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Pixie-elf

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Posts 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 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. 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.

    • Thanks 1
  3. 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!

    • Like 1
  4. 22 hours ago, AnitaJ said:

    Wow, thanks everyone! This is all great stuff.

    I did have questions about suicide specifically...while I don't think my husband is suicidal, I can't imagine that it hasn't crossed his mind. How do you cope with those thoughts?

    MoxieGirl, I'm so very glad you're OK and you're here. And in case anyone else is wondering, you guys are an inspiration! Seriously. Your strength and your support is amazing.

    I think it's time to give busting a try. I guess the place to start is...where would we get them!


    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
     

    • Like 3
  5. 23 hours ago, jon019 said:

    Hiya Pixie,

    Thank you....never really thought it out. Haven't read the article but that describes EXACTLY my experience with verap. Always seemed like it was just holding something back, sometimes tenuously....like by a fingernail. Explains the need for constant (sometimes constantly increasing) serum level or successfully timing doses or need for dosage increase either over time or depending on cycle timing....

    Best

    Jon

    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.

  6. 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.

    • Like 2
  7. 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!

    • Like 3
  8. https://www.ncbi.nlm.nih.gov/pubmed/24958681

     

     
     
     
    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.

    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

  9. 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.

    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]

     

  10. 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.

    • Like 1
  11. 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?

    • Like 2
  12. 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.

  13. 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.

  14. 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....

  15. 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.

    • Like 1
  16. 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

  17. 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....

  18. 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."

  19. 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 To Cluster Headaches.

    It has a lot of useful information and will help you out as a supporter and will help you learn all of the options for her care.

    Good luck!

    • Like 1
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