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- Today
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Henke joined the community
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It has been since January 15, 2016 (More than 3 years) that I started taking the V-D3 regime and not a single CH episode since then!!!! Best of luck to all of you
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Hey are you still in the military, I saw your post, and I was wondering, how do you maintain your pain free status if you’re deployed overseas? Also, how did you pass medical if you were prescribed medicine for headaches? Sorry to bombard you with the questions, I’m just curious
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Almost always feel super hot, I'm not normally a sweater, but sometimes I'm ripping cloths, socks off.
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B1uesky joined the community
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I just bought two 16oz cans of spike energy drinks because they have 350mg of caffeen and they were 2 for three dollars at the 7-11 store. Anyone try these yet? I usually stock up on monster low carb but these look more potent.. I might only need a few sips if it's twice as strong..hoping do get my abort time below 15 mins I'm averaging about 30 till I can return to bed.. also besides red bull and 5 he shots and coffee do others have a certain brand the know helps?
- Yesterday
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Usually busting is using mushrooms, LSD, or seeds.
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Successful reduction of headaches with diet update
johncluster replied to johncluster's topic in General Board
I am not stressed, and I wake up very optimistic hoping yesterday was the last day with CH , until I finish my food,,and 1-5min later It is coming on , I've been on potato only diet for about 5-6 days,,but I've been on a very strict diet: no processed food, no fried food, no sweets,,for about 1.5y with a great sucess, until about 10day ago,,, -
Successful reduction of headaches with diet update
Milelli replied to johncluster's topic in General Board
Since how long you are on that potato diet? Usually it takes some time to start working. Indeed the second after you finish the meal is very early. Usually one can consider at least 30 min to get the substances from your stomach to your bowel or even more, I am not an expert,, I know that stress also releases the histamine (and I guess the same applies for tyramine and other biogenic amine) from mastcells into your body. So since this diet really seems to helped you, the first thing is to dont't panic and to reduce stress! Maybe the strict diet will bring you back on the track. I am sorry but this is currently everything I come up with and I know it's not a big help but I ask me the same questions everyday. Cheers, M -
bb1283 joined the community
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If Oxygen and triptans work is it 100% CH?
johncluster replied to johncluster's topic in General Board
I,ve had the scans, tests and everything done 12y ago or so , when it all started,,they said CH But Why do i get a CH right after eating? It has always been like that,,except a certain periods where I didnt get CH at all, no matter what I ate. Salad, plain potato,,plain rice,,apple,,,doesn't matter anymore,,the second I am done, the attack start,, after the first attack ,,,the second or third daily and night attack comes regardless of me eating anything...but the first CH of the day is always 1min -5min after finishing any meal. But I have a tread in progress in regards to CH and diet. thanks for any help. -
Successful reduction of headaches with diet update
Freud replied to johncluster's topic in General Board
Milelli, below is a link to a post I made regarding alternative methods to grow mm that are a lot easier. If memory serves me correctly you don’t live in the states. The suppliers I have listed are all in the states. If you live in Europe there are several reputable sites out of the NL that sell smallish tubs that are already colonized and growing is extra simple. Let me know if you want more info on that. Mad for growing I think the methods explained by WillyMyco in his videos are a bit less cumbersome and have better yields than the videos you previously watch (the PF Tek, aka BRF cakes). It’s just my opinion others here have great results using that method. I buy all my supplies ready to go (sterile or pasteurized depending on the product) so I eliminate a huge source of error and contamination. So everywhere where Willy refers to making ryeberries or bulk substrate don’t stress it you can just buy it. Let me know if you have further questions, start a new thread in the theory and implementation section. Here is the link to my post: https://clusterbusters.org/forums/topic/5874-alternative-grow-methods-for-mm/?tab=comments#comment-58716 -
Successful reduction of headaches with diet update
johncluster replied to johncluster's topic in General Board
I am currently on potatoes only diet, and the minute I finish my meal , the CH comes,,,,. Even my potatoes only diet that used to work , stopped to work 2 days ago. Why does CH comes the second I finish my meal? Any ideas? What should I try next? green salads only? rice only,, I am running out of options here,,if this continue I will lose my job for good. I can't keep taking triptans daily and keep breathing O2 on the job ,,,thanks for any help. -
Successful reduction of headaches with diet update
johncluster replied to johncluster's topic in General Board
The problem with busting for me is the complicated process or growing it. I watched those 4 part youtube videos, recomended on this website , but the process seems so complex, that I would not be able to follow it I think. way too many steps for me to follow. -
any success stories of being CH free for good?
