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Everything posted by Pixie-elf

  1. If chewing is a CH trigger, or you have trigeminal neuralgia, it may actually help somewhat. I know that when my botox starts to wear off, about 2 weeks before it's time for my appointment, my teeth get really sensitive... They're sensitive anyways as I have TMJ disorder, and trigeminal neuralgia, but, they get a lot moreso without the botox. So it might be worth a shot? If nothing else, at all has helped, it might be useful. But as it was said, it would take at LEAST 2 rounds for you to find out for sure. From some of the research, Botox over the long term lowers CGRP antibodies and ma
  2. I much prefer ketamine for anesthesia. It sometimes will even stop a cycle and is shown to HELP headaches and treat them.... Including CH. There's paperwork on it. Infusions are done on it. So your anesthesiologist might consider trying it instead! https://www.ncbi.nlm.nih.gov/pubmed/27067225 It's used as an anesthesia, sometimes mixed with propofol, and other things, so that might help? Just an idea!
  3. No problem! I'm happy to be of use! <3
  4. I don't know if this shines a light on anything, and I don't think they've done more research on it, as, it probably wasn't that interesting to them... But Mast Cells play a large part in allergic reactions. (And in life itself...) They release histamine and, oh, about 500 other hormones. And they've found them all up in our faces in the areas we have Cluster Headaches. https://www.ncbi.nlm.nih.gov/pubmed/6733778 And https://www.ncbi.nlm.nih.gov/pubmed/2272091 Benadryl prevents mast cells from releasing histamine. Which is believed to also stop mast cell activation. The problem is,
  5. Sumatriptan should not be refused, because it's a medication. You're supposed to carry ALL medications on your carry-on, from what I recall from the TSA... So it doesn't matter what it is. You keep it with you. I kept my epi-pens on me, and they're liquid injections in a tube that you jab in to your leg... though they had to separate those and scan them separately. (They were kind of like "WTF??") It's been a few years since I flew though... I always drank an energy drink beforehand!
  6. Well, for starters... I cope with the thoughts by knowing that I have a good support system, and a lot of people who love and would miss me if I were gone... And that usually prevents me from doing anything drastic. Knowing that, and that I am needed helps. Then there's the fact that the attack -will- end eventually... I might have another one later, but the one I'm in, will stop. Knowing that also helps. But mostly knowing I am loved, wanted, and cared for is the best thing to help keep me from doing anything drastic. It helps anchor me. Knowing I have unfinished work on this Earth. I'm
  7. Actually, I re-read it with fresh eyes today. I think I had it completely wrong. It looks like verap doesn't inhibit the contractile response in CGRP. But it also might not have anything to do with us, because contractile response is where things twitch? Ah well.
  8. The other migraine medications it's referring to are other triptans, or dihydroergotamine. As they can have a very severe reaction if taken together and cause a heart attack. Taking your preventative, and abortive is just fine. Zomig's generic name is Zolmitriptan, so, you don't want to take any other medication that ends with 'triptan' close together with it, is all that it's warning you about.
  9. Possibly the reason he's getting hit more right now is because on the 20th, we have the Solstice coming up. Most of us get hit WAY more during this time period. Things tend to calm WAY down afterwards. My neurologist said it has something to do with hormones... I know my hits get a crap ton WORSE every time the solstice or equinoxes swing around, and it's not just because my botox wears off! Also, I'm not sure if I'm reading THIS right but... if I am, I think what Verapamil does is it stops you from making excess CGRP, or reacting to it. https://www.ncbi.nlm.nih.gov/pubmed/8523457 Which ma
  10. https://www.ncbi.nlm.nih.gov/pubmed/24958681 Format: Abstract Send to Cephalalgia. 2015 Apr;35(4):317-26. doi: 10.1177/0333102414539057. Epub 2014 Jun 23. Corticosteroids alter CGRP and melatonin release in cluster headache episodes. Neeb L1, Anders L2, Euskirchen P2, Hoffmann J2, Israel H2, Reuter U2. Author information Abstract BACKGROUND: Calcitonin gene-related peptide (CGRP) is a marker of trigeminal activation in acute
  11. Found this little interesting tidbit... It's from 2001, but figured it might be useful. https://www.ncbi.nlm.nih.gov/pubmed/11275006 Eur J Pharmacol. 2001 Mar;415(2-3):247-50. Melatonin inhibits calcitonin gene-related peptide-induced vasodilation and increase in cAMP in rat middle cerebral arteries. Viswanathan M1. Author information Abstract The action of melatonin to alter calcitonin gene-related peptide (CGRP)-mediated vasodilation and stimulation of adenylate cyclase activity in middle cerebral arteries of rats was investigated. Concentrat
  12. I think Indomethacin is both an abortive AND a preventative with HC. So basically, once you know your 45 days are coming up, I'd start it like 10 days beforehand. That way you get it in your system. It's a potent prostaglandin inhibitor, so it'll stop a lot of inflammation. It's also a COX-1 and COX-2 inhibitor.
