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ClusterBusters

JavanHead

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Everything posted by JavanHead

  1. Hey all, this is my first post. I've done a bit of lurking and reading and thought I'd drop in and say hi and see if I could get any more information, or if my situation could help anyone. Introduction - I'm a 31 year old African American Male from Ohio. I enjoy whitewater kayaking, videogames and running with my pups. And travel, and fun awesome things like that. I smoke marijuana and cigarettes - about 7-8 cigs a day. Anyways, near the end of June I began experiencing earth-shattering headaches. I know I mentioned I'm a smoker, but other than that I'm generally pretty healthy. I paddle all of the time, run my pups 365 days a year and consider myself a very strong person. I never got headaches regularly before - EVER (well, other than the time I quit smoking and I got bad headaches for a week). And now I was getting them, every single day..multiple times a day! Madness! I took excedrin for them, but after taking 2,4-8 excedrin pills a day for a week I just couldn't do it anymore so July 5th I went to the ER ( I don't have insurance). At that point I thought I honestly had lyme disease. As I mentioned, I run my dogs every single day; and through the woods next to my house through countless amounts of brush, wood, trees, trails, mud water, you name it. I've been known to pull a tick off of them, and myself from time to time. The ER doctor agreed (sure! What else were they going to do!?), sent me home with Doxycycline - I took it everyday for a week, and while I think there was 1 day that I did not get an earth-shattering headache (unable to move, eye bulging, watering, crying etc) - the doxy was not working. I then scheduled another doctors appointment for about a week out and between the end of the doxy and the actual doctors appt, I acquired some mushrooms because I heard they could help CH suffers (I was beginning to "warm up" to the idea of having CH). So I took some mushrooms at my girlfriends new place, the ceiling exploded due to a leaky water pipe which it a whole nother story in itself; and THEN I got a crippling headache WHILE on the fungus! That was not fun, but I'll tell you it - it sure was interesting - imagining the 3 "good" quadrants of my brain trying to fix or "heal" the 1 "bad" quadrant. Ha. But it was around this time that I figured out that Excredrin Tension w/ Caffeine but w/o the Aspirin aborted my headaches. So I quickly chewed on a pill and about 45 minutes later the CH was gone. It was at that moment that I lost faith in the mushrooms; which perturbed and upset me greatly because I am actually quite fond of mm and was looking forward to consuming them more regularly. Anyhoot - as mentioned I was beginning to figure out that excredrin tension, and more importantly - the Caffeine was aborting my headaches and I've come to find out that it keeps them at bay. Meaning - if I ingest caffeine throughout the day - I will not have a headache. Which is great..but it makes me a bit jittery; and I need to sleep at night. And more often than not the CH rears its ugly head...at night. So I'm sure you can imagine and emphasize how counter-productive and depressing it is to take caffeine, to sleep. I'm still trying to wrap my head around it. So then I end up smoking more marijuana and sometimes taking melatonin; and honestly I don't want to do either. Thankfully I am happy to report that I do work from home, own my own internet marketing company and have a few partners that rely on me; but are very supportive of this newfound condition. But - I am sad to report that the overall situation has left me a wee bit depressed, PTSD'ish, always wondering when the next headache is going to pop, and scattered overall - including my sleeping schedule being absolutely F*cked. I was also getting more into exercising but with all of the ups and downs and poor eating habits, I haven't found the time!. Oh, and did I mention that the actual doctors appt prescribed prednisone - which WORKED! on Day 3 through 6 of taking the pills, I did NOT have a headache and it was fricking amazing. But on day 7 one came and they've been making their way back even since. Oh and then I go the flu a few days after getting off the prednisone pills - perhaps due to my lowered immune system. Anyhow! Sorry for my incessant rambling, probably the caffeine, and/or the marijuna . I actually feel a lingering headache now and it's close to midnight (my bedtime), but I'll be drinking 60-80 MG of caffeine OR taking an excedrin pill before