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Pixie-elf

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    Pixie-elf got a reaction from Chronic2017 in 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.
  2. Like
    Pixie-elf got a reaction from ThatHurtsMyHead in 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!
  3. Like
    Pixie-elf reacted to CHfather in Atypical (light) episode vs heavy prescription drugs   
    First of all, you don't seem to have oxygen.  A proper oxygen setup will reduce your abort time very substantially, without medical side effects.  Knowing you can abort most attacks within 10-15 minutes might help with the anxiety, too.  Any neurologist who doesn't prescribe oxygen is not an expert.
    The idea that if you don't treat your episodic CH properly it will become chronic is, I believe, completely ridiculous.  Talk about making you anxious!  That just seems like a very uninformed thing for the doctor to have said. 
    Lithium is recommended to be prescribed only for chronic cluster headache, because of the side effects and because it has been shown to cause significant rebound attacks when you stop taking it.  The article, "Treatment of Cluster Headache," on this page would be worth reading for you, I think:  https://clusterbusters.org/medical-research-reports-studies-case-reports-links/
    I know of a person who had CH and also anxiety and was prescribed lithium.  I don't remember the dosage.  While I'm sure that lithium helps many people with psychological conditions, for this person it seemed to have no effect on the CH and it seemed to make her more anxious just to know that she was taking lithium, if that makes sense.
    Triptan pills are usually not effective for CH, because they take too long to work.  Maybe your attacks would end in 30-45 minutes without it.  A sensible doctor would prescribe at least the oral spray, and probably the injections.  Not everyone thinks that triptans are a good idea, but if you have oxygen you could use the triptan for breakout attacks that aren't helped by the O2.  The only way the pills seem to help people, as I underswtand it, is if they know what time their attacks usually come and take the pill an hour or so before that.  That's what I am remembering. 
    Many people find that taking melatonin at night helps with attacks.  Since as I understand it melatonin is a prescription drug in some countries, you might not be able to get it.  If you can -- start at 9mg/night and work up from there.
    Please consider the D3 regimen described here.  It might be kind of daunting to read the information even though your English is excellent, but the basic ingredients are listed in a table and that's most of what you need to know.  Because it is so effective at preventing cycles or at least reducing how bad things are during a cycle, I think it has reduced many people's anxiety about their cycles.  https://clusterbusters.org/forums/topic/1308-d3-regimen/
    With all of that said (suggesting that treating your CH more effectively is likely to reduce your anxiety), anxiety and fear are things that many people with CH experience. And, yes, also depression. It has effects that are very understandably like what we call here PTSD -- post-traumatic stress disorder.  Others might talk about how they cope, but I will say again that there are basic things you can do to make the experience less terrible.  Some people find that psilocybin ("magic mushrooms") has had a very positive effect related to their emotional symptoms (and it also actually treats CH).  You would have to decide whether you want to go that way.  I'm not recommending it for you; just passing along the information.
     
     
     
  4. Like
    Pixie-elf got a reaction from spiny in 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!
  5. Like
    Pixie-elf got a reaction from AnitaJ in 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. Like
    Pixie-elf got a reaction from jon019 in 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!
  7. Like
    Pixie-elf got a reaction from CHfather in 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
     
  8. Like
    Pixie-elf got a reaction from CHfather in 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
     
  9. Like
    Pixie-elf got a reaction from CHfather in 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
     
  10. Like
    Pixie-elf got a reaction from CHfather in 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.
  11. Like
    Pixie-elf got a reaction from CHfather in 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.
  12. Like
    Pixie-elf got a reaction from jon019 in 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!
  13. Like
    Pixie-elf got a reaction from jon019 in 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!
  14. Like
    Pixie-elf reacted to spiny in Episodic to Chronic - advice   
    Not sure if he knows the definition of chronic. Some authorities say only two weeks PF for a year and other say four weeks. Many of us go thru that fear when we have a cycle that is not the norm or lasts longer than usual.
    I have read that for some people they actually find it easier! They say it beats the wondering if they will start a cycle this week or not.
    Sorry, that is the best I have to offer. What is he doing for his CH now? Has he found no way to get it under control at all?
  15. Like
    Pixie-elf reacted to jon019 in Episodic to Chronic - advice   
    My greatest fear over  23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe.
    Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable.
    Best
    Jon
  16. Like
    Pixie-elf reacted to CHfather in Episodic to Chronic - advice   
    Anita, will you say what meds he's taking, and at what levels?  He has oxygen?  Is he doing the vitamin D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/
    The D3 regimen has been very, very helpful for a lot of people.
    And is he willing to try busting (ending cycles and preventing new ones using psychedelic substances, potentially at levels that cause no psychedelic effects at all)?  Many people have come to this site feeling that they were out of options, and busting has given them their lives back.  You can read about busting in the numbered files in the ClusterBuster Files section.
     
