGRP inquiry posts that Toprimate seems to work best if you suffer from migraines or have migraines as well. Neither Toprimate or CGRP/Monoclonal seems to do much but piss in the wind for CH; however, if you add in the migraine factor the results can change dramatically. Please remember that I have an armchair M.D./PhD My headaches are convoluted, an obfuscated cacophony of CH, Migraine, and baseline, not discernible by Johns Hopkins, Jefferson (you know the doc) Georgetown (Dr. Daughtery is a top headache doc, nice but didn’t do a damn thing) GW (George Washington) (I don’t get myself there, it’s mainly trauma probably best place to go for surgical residency in the country for obvious reasons), GBMC (local does a ton of clinical trials a lot of good surgeons) Union Memorial (Top 50 Hospital affiliated with Cleveland clinic in Baltimore), despite me not going to a University of Maryland hospital with my head falling off I tried there, this could carry on. I gave up. I just see nurse practitioners now and get superior care. My point, I’m different. It works miracles for me, but for some I realize that it does absolutely nothing. Again, I have met enough people to notice that it appears to work best in people that also have migraines or migraines only. I don’t agree with sugar consumption, but even my NP’s agree with Toprimate, 32 ounces of Gatorade with your required water intake is a good idea. This restores the electrolyte balance and prevents stones, which, sadly, are about incontrovertible.

I've been on topiramate for about 8 years know like kids has said need to drink loads of water of you really do piss stones and that really does hurt . But I can't say that it's really helped me with my CH I have skipped a couple of cycles in that time but I don't know if that's down to the Toptrimate. I'm in a major S--t cycle know have been since end of July.

Here is what I can recall w/o being scientific, and FYI if I can purchase it in powder, I do. The bioavailability and absorption are superior and with those macro and micro’s that have propensities to cause the Hershey Squirts, it seems to lessen the explosion. Magnesium Glycinate bound with glycine is a non-essential amino acid, very bioavailable and the least likely to cause the trots. Magnesium Chloride has a magnificent absorption rate and is the best form for detoxing the cells and tissues. It can boost metabolism. Magnesium Oxide is the most common form sold and the worst form sold. It is not chelated and has a piss poor absorption rate. You will be the principal investor in Immodium. Magnesium Glutamate and Magnesium Aspartate if you don't recognize them, are neurotoxins from Aspartame. I hope you understand the brain damage proven by neuroimaging that that shit causes. Avoid it. Magnesium Taurate is great for those with Cardiovascular complications, has no laxative properties, and is easily absorbed. Magnesium Citrate is one of the most popular because it is inexpensive and readily absorbed. Citric acid is a mild laxative used as a constipation aid, making it unsuitable for those with loose bowel movements. I have heard of some Functional Medicine approaches to take Magnesium to the bowel (saturation). The issue is, that even if you stop for five days, you still need the loperamide. Next, your serum (blood) level should be 1.7 to 2.3, I think toxicity would require something insane as 4g to 5g per day. Most seem to follow 800mg at the bed, possibly 400mg during a panic attack, and 400mg each half-hour to an hour during a migraine. If I could afford it, I would get an IV Magnesium treatment during my 5-day migraines (it works). If you feel lethargic, experience depression, facial flushing (not from nicotinic acid) and have an irregular heartbeat you need to back off. Magnesium Carbonate, Magnesium Chloride, Magnesium gluconate, and Magnesium Oxide are the most likely to cause an OD/Toxicity. If you can't piss that is a red flag. Urinary Retention. I hope this makes sense, I can't remember much.

So I suppose we must we must identify as as an object, sex, person, place, thing a majig, an LMNOXHAYYDII OR A P. So.. duh du duh du duh..: Ice Pick Warriors Lightning Lovers Spike Enemies Eyeball Sweller's Eyelid Drooper’s Hot Pick Troopers Shock Therapy Snoopers Pain and Hell Dwellers Suicide Never Livers Rainbow Brain Seekers Between the the Cluster Sneekers Life Lovers Strong MFers Don't Like that Smellers