Jimmy Martinez replied to Jimmy Martinez's topic in General Board
Thank you both for your responses! I'll be sending prayers to you and all CH sufferers for the rest of my life. Hopefully there can be a cure one day soon. -
Successful reduction of headaches with diet update
Milelli replied to johncluster's topic in General Board
I am very sorry to hear that! I myself have found release by avoiding histamine. Did you eat something or somewhere else than usually? Maybe there was a hidden trigger. Cheers, M -
If Oxygen and triptans work is it 100% CH?
Siegfried replied to johncluster's topic in General Board
Hi John, As told by Pebbles, you should for sure get a brain scan if you did not had it already. If the scan is negative, then you can indeed be fairly sure that is cluster headache. If you also restless during the attacks, that is an additional factor that points strongly to CH. As far as I know, triptans only work for migraine and CH. Not for other types of headaches. And for oxygen, I had both conditions and I can assure you that O2 works wonders for CH but does absolutely nothing for migraine. Another candidate is hemicrania but your response to triptans make that exclude as well. Now for what the videos concern, I would take these with a big grain of salt. Of course nobody will make a CH attack video just showing up and saying, "Hey guys, I am having a CH attack and it hurts a lot !!" while just sitting there and doing nothing. The goal is to show they are suffering and that CH is a terrible condition so they will only post their worst and most spectacular attacks. But don't get me wrong... I am definitely not saying these attacks are not real. If you want to have a good view of CH intensity, you can have a look at OUCH Australia. They have lots of public headache diaries from their members there and it's very interesting to consult them. What you will remark is that the rather lighter or moderate attacks are more or less the norm and the really heavy attacks (KIP 8-10) appearing less frequent as one should think. Of course there are many people for which it's really bad, I know that as well.. but that does not mean that if you not always screaming and running around like a wild man during an attack it is not CH. Myself, I have only 35 % of the attacks over KIP 5, all the rest is under. And the heavy ones I can handle it quite well because I know how to deal with the pain. I am fearing the migraine attacks much more. Luckily I do not have them anymore but they made me ill like a horse. Take the worst flue you can imagine and double that... The feeling of nausea with the photophobia, I absolutely couldn't stand it... and that was going on for 48 hours. On the other hand, the problem with CH is that it is there nearly every single day. Today, on CH awareness day, I finally have once a super good day, the first one of the month - so for me it can be CH awareness day every day Best Regards ! siegfried -
Hello All, Hoping to get some advice on what I'm currently experiencing after having tapered off of Prednisone recently. I was on Prednisone for 2 weeks, starting off at 80mg for 2 days, then going down to 60mg for 7 days, then 40mg for 2 days, then finishing out with 20mg for 2 days. I took my last pill on Tuesday and felt fine on Wednesday. However, on Wed night, I started feeling body aches and then my whole body broke out into hives. The hives don't hurt or itch and aren't really raised, but they're red and angry and all over my chest, stomach, face, neck, and arms. My body aches also got to a level where I could barely soap myself in the shower because my skin was so tender - it felt like a sunburn. Today (Thursday), I woke up feeling foggy, nauseous, and very weak. The hives and body aches are also still there. Upon googling a bit, it seems like I'm experiencing Prednisone withdrawal symptoms? Has anyone else experienced this? I tapered off according to my doctor's recommended schedule. I contacted him today and he shut down my theory, saying that it cannot be the Prednisone, but I can't think of what else it could be, as no other routines have recently changed in my life. My question for those who have experienced something similar - how long did these symptoms last for? Should I get back on the Prednisone? I would rather not, as the side effects were absolutely awful and I was eager to get off of the meds. But these new symptoms I'm experiencing aren't all that great either.
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Successful reduction of headaches with diet update
ThatHurtsMyHead replied to johncluster's topic in General Board
JohnCluster, Sorry to hear you're back in the throws of the beast. A low tyramine diet should definitely help reduce your attack frequency and intensity. Busing is definitely the best cycle terminator around. PFW, J -
If Oxygen and triptans work is it 100% CH?
Pebblesthecorgi replied to johncluster's topic in General Board
Might be. Cluster headache diagnosis is based on symptom criteria and the absence of another diagnosis. This is why imaging (CT or MRI) is ordered once, to be sure there is no brain lesion contributing. -
Successful reduction of headaches with diet update
johncluster replied to johncluster's topic in General Board
there goes my diet theory ,,well I had a good run for 2y,,,,why is that every time you figured it out it stops working. CH are back even on a diet -
I was told by doctors that i have CH,,my symtoms are there, just my pain is nowhere as bad as people are showing on YT channels. They says the worst pain you can ever experience,, but I'd say my was like 7/10 Also triptans and O2 works with pain reduction . Could that be something else?