  17. Like
    Pixie-elf reacted to AnitaJ in Episodic to Chronic - advice   
    CHFather, thank you--I always appreciate reading your responses on these boards.
    I'm sending him the D3 regimen info now--he's probably not yet able to read it through, since he's in a bad cluster, but I'll scan it and see if I can provide him with the highlights.
    He's open to busting, and if I can get him to read the files I'd consider that a huge win. 
    I don't know the exact levels of his meds, but he's on Verapamil with the Sumatriptan injections (which we've learned to split, thanks to this site, and that's been very helpful), and currently on Prednisone to try and taper this particular cluster. He may be on other meds, I'm not sure--he works closely with his doctor to monitor them as we're both aware that taking a large amount of pharmaceuticals can be harmful in the long run. It is not the way we want to go, but right now we are truly trying as much as we can.
    Despite my continued pushing to use O2, he is convinced that it does not work for him. We have two tanks and a nonrebreather mask, and we have tried before, but he will no longer use it. It's extraordinarily frustrating to me, as I think he could learn a lot about the proper use and technique of O2 to potentially get relief, but he won't try it. I wish I could have another CH meet up with him to discuss the benefits. Understandably, he doesn't want to get his hopes up trying something that may not work; but it's very difficult for me to sit here while he stubbornly refuses to try it again.
    However...it's his pain, and I'm here for support--not criticism. He is doing his best to live through this agony, and I admire him and love him. My heart breaks to watch him go through this, but whatever I can do to help him, I'll do. I'll gather as much information as I can but in the end, all I can do is love him and lift him up however I can.
    I appreciate this site and your support. It's really helping at this particular low time.
     
  18. Like
    Pixie-elf reacted to spiny in Episodic to Chronic - advice   
    If possible, go to the Convention in Chicago!! They will stress O2 and teach him how to use it among many other things!!! It is in September for a weekend. You will learn a lot too. Many supporters attend with their CHer.
    Info is on one of the other boards on the main page. Also on the opening home page where you start when you sign in. It would be great for both of you.
  19. Like
    Pixie-elf reacted to CHfather in Episodic to Chronic - advice   
    At least the doctor he likes isn't crazy: the prescriptions are sensible.  During a cycle, many people need as much as 960mg of verapamil, and I think -- spiny, please correct me if I'm wrong -- that it's generally been observed that the short-acting verapamil is more effective than the extended release. Or it's the other way around!  spiny or someone else will clarify.
    We get that he's doing what he can, and it is important to know that it's widely believed that extensive use of Imitrex will make subsequent hits worse and more frequent, and make cycles longer.  Oxygen is the way to beat that -- abort with O2 and you need a lot less trex.  But we also get the reluctance to get hopes up and then be disappointed.  That's one of the cruelest things that CH does to many, many people. 
    As spiny says, attending the conference could be a great thing for him (and you).
    Here's a final refrain that you might have read here.  If O2, properly tried, doesn't work, then it's possible that he doesn't have CH.  Really, "properly tried" is nothing fancy. If he had tanks, a regulator that goes up to 15lpm (or maybe even 12 lpm), and a non-rebreather mask, and there was nothing functionally wrong with the system, in my opinion he should have felt some relief from O2.  So you do want, I think, to consider the possibility that he has a CH "lookalike," most likely some form of hemicrania.  We've had a few people here who were diagnosed with CH who actually had hemicrania continua (HC).  The good thing about that is that it's treatable with a medication called indomethacin.  Maybe you might look into HC and it might be something to be suggested to his doctor.
  20. Like
    Pixie-elf reacted to jon019 in Episodic to Chronic - advice   
    Yo CHf...best to you brother...
     
    Re verapamil....I was ona the upper limit guys...sometimes over 1000 mg/dy (480 mg/dy seems to be the sweet spot for many) . Extended release...for ME...was worthless no matter the dose. Got it once by accident and the panic that ensued (IT DOESN'T WORK ANY MORE!!!!!) is still SEARED in my brain. At least experiment. I had some success TIMING the split doses to just prior to anticipated hit times!
    Re O2....mixed feelings. At one point I was poor and had crummy insurance. Had to buy O2 out of pocket...$10 per e tank...which was quite reasonable...but still. This gonna cause eyerolls and guffaws... but I used 4-5 LPM and successfully (aborted about 60-70%) because I had to conserve. Wrong mask...wrong technique... Later, found success with better technique, 15 LPM and the right mask...Other times 20-25 didna work. see O2 thread at ch.com for near everything ya need to know...AND get the right mask...available from the store there. My gut feel is that O2 is not 100% effective no matter what...BUT proper setup, mask, and technique are CRITICAL before giving up...........
    Never liked Imitrex....made me feel "ooky"...found my favorite rescue med to be Zomig 5 mg nasal spray (99% effective...no rebounds). Damned expensive and damn insurance companies always made obtaining a trial....
    Best
    Jon
     