bed - and be up to about 2am! Thanks for listening and I seriously applaud the bravery and strength it takes for you anyone to go through this condition. I have not been formally diagnosed (I have another doc appt in 2 days), but I am 99% positive CH is what I have... Questions - 1. Ideas thoughts about the caffeine usage to abort/keep the headaches at bay? Any types of caffeine that DON'T keep one awake? Lol 2. I've currently been in my "cycle" (sorry, not 100% on the jargon) for about 5 weeks. From what I'm reading they typically last for about 6 weeks and then can go away for YEARS. That's true right!? Man I'm really really really hoping this to be over in a week. I think they are lessening as far as how many headaches I'll have throughout the day, but again I can't really tell because I'm drinking caffeine every day now. (I used to drink maybe a cup of coffee every other day, very semi-regularly). 3. Ideas/thoughts on the mushrooms? I've read about having a more strict schedule w/ them as far as taking them 5 days apart 4 times in a row, etc. Perhaps this could yield better results? I need to get organized... 4. I've read quite a few things on the internet, but haven't really tried anything too extensively besides the caffeine and more exercise. I have read this https://clusterbusters.org/treatments-options-choices-and-more/anecdotal-non-prescription-cluster-help/ and a bit about the D3 method which I AM curious about. I am definitely NOT crazy about taking pharmaceutical drugs or supplements, even tylenol and would love to solve this issue naturally if possible.. I've also read about the water method..seems kinda crazy, maybe I'll try it.. THANK YOU ANYONE AND EVERYONE. KEEP PUSHING ON. Note: I've decided to attach a silly picture of me in my kayak, to put a face to the crazy antics mentioned above. Lol.
  2. Hey CH, thanks man - and yeah I'm really not sure if it's working either. I honestly feel the same when I'm not having these headaches. And so good news/bad(ish?) news - I didn't have on since about Friday at 9pm when I drank a red bull and it was gone. Saturday early evening I busted, hoping to god that I didn't get hit while busting. Had a great bust, walked 7 miles, felt great and amazing all day. Went home and crashed. Sunday woke up feeling slightly refreshed. No headaches all day. Today woke up in a *little bit* of a fog, felt like I had a "normal"ish headache but it was based in the front of my head kinda and it was just mostly pressure. Maybe a caffeine headache because of the previously 2 weeks daily caffeine usage and now I was weaning (or almost stopping altogether) all the way off it? Anyways, I drank a half cup of coffee and some unsweetened tea and my head came back clear But then tonight around 8pm, what I felt was a *normal* head pain, got slowly and slowly worse until I could definitly feel a real deal cluster coming on. I'd say pain was about 3/10 on *cluster* scale - so not absolutely horrible but I filled up a cup of stove brewed coffee and chugged it. Within 15 minutes I started to feel a bit better and about 45 minutes it was completely gone. I've sourced 85% of the vitamins and am just waiting on the vitamin K from Amazon. Hopefully that helps. Maybe the verapamil is helping, maybe not? Maybe the better diet and more exercise is helping too as the past few days I found myself running my dogs, walking more and being generally more naturally energetic since I hadn't been hit in a while. In the process of writing Batch back as well via email. QUESTION - Since I busted Saturday early eve - I should bust Thursday, correct? If I wait until Friday is that too long? I will ask on the "Share busting" thread as well - just wanted to quickly ask. Thank you again and hope you all are finding some relief!
  3. Thanks guys, will start taking the D3 regimen Monday or Tuesday. One thing though - so I had planned on "busting" today - but yesterday I had zero headache until about 9pm, and even then it wasn't maddening. It literally could have been a caffeine headache or a shadow headache. I drank half a red bull and 20 minutes later it was gone. I then saw Meg in the theatre by myself and felt fine all night. Came home, smoked some pot, took 10mg of melatonin and fell asleep. Woke up at noon. Felt and feeling great. My question - I was going to BUST today - any recommendations against it? It shouldn't *bring* the cycle back, if it it's already on it's way out, right? Maybe the verapmil is working... Hmm Thank you again and yes I agree Dr was a quack but at least he is willing to prescribe me oxygen!
  4. Hey man, how much MM do you take each bust?

