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ClusterBusters

Pixie-elf

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Everything posted by Pixie-elf

  1. Pixie-elf

    Botox Sensitive Teeth/difficulty chewing

    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 makes it so the nerve doesn't release it. Which helps with inflammation... But you'd need around a year of injections for that to happen I think?
  2. Pixie-elf

    Propofol (for tooth surgery) - is this any bad ?

    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. Pixie-elf

    Low Histamine diet worked for me!

    No problem! I'm happy to be of use! <3
  4. Pixie-elf

    Low Histamine diet worked for me!

    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, with mast cell disorders at least, generally if you take the same thing over and over again, you become immune.... Mast cells are jerks. I think I tried the low histamine diet for the mast cell problems before we knew it was mast cell disorder and therefore did me no good. (Because I react to what my body has ID'd as the enemy.) But not for CH. I'm guessing it's not my problem as I'm on a shit ton of antihistamines still (No Benadryl, allergic to that) and Anti-IGE therapy with Xolair and no joy.. But maybe once we calm enough mast cells down it'll get better.
  5. Pixie-elf

    Episodic to Chronic - advice

    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. Pixie-elf

    Episodic to Chronic - advice

    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 not sure if that's what you're looking for... But the fact I am useful keeps me here. So your love and support for your husband matters, so much, more than you even know. The thoughts do come, sometimes just as a "I'd do anything to stop this.". It just kind of happens. But knowing that we have our supporters is what keeps us going. The fact that you're trying to help him, will also help him cope, too. <3
  7. Pixie-elf

    Episodic to Chronic - advice

    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. Pixie-elf

    Zomig Nasal Spray Question

    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. Pixie-elf

    Episodic to Chronic - advice

    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 may be part of what causes our headaches. Which means, it kind of keeps you from getting worse? But it may not make you better.... So Verap may hold your headaches in place and stop them from progressing, but it's not going to fix the problem. So if you're episodic, you take it until the attacks go poof, and you're over your cycle. If you're chronic, you take it until your body builds up a tolerance and says 'Fuck this'. At least I'm assuming that's what happens... But I could be COMPLETELY wrong.... I've been known to be. (Ignore all of this, I read it wrooooong I think.) Back to your hubby.... I second the suggestion of RC seeds, they help SO MUCH. I didn't get relief from oxygen unless I got on it RIGHT away...and currently I don't have it. But RC seeds helped a crap ton. I'm a chronic. I started out chronic. Good luck! <3 Everyone else gave some super advice here!
  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 cluster headache (CH). Melatonin production is altered in CH patients and may reflect hypothalamic dysfunction. We assessed the effects of short-term CH prevention with corticosteroids on CGRP and melatonin release in a prospective observational cohort study hypothesizing that corticosteroids influence the interictal activity of both systems indicated by the change of these biomarkers. METHODS: Episodic CH subjects (n = 9) in the bout and controls with multiple sclerosis (n = 6) received 1000 mg/d methylprednisolone (MPD) i.v. for three days followed by oral tapering with prednisone. We determined CGRP plasma levels in external jugular vein blood outside an attack and 6-sulfatoxymelatonin (aMT6s) - the stable metabolite of melatonin - in 12-hour day- and nighttime urine collection prior to and several times after MPD therapy and again when CH subjects were outside the bout in complete remission. CH patients recorded the frequency of attacks. RESULTS: In parallel to the reduction of headache frequency, administration of corticosteroids resulted in significantly decreased CGRP plasma levels and increased nocturnal aMT6s urine excretion in CH subjects. No significant changes were observed in controls. CONCLUSION: Corticosteroids alter CGRP plasma and aMT6s urine levels in a cluster bout. These changes may indicate an effect of corticosteroids on trigeminal activation and hypothalamic dysfunction. © International Headache Society 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav. KEYWORDS: Cluster headache; calcitonin gene-related peptide; corticosteroids; hypothalamus; melatonin; trigeminal system
  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. Concentration-dependent dilation of the rat middle cerebral artery produced by CGRP (EC(50) of 9.4 x 10(-10) M) was significantly inhibited in the presence of 10(-8) M melatonin (EC(50) of 3.4 x 10(-9) M). In addition, CGRP (10(-7) M)-mediated increase in adenylate cyclase activity was also significantly attenuated by the receptor mediated action of melatonin. These results indicate that melatonin may interact with CGRP to regulate cerebral arterial tone. PMID: 11275006 [Indexed for MEDLINE]
  12. Pixie-elf

    New CB with a question.

    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. Pixie-elf

    Crippled by migraine, looking for unconventional help

    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. Pixie-elf

    New CB with a question.