     
  21. Like
    Pixie-elf reacted to spiny in Episodic to Chronic - advice   
    CHF
    Sorry for the late reply. Short Acting NOT ER (extended release).
    As Jon said, ER can mess you up and you think it no longer works, or never worked!!! Short acting, I too tailored to my normal hit times. One during the day and two spaced out over the night. Trust me, if you are in cycle, you will NOT forget that second pill after you kill a hit. I had to beat this into my docs head BTW.
    Sure have spent a lot of time educating my Neurologist. Too bad it doesn't pay in dollars. At this point, I mostly go for the annual for one script for the neck pain and to educate the sweet man. He is a really good man, just not enough education is given to these guys in school.
    Imitrex: I have taken exactly two pills my whole life. Not afraid of shots, just not going thru the problems that Trex brings. Heart  disease? No thanks. I would rather beat my head on the floor than touch it. Of course that is just my opinion. And we know that thing about opinions, right?
  22. Like
    Pixie-elf reacted to CHfather in Episodic to Chronic - advice   
    You're the best, Moxie.  Glad to read all this.  Very interesting that you're microdosing.
  23. Like
    Pixie-elf reacted to MoxieGirl in Episodic to Chronic - advice   
    HI Anita, and gang.
    I've always been chronic, and to be honest, being episodic used to scare me. Sort of along the lines of what Jon said above. At least when I was getting hit all the time, my life was prepared for it. I always said, still do actually, life is what happens between headaches. Although these days, it's mostly chronic migraines and chronic daily headaches. Cluster Attacks, not so much any more. 
    In 2011 I was getting up to 5 vicious attacks a day, every 2-3 days for an entire year. That was about my worst year with Clusters since they started in Jan 2007 (add on top of that my migraines and daily headaches, of course). I had gone through, and maxed out every drug the doctors could give me over the years, and they just got worse and worse and worse. If I had 3 days attack free, I was amazed. And when they hit, it was HELL on Steroids! 
    Nov 2011 I had my calendar in front of me, and was selecting a date on which to leave planet Earth. I had decided to give myself one more year to find a solution, and then good bye. I had been told about this board in 2010, and read through some of the pages. But to be honest, LSD scared me. I've never done anything harder than pot, and that was when I was very young. As a result, I had always held this option as a last resort. That day when I was picking a date to die, I knew I had reached my last resort.
    So, I joined the forum, and was instantly greeted by the warmest and nicest people on the planet. You've met them already. I began coming off of Topomax (Topiramate) as quickly as possible, to quickly if I'm honest, and I spent all my free time reading these pages. By the time I was clear of the doctor prescribed "waste of time", I had a small amount of shrooms and some RC Seeds.
    After my very first dose, I knew I was onto a solution. My next attack after that dose was COMPLETELY different than anything I had ever experienced before. I knew the routine, I knew the schedule. But this attack after busting, it didn't follow the schedule, or the routine.
    My routine was: Sudden attack, like being hit in the face with a baseball bat. 30-60 minutes of extreme pain, usually sitting on my bed rocking back and forth with snot dripping down my face, followed by 20-30 minutes of uncontrollable tears and shaking, as if someone where rattling my bones. But, after my first bust, there was NO post traumatic attack. No crying, no shaking. I had a short, 20 minute attack or so, and then got up and dusted it off and got on with things like it was no big deal. The attack was sharper, and 'clearer' than any other. It was like crisp, cold, crystal clear water instead of the heavy, oppressive attacks I normally got. 
    It took me the better part of a year of busting on and off to make a huge difference, but a difference it made. Year 2, I only busted occasionally, a few weeks at a time 3-4 times a year. Two years ago I started micro-dosing, which is amazing! It involves taking a small dose (0.20 grams or less) every day with no tripping affect. But, I don't even do that very often now. In fact, all my busting material is going to my best friend who has ALS, she needs it more than me.
    Do I still get attacks? Yes, I had one yesterday in fact. It lasted about 30 seconds. Took my breath away and brought a few tears to my eyes, but that was it. I get 1 - 2 attacks a month now, and consider anything over 15 minutes a shockingly long attack! In fact, 5 minutes is unusual. 
    I'm not as scared of being episodic now as I once was, simply because my attacks are not what they once were. I'd be concerned though that if they stopped for a year or two, they might come back with a vengeance. But I have a solution now. I know how to stop them, and I have no plans of leaving this planet anytime soon. 
    MG
  24. Like
    Pixie-elf got a reaction from CHfather in 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.
  25. Like
    Pixie-elf got a reaction from Ricardo in 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?
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