    I don't mind and actually like taking mushrooms, as it seems you do as well - so I'm not afraid to do 2..3...4mg if I have to.

     

    Any thoughts?

     

    Thanks!

    1. Twisted-Melon

      Twisted-Melon

      Sorry for late reply

      i prefer to get there so to speak as that not quite there feeling is horrific as I’m sure you’d agree

       

      so I’d say min of 3gr dried

  5. Oh, and he said that the triptans CAN'T setup potential "rebound" headaches ,and that the excedrin CAN . He said he has many cluster headache patients and will research the MM.. Any thoughts on that?
  6. CHFather, Thanks for the tips on the exercise, may try that out one day; though I'm not sure if I could ante up before it set in completely! ha. And my heart goes out to your daughter, I hope she finds relief way more often than not. So news from the Neuro: They prescribed me imitrex and told me to continue taking the verapamil, and the verapamil *could* be working as I haven't had a headache today yet at all - and I've only had one cup of tea, early in the morning. I also went and got the Vitamins recommended besides the K and am currently following up with Batch - so I will start taking all of those, as directed soon. The Neuro did not have any knowledge of MM, nor Vitamin D3 to prevent or treat cluster headaches, but did say that if the imitrex and Verapamil don't work; he would prescribe me oxygen - so that is a plus. He was actually most interested in my marijuana usage and was very surprised how easily I was able to get a hold of it...lol ? Maybe I need to find a new neuro.. But not until I get the oxygen! Also put me up for an MRI - said they would call me early next week to schedule it. Haven't had one today. Feeling fine... Thank you all and thank you Spiny for the error tip!
  7. CHfather, Thank you for your kind, assertive and meaningful words. I WILL look into the oxygen. I am understanding more each day that it very well may be necessary to have a high quality of life if I acquire some oxygen and get to it. Caffeine has worked most days recently, but you're right - it has left me feeling jittery, anxious and irritable. A question about oxygen - Is inhaling oxygen for CH headaches similar or the same as taking a full speed run for example? I noticed that a few weeks ago when I had a really bad one coming up, I got up and immediately started running on a trail right outside my house... I probably only ran for about 7 minutes but I was running fast hard. When I stopped (because my dog had to pee) - I had noticed my headache get probably 25-40% better, but it still was pounding so I took the excedrin I had in my pocket and walked back and waited it out about an hour until it was completley gone. Anyways - I still had more in the tank and I always do. As in - I could run at my near-max speed for 30 minutes straight if I had to - and longer, much longer - at a more normal pace. If I became a trail runner and ran literally 365 days out of my life - obviously it would improve my health in other areas, but would that aid me in preventing CH at all? I would guess no, because O2 is an abortive and not a preventative, and I would probably have to suck more air than just running.. Anyhoot - Zomig is a triptan, got it. Triptans are bad and can promote rebound headaches. Similar goings for steroids - and I definitly don't want to get into the business of taking those regularly either. I was just hoping there was a wonder-drug out there that produced NO side effects and everything was going to be just fine! I know that is not possible, just being humerously optomistic And thank you really for your responses and your sternness. I am NOT taking this disease/condition lightly and I WILL do what it takes to get it under control. I WILL PROCURE the vitamin D and other supplements today, probably before my neurlogist appointment. As far as the mushrooms - I myself am not averse to taking them. While I have NEVER taken them with such high frequency, I am up for the challenge and don't mind the feelings that come with the MM. In closing, thank you, thank you, thank you. Please do not get frustrated by my stupidity or my naivety. I am new at this and figuring it out one day at time. I welcome any and all responses. Jon - thanks ! I will fucking listen!! Really appreciate you guys!! Batch - appreciate it man. I have it in my inbox and will read through it in it's entirety shortly! CHfather - Thank you for sharing the beautiful story about you and your daughter. I am so sorry to hear that both you and her suffer from the same condition; though it sounds like it may be a sort of a rocky bridge that helps keep you together as well. When I start on my hunt for the 02 I will stay away from the concentrators - I have heard that they don't go up to a high enough LPM. FunTimes - thanks for the tip and the additional recommendation on the O2 man. I have a few welding buddies and a few doctor friends so hopefully I'm about to source some tanks and setups quite easily. Hoping for the best! Thanks again Thank you again, Listening Always...