    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. Pixie-elf

    needing some advice and help

    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. Pixie-elf

    needing some advice and help

    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 us not to get diagnosed right away. Call your neurologists office and ask for the Oxygen. They should know how much to prescribe. You should also get an MRI or CT scan if you haven't already, to rule out other issues. Just in case. I know it sounds like a pain, but if you haven't done it, it's good to do. There might be something causing cluster-like headaches and your problem could be completely fixable. Or it might be an indication of an illness that they need to treat and just haven't discovered yet. Much love, and I hope the Verapamil has kicked in, dear.
  17. Pixie-elf

    New Study?

    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. Pixie-elf

    Cluster Headache Followed by Migraine?

    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. Pixie-elf

    My Story

    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. Pixie-elf

    Work Accommodations

    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. Pixie-elf

    Botox Injections for Cluster Headaches

    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. Pixie-elf

    Botox Injections for Cluster Headaches

    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 screamer as often, like maybe once a month, if that. Except for when it starts to wear off....
  23. Hi guys! Sorry for my rough re-entry. I probably should have held my tongue, but... Oopsie. My filter is broken, as we all know. There is no fixing it. I'm a little bit cranky (okay, probably a lot cranky.) due to not feeling so hot after my Xolair injection. They kind of piss the beast off. Or it seems to. Generally I feel like crap the week after then get better. Found out the cause for all of my allergies, likely mastocytosis, just can't confirm without a bone marrow biopsy... And my doctor does not want to put me through that. For which I'm thankful. We've pretty much confirmed it without that. I'm borderline on my prostaglandins, and I'm on a crap ton of things that inhibit prostaglandins (Birth control, Magnesium, Bromelain, Amytriptaline, a few other things I'm probably forgetting.) and my histamine in my urine test is high. So we started the Xolair treatments in December. And I haven't had to use epinephrine in 3 months! Which HOLY SHIT. That's like a total miracle for me! Since I was like 16 I have had to use epi at least once a month, if not more. Last year it got to the point within a 1 month period I had to use it 8 times... Which pretty much was scaring the everloving hell out of my doctors. So the fact that my disease has suddenly improved since the once a month injections is amazing. That's not the best part. I've also finally gotten to where I can tolerate the heat without hives! Last week I took a walk in the sunshine, in 87 degree weather, and I got my first sunburn since I was 11! A sunburn might not excite you, but I didn't even know it was happening! I also didn't vomit all over the place due to the heat! That's never happened before! Normally 75 or above and I start the vomit comet! I also take walks, maybe twice a week... 2 miles to 4 miles, trying to recover my strength from the pamidronate infusions. Basically I had all of the fun chemo reactions you could have to it. It was to fix the osteoporosis, and worth it... No new fractures since! But I was miserable. I also vomited a lot, food tasted like dirt, and only one week out of the month was really good. I eventually dropped too much weight to continue it. The Xolair should cure the mast cell disorder, which in turn, should cure the osteoporosis, in theory... So I have a possible cure for some of my conditions! On the CH side of things, I'm maintaining with botox, DALT, and D.H.E. I forget to take the Dalt at times due to other brain issues. Botox lowers the intensity, but I'll take anything at this point. I had 1 month free after a Ketamine infusion last year. It was AMAZING. No clusters or migraines. I still can't really do the D3 regimen because of my issues with idiopathic intracranial hypertension. Currently we have to run my shunt at low level to prevent me from going blind, so I've usually got a low pressure headache from it unless I'm laying flat, or have drank some form of caffeine. I've fixed it somewhat with the Nexplannon Birth Control implant to kind of boost my spinal fluid. But with as bad of pressure headaches as the large doses of vitamins tend to cause me, I'm afraid to try it, and due to the fact it could risk my vision. There's also the fact that with mast cell disorders, you tend to have problems with absorbing vitamins. So I'm not exactly sure if it would work with me? So yeah. Still foul mouthed as ever. Still taking care of Mom when she isn't taking care of me. Spend time outside now along with playing video games. Also have started planting things, which makes sure I get up every day and water something other than my cats even when I feel like crap. Trying to become a little bit less disabled. Oh, does anyone have any good books to recommend? I go to the library a lot. I love me some fantasy and sci-fi. I love y'all, I have never forgotten about you and appreciate everything you have done for me. <3
  24. Pixie-elf

    I'm rougher than I mean to be. Sorry!

    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."
  25. Pixie-elf

    Hot Sauce in the noce for Cluster Headaches

    Part of the way Sinus Buster is also supposed to help in the long term is that it also depletes Substance P.
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