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Everything posted by maskedmarvel

  1. Aaaanyways I'll probably be turning of notifications for this thread now. Wishing everyone the best
  2. So based on what I am reading on pubmed etc, going from episodic to chronic is pretty rare. Idk, it also kind of seems like anyone who is prone to headaches around this time (including a friend of mine who gets migraines) is having a particularly difficult month.
  3. Yeah sometimes.. That and I also keep hoping that based on my past patterns I can reasonably expect this to be over soon since we are coming up on 30 days.. I had one that wasn't too bad on Friday but it lingered around for about 4 hours which is not usual for me.. Find myself wondering what that might mean and I am also unsure about how taking MM again now might affect the rest of this cycle.. I spoke to Dr Gawel today and he recommended I not take them again and let it run its course unless it gets really bad again Kat, I am in total awe of the strength that chronic CHers must have.. For what its worth there are no more courageous people anywhere on earth. Also wondering if there is a CH charity or some way I can give back to this community.
  4. Thanks Kat I did in my other post... My cycles seem to come just short of every 2 years.. Times when I didn't know what it was and it was left unchecked IIRC lasted about a month. Last time, when I found this site, it lasted less than 20 days and I used MM 3x.. I have been on the vitamin D protocol for about 2 weeks now (was helpful last time too). This cycle started some time near the end of September. I have taken MM 4x about 5 days apart. Last time I ate MM I had almost 6 days of no attacks but got some border line shadows.. Since then I have gone about 24hrs between attacks and had a pretty mild one early this morning after almost 36hrs.. I am hopeful that it will be over soon since they seem to be getting weaker and further apart. The nature of the cycle, how to know if its almost over is hard to understand. I spoke with a doctor on the list here, Marek Gawel last week and it wasn't super helpful. The conversation was about 10min long, I forgot to ask about oxygen and he didn't even mention it... Just what pharmaceuticals there are which I probably can't afford anyways. I am trying a different neurologist as soon as I can next week. Based on my previous pattern I am hopeful that this cycle is over soon. When i asked dr Gawel he just said its over when I don't get shadows anymore which is like saying its over when its over.
  5. Sorry for making yet another topic.. I'm sure to chronic CHers I must seem like a drama queen. I had almost 6 days free of attacks (scary shadows on days 4 and 5 though) after eating MM for the 4th time.. Then had an attack this morning. I'm out of MM and am just feeling so disappointed and uncertain now. My last episode only lasted less than 20 days thanks to info I learned here.. Its now been at least about 25 days for this cycle.. Previous cycles when it was left unchecked seemed to last about 30 days maybe. Trying to tell myself that this has to be over soon based on my previous patterns. Just wondering if anyone has any advice on what they tell themselves during uncertain or difficult times.. Thank you
  6. Been taking about 3-5000 IU per day for most of this year.. Started taking 10,000 IU after reading this. Its been over 72 hours now and still feeling good. Talked to Dr Gawel.. The call lasted about 10min.. Basically just telling me what pharmaceutical options for busting exist. He asked me where I got my mushrooms lol... I asked when I can know the cycle is over and he just said when the shadows are gone. I can be a bit of a hypochondriac and it seemed like I was getting shadows for weeks after the last attack last time... Last episode lasted about 3 weeks and I also didn't go 72hours without getting one unless it was the end last time.. Just wondering if you might be able to offer any reassurance or advice regarding how I can know its over.. I took mushrooms after the last one and didn't seem to get a slap back.. I have had neck tightness through out my life and during an attack i get a big knot in my neck.. I felt my neck getting tight this morning and got really scared, but I distracted myself with something on the internet and it went away without an attack. I forgot to ask about the bloodwork
  7. Episodic and seem to get them every 2 years or maybe a bit less. Started late September.. Was fairly mild for the first week or so.. Ate mushroom near the start when I wasn't sure if it was the real deal or not. .. and then ate them on October 6th and 11th.. I thought it was maybe over a few times.. Had a slap back(?) On the 13th and only a couple very mild ones about 24 hrs after that.. Felt like I was in the clear yesterday. Then woke up with one at around 1:30am that seemed to escalate slowly.. It honestly still hasn't really left now 4 hours later. I have an appt to see Dr Marel Gawel from the list here but not until Monday.. I did try some fascial release therapy yesterday that seemed to really help at the time (and seemed to help last cycle) but maybe there was some sort of rebound effect? Also been experimenting with Wim Hof breathing when I get an attack.. Seemed to help sometimes but maybe that had something to do with this one lasting so long? Its just been more lingering for the last hour or so... Going to try and see if Dr will talk to me please sooner since Monday seems like an eternity from now. I'm scared. Most of them this time have been fairly mild. Last cycle lasted less than 20 days.. Previous ones (IIRC) before I found this site would last a month.
  8. Yeah in this most recent cycle (please be over soon) I have been doing the breathing when I get an attack... Seemed like a Miracle sometimes and others not so much... I think the execution matters... I have found that when i really wait those extra seconds to breath and push my limits, the pain goes away and the level of the attack stays lower.. Are there any negative effects of doing the breathing too much? I have been "saving" it for when I get an attack rather than doing it regularly in the morning etc.. Would it be better to do both? Also wondering if it can change the length of the cycle at all for better or worse.