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Hotheadred joined the community
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Cluster Headache Awareness Day 21st March 2019
Tony Only replied to Tony Only's topic in General Board
https://www.facebook.com/permalink.php?story_fbid=279494592943894&id=268218244071529 An open petition for the people working in the healthcare industry involving patients with Horton’s syndrome We hope that the term “headache” would not be used when dealing with our disorder but rather some other expression as part of the name of our condition. Using familiar "cluster headache" may build up to not understanding condition and expression like "it's just a headache". In our patient files Horton’s syndrome or Horton's cephalalgia can be used. Horton’s syndrome also has a nasty nickname; “suicide headache”. This rough sounding name is an attempt to express the severity of our condition. This is not a headache or just a head pain. These are seizures originating from the brain that leave patient alone to overcome the physical and mental traumas from these seizures (attacks). English term “an attack” is very fitting, and since we feel the pain of these attacks in our head region, some use the term “head attacks”. But only when you start to think these seizures appearing like physical attacks; someone repeatedly attacking you when no one can see - you start to realize the amount of fear many patient constantly live with. The “attacker” in Horton’s syndrome is an invisible shape; it breaks the patient because it feels like it’s stronger than you, it comes back again and again, it arrives by it’s own schedule and nobody even knows what is happening to you. Patients can actually be afraid to go to sleep, because sleeping is an usual trigger for an attack. At some point when this condition has evolved to being severe enough, many of us are ready to do absolute anything to stop these attacks from happening. In healtcare industry the better understanding of Horton’s syndrome and patients surviving with it will improve the management of this condition and also decrease the burden from people working in healthcare - it is an advantage for both parties. This text can be freely shared anywhere as long as it’s shared in full. Tony Taipale Patient with Horton’s syndrome #hortoninsyndrooma #CHAD2019 -
Hi Batch, I was on the clusterheads sub reddit, and an indivdual made a post where his blood tests showed a toxic amount of d3 in his body, he has since stopped using the regimen and contemplating the use of magic mushrooms. My question is, what happens when your d3 levels are too high to the extent where it becomes dangerous? Is it possible to take a brake from the regimen and wait for your levels to return to a safe level and then resume the regimen?
- Last week
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Chels changed their profile photo
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gmichalopoulos changed their profile photo
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gmichalopoulos joined the community
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DM I have been on Verapamil for about 5 years now. I was at one time taking 240 3 times a day of the slow release. I changed over to the fast release and weened myself down to 120 one time a day. At this point I feel it is having the same effect as the 240 3 times a day was if not a little better. I have tried to stop taking it all together in the past and the shit hit the fan with clusters all day. I try to change things up with busting, D3 and verapamil to see what works the best for me. I add things like drinking ginger tea adding benadryl and melatonin to the D3 regimen. I will stop taking one thing to see if it makes any difference and I do this a few times a year to rule out any coincidence with the timing of me stopping any one thing. The bottom line is that it all sucks but you need to try all different things and stick with what works for you. My feet get numb from the verapamil but it is better then getting hit with 6 clusters a day so I stick with it. With my current medication plan I am getting 2 to 3 pain free days a week and that is something I have not had in a few years.
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TonyScotland joined the community
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There was another user that reported great success with verapamil. I asked a broad question about verapamil help/didn’t help. Got few responses but most people here are here as a last resort. And have exhausted most options.
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I think my beast is still young and not yet as fickle as most. I will cherish these days benefiting from verapamil while they last.
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Sorry my mistake, I talked about the CH getting worse if I weaned. I know the verapamil wasn’t stopping my daily 3 CH and my CH got worse the further I got from my last bust. Now I’m getting woken up 2-3 times a night plus my daily attacks. I was on 800mg and I’m confident I can’t tolerate more and it wasn’t helping. Instead I’ve decided to detox off my depakote (another blocker 5 day detox) then bust with L or M. I’m also waiting for an injectable I was on to wear off bc it’s a blocker too. But I’m trying a month early out of desperstion.
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To clarify, I'm attributing all of the issues I listed above, to the beast, not the Verapamil. So I theorize that, in my current state, if I were to stop or ween myself off the Verapamil, then the beast would have free reign and things would get a lot worse.