  8. Here is my message to Jon attached. Sorry about that. I keep getting that error that I posted above for some godforsaken reason.
  9. I keep trying to post it in chunks, but it wont let me do that either Anyone have any ideas why it won't let me post the long message? I guess I could upload a screenshot of it..
  10. I wrote out a rather long message, but for some reason it is not letting me post it This is the error I keep getting - I connected to both applebees wifi and my hotspot on my phone, and I keep getting the same error ! 403 Forbidden A potentially unsafe operation has been detected in your request to this site. Generated by Wordfence at Thu, 9 Aug 2018 21:25:58 GMT. Your computer's time: Thu, 09 Aug 2018 21:25:57 GMT.
  11. Hey Jon - I understand, I will not screw with the dosage and/or pill! Lol. And yes, I definitely want to stop it. Had one last night and one today - both succesfully aborted with caffeine, though todays took about an hour to abort; which sucked; but it only got up to about 5/10 on the cluster scale (which I consider about 9/10 on a normal headache scale - could have gotten MUCH worse!) but I caught it a bit late becuase I was napping. And hey man, it's never too late to get out there! We've got a 81 year old guy in our group with one eye and he paddles class V and waterfalls like it's his job! Also have a few 60-70 year old paddlers that picked up WW in the past few years/months and absolutely love it. And that is such a beautiful story about the celebratiion of life. I've heard of similar. I've never been a part of one, but I would gladly love to be a part of one - if it were for my headaches. As in, if they were killed off! Ha. CHFather - thank you for the answers and detailed information, much appreciate it! Learning the jargon little bit little and doing more reseach everyday and learning lots! And I know everyone has told me that caffeine wont prevent them but...I have noticed that if I injest caffeeine ALL throughout the day, either caffeine or tea, I do not get them. I notice that if I take excredrin with caffeine before I sleep - I will not get a headache in the middle of the night. Is this preferred? NO! Not by a longshot, but it has worked for me. But, seriously it is not preferred at all. I'm already a pretty energetic person and the days when I am artificially sped up; I feel like I',m on some drug that I'm not supposed to be on and my body is going in 3 different directions. But, oftentimes; it can be better than having 1-2 clusters a day.. Anyhow - I will Definitley look up the indomethacin and ask my doctor about it. Thank you again and have a great day everyone
  12. Thanks Jon much appreciated. Looking at the bottle they say "Verapamil 240MG ER Tab GLEN - Generic for CALAN SR. So that ER probably does mean they are extended release, yeah? Should I break them in half or crush them up? Not recomennding to do anything silly with them, but perhaps if I chewed it instead of swallow, would it hit me quicker? And thanks for the heads up as far as not expecting anything immediate. I have 30 of these bad boys so we'll see if I notice anything.. Not sure if I'll be going in for a ECG beforehand, but I'll keep mind of my heart over the next few, for sure. I hear if that goes, I go too! ps. We oughta meet up at the cabin one day! I also believe that paddling is the best form of non-motor travel! Have you ever done any whitewater?
  13. Holy hand grenade batman. Is this true?? Lol. I am on my first cluster experience for the first time in my life. I am 31 and I have been getting them for 45 days straight (besides 4 days on steroids). I am actually coming down from one now right now ha. But I would love to experiment with this stuff and see if it works. I would duct tape a bottle of that stuff to my thigh if I had to. I would also be open to trying all of the crazy things that you tried as I was headed there myself.. Off to do some research and thank you again!
