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  1. Check the links in the description Cluster headaches are one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide in order to escape the pain. But psilocybin and related substances can provide dramatic relief for many patients. Help them get their lives back. Support legalising access to psilocybin