  13. For migraines, it tends to be Topamax, these days. If you can't tolerate it, they swap you to Zonegran, which is Topamax's little sister, and much more tolerable... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3663475/ I would honestly suggest for migraines you go with the same dose we use for clusters. 1.5mg, It helped my migraines a hell of a lot!
  14. I would suggest that you maybe get to a Headache Specialist for proper diagnosis. And ask your neurologist for the actual name, because 'Migraine on Steroids' doesn't tell you what it is. You need a full neurological work up, MRI, CT scan, all of that, because what you have may be entirely curable or, it could be something that needs immediate treatment. Please take care of yourself. Do the triptans help the headache at all? Is it only 1 headache that lasts for 3 days every 45 days?
  15. Also, energy drinks to abort!! If no one has mentioned it, you can drink one pretty quick. Energy drinks or shots. Just make sure it has caffeine and taurine in it, so long as you don't have heart problems!
  16. Sugarplum, you probably experienced what a lot of women do... Doctors like to deny that women get CH because it's a 'man's disease'. Just like they claim men don't get migraines as often as women. It's not known exactly what the ratio is, probably because a hell of a lot of women are misdiagnosed or UNDERdiagnosed. I've had excellent neurologists try to tell me how rare it is for women to have CH years ago. Like, seriously? You don't see that many of me?! What the hell are you doing, bro?! I've had doctors straight up tell me that women don't usually get those. So yeah. It's normal for u
  17. Hmm... This makes me wonder if this will work on Idiopathic Intracranial Hypertension too. Octreotide worked on it, as well. I wonder if it works without the constipation? If so that'd be a big benefit.
  18. I'm honestly surprised they didn't do a CT scan or MRI, since you took a Zomig and still had a headache... So, my question is, what did the headache feel like, if it was different than your CH? That's kind of important to know. I would go and get a scan to make sure that something didn't happen when you were having that hit....
  19. Melatonin is responsible for inhibiting this stuff. https://en.wikipedia.org/wiki/Prostaglandin_E2 Super important for us. Here's a little more about it! https://www.ncbi.nlm.nih.gov/pubmed/9694402 It does all kinds of good things, so it helps in the long term.
  20. My only suggestion is having cold energy drinks on hand to deal with the hit that comes after each intake. If you put it in a cup of ice, and drink it near the end, it might abort it before you have it happen.
  21. I should have clarified, if the injections she's been getting and are working for her are nerve blocks, botox may help. If the injections you mention are Imitrex, or an abortive, then I suggest getting nerve blocks first. You may get much better relief that way without a 1 week waiting period! They are not the same thing, though, like Ecaseson said. Today is one of those 'my English is not working.'. XD
  22. If the injections you''re talking about are nerve blocks, then botox is worth a shot at least. I get it every 3 months, it reduces the intensity of my cluster headaches, and it's believed to eventually lower what is called CGRP, which causes inflammation and may cause headaches in the first place, but it takes time for that aspect to kick in from what I've read. I think they've said about a year? It also hurts, and makes me feel like I've had the shit beaten out of me, to be blunt. The first week has awful slapbacks. Then it kicks in and I have some relief. I don't wake up with my 3:43
  23. I use no apps for tracking that, pretty much. Because it's generally a lot of 'jack' and 'shit'. XD Only rarely do I take the D.H.E. because my doctor is kind of picky about it. Probably also because it's so instilled in me that "CH is normal" for me that I don't register that it's a different state of being, or assume I should make note of it, unless a doctor asks me to. And none of my doctors bother to any more. It's been a while since they asked for a headache diary. So when a CH happens it's more like "Oh, THIS bullshit again."
  24. Part of the way Sinus Buster is also supposed to help in the long term is that it also depletes Substance P.
  25. Okay, well the first thing is, does she have an accurate diagnosis? Has a doctor actually diagnosed her with CH? Because this is kind of key. What she has may or may not be clusters and you don't want to treat her for clusters specifically if it isn't. There are also a lot of bad things that present like cluster headaches, and need to be treated, but that busting isn't a good option for. So it's very important that she actually have a diagnosis from her doctor of this, and all other causes are ruled out. If she does have a diagnosis, then I would suggest moving on to Bob's Big Pocket Guide
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