  14. Short note - The doc prescribed me verapamil. I am supposed to take one 240mg pill at night, thought I am thinking of taking one now... I don't have a headache but I am eager to measure it's effectiveness and eager to get off caffeine... Thoughts? She had also said that I should visit a neurologist and gave me the listing of a headache specialist in the area that I will surely check out. Also said I should visit a dentist as it's been a few years. I've had my jaw broken about 10 years ago, and I've read and heard some things about TMJ and cluster headaches as well...although I have never been diagnosed with TMJ; though I do clench a bit at nighttime.
  15. Hey thanks everybody for the support I really really appreciate it. Some really great ideas here and I'm going to set aside some time today to read up on the D3 regimen and see if it's something that can help me. I'm 100% up to try it either way. Also, Jon the Zomig sounds pretty righteous. You use that exclusively now? Does it just "bust" the headache or keep them away for any sort of time ? As I've mentioned I've been "medicating" with caffeine mostly - got some sugar free red bulls yesterday and a few starbucks coffee shots. Drank one when I woke up at noon, and then drank unsweetened iced tea all throughout the day. I honestly felt great until about 10pm when I felt a bad headache coming on. I then drank half a red bull and a little bit of coffee and the pain dissipated within 20 minutes or so, which was good - but then I was up till 5am! I then took 1 tablet of excedrin tension and went to bed until about 11am. Real quick - I know that pills can tear your stomach up, but the excedrin tension that ONLY contains acetaminophen and caffeine - that's not as bad for your tummy as the regular excedrin right ? The O2 sounds interesting and I would be willing to try, I'm just not sure if I can keep that up lifelong as I try to be as active as I can. I guess I could take it with me camping and my long car drives but it seems like a lot. But this condition is a whole lot and I am willing to do anything to seek relief ! Also a friend of mine did give me a few topamax pills and a sumatriptran injection box, and I havent taken any of them. His wife has MS and said it helps with her headaches heavily. Thing is, I've read about the effects and seems they can be pretty severe. Obviously I'm the kind of guy that would rather smoke a joint, flap my arms and pray the pain goes away but...perhaps I'll shoot one in my forehead tonight ! Joking of course ;) Also a doctor friend of mine had said this when I was texting him today - "Sounds like your symptoms fall into a diagnostic group of diseases called Trigeminal Autonomic Cephalalgias (TACs).The five diagnoses in the group are: 1. Cluster 2. Paroxysmal hemicrania 3. SUNCT 4. SUNA 5. Hemicrania continua Even if the symptoms are textbook and diagnosis (usually by a neurologist) is made, treatment can be difficult to get “right” Another diagnosis in the group is called hemicrania continua and responds to a drug called indonethacin (basically ibuprofen) - also prescription Well if we’re going with CH - which I think is right - it seems that the best place to start is a triptan" So I'll be researching that information today as well. But topamax and sumatriptan are...triptans right? Anyhow - just wanted to give you guys an update, thank you again for all of the kind and heartfelt replies! I am in the doctors office now (normal doc not neurologist or headache specialist), and will relay all of this information to her as well and let you know what they think ! Have a great day all and be well! Ps. Will be researching CBD oil and the poster you mentioned thank you for that!
  16. Thanks for the good vibes Jon, much appreciated! Love your setup and glad to meet a fellow paddler, maybe I'll see ya out there one day!
  17. JavanHead

    Newbie far away from home

    Hey Sunil, I am 31 and I believe my clusters started for the first time ever about 5 weeks ago and I am still in them. The redbull/caffeine has definitely worked for me, and I too share your feelings in being afraid to go to sleep. I find that smoking marijunna helps counteract the caffeine, and I am searching for a better and long-lasting alternative. I will let you know if and when I find one. And, I share your thoughts - EXACTLY when it comes to appreciating the small things in life ,and being able to breathe and move and think clearly and happily without having a headache. Definitely going to improve my appreciation all the way around. Sending Love <3 -Javan
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