  9. I was asking about the article, but you'll probably have to actually read it if you want to form an opinion on it .. or at least hear the premise of it. Like I said, it proposes a theory of why clusters happened and compares them to earthquakes on the earth. ELDOA is a lot more than just a vagus nerve stretch.. or stretching in general. MELT Method, Feldenkrais, and other methods of releasing chronic tension (something almost everyone lives with now and considers normal.) have become a way of life for me and I feel pretty sure its had an effect on this situation. Its common for a person these days to breath with their chest neck and shoulder muscles (for excample) their entire lives. can't see any other reason as to why this cycle has been so much easier than the last because I have been regressing in areas like regular sleep, caffeine intake etc in the last 2 years. Maybe elaborating in the theory and implementation section would be a good idea. I am not saying these are magic bullet cures.. Changing posture and reducing tension are gradual processes.. My CH didn't develop overnight and I am not saying these will change things overnight.
  10. Its such a difficult thing, please don't beat yourself up.. I am not married and have no advice but I just wanted to say I feel for you and wish I could help
  11. Ok thanks.. I was thinking like, what if my cycle is over and I eat some.. No evidence for that just being paranoid i guess
  12. In the last sentence of my post there, I was referring to the hypothesis of what causes CH, not cranio sacral therapy as a cure.
  13. Episodic and last time I had shadows and thought i was going to get another one for at least 2 weeks..
  14. Hello, I seem to get them every 2 years or so... Last time was Christmas 2018 and about a week ago I woke up with a headache that was in the ballpark of a ch.. I just went 27 hours without one and it was less intense than the previous ones.. I ate a small amount of mushrooms about 5 days ago out of "an abundance of caution" which i guess helped. Not sure if I should eat shrooms again.. Has eating shrooms ever made them come back again? Probably just me being paranoid.. I am also worried that this might be some kind of mini episode and it might still happen again around Christmas.. Is that realistic? Overall its been much less intense than my previous episode. I am hoping it stays that way. Over the last 2 years or so I have really changed my body as far as carrying tension and posture etc. I use a type of stretching called the ELDOA method which has an exercise to create space between the top C vertabra where the Vagus nerve exits from. What are the general thoughts on this article? http://www.whitetigernaturalmedicine.com/craniosacral-therapy/cluster-headaches
  15. Geez.. 48h without one. I just woke from a weird dream where I was crying uncontrollably.. I woke up with a 50% headache.
  16. Thanks so much everyone. I am now pretty much headache free for over 24h. I had a small one later on yesterday.. Today I actually feel pretty good and even went out and watched a little tv this morning. I am glad you told me that about fermented foods since I like kombucha and thought of having one. I have been eating fermented vegan protein bars but luckily they did not seem to trigger one. I don't feel quite out of the woods yet and am still taking it easy. Thanks to clusterbusters this is sooo not as bad as the last time I got them. Its been less than 2 weeks since they started and I feel like I'm turning a corner. I feel some traces of a headache here and there but its not escalating. I am going to wait 5 days since the last shroom dose and take them one more time. I have been taking cbd oil 2-3x per day since Saturday and I think that might be helping as well. Hopefully I'm on my way out of this and can be someone who can help others with it. I am seeing a lot of lists of trigger foods.. And am wondering what actually is ok to eat.
  17. Thank you so much. Someone told me today that thier dad had cluster headaches and it was related to a liver thing. Have you ever heard of that? I was once diagnosed with a slightly large liver but a follow up test was deemed "not worrisome". I am unable to find any info linking CH to liver function.
  18. Hello I have gotten these for about a month in 2012, 2015, Feb of 2017 and now starting about a week ago. This is the first time that I really know what it is. The day before I got them I was drinking a few beers with friends. I rarely ever drink but have a history of smoking weed a lot and depression.. I am sort of kicking myself now for being depressed before this as I feel like if I could just be free from CH I would be so much more willing to accept what life brings. My sister happened to have shrooms so I ate them here and there on Christmas morning from 10am and had the last bit around midnight. Boxing day I got a couple but they were only about half strength. I thought I was good to go on the 27th but I learned the hard way that cheese can trigger a headache.. And trying to smoke weed that day kind of brought them back a bit as well.. They were milder until yesterday morning.. I went and got some cbd oil. I have been taking the cbd regularly and they seem to be keeping them at bay but I still feel traces of CH and am afraid to do anything. I took shrooms again yesterday evening and it seems like I waited long enough (3.5 days or so) because I felt the affects of the shrooms.. However they were less effective on the CH this time. If anyone can help me "bust this cycle" I would be very grateful. My heart goes out to people who have gotten them more frequently than me. A few insights I had that might help others.. If you are getting one do not curl up in a ball or sit holding your head etc.. I find walking outside while breathing deeply into your lower abdomen makes it a lot more bearable. Maybe this is old news, or maybe some will disagree but I am certain chronic tension is playing a role here. In my early 20s I started getting pain\discomfort in a specific area\pattern on the left side of my neck. When the headaches started it was almost like the familiar neck pain had mutated into a painful headache following a period of great stress. I have spent a lot of time over the last 5 years or so doing a lot of stretching and self myofascial release (foam roller, lacrosse ball etc) and I feel like that might account for my relatively low frequency of CH over the years. Recent discoveries in fascia "fascial research" has shed light on a lot of physical issues. Searching for Tom Myers on youtube would be a good place to start.. Also a book called Move Your DNA by Katy Bowman really opened my eyes on how our bodies adapt to our "mechanical environment" (how often we sit or do repetitive movements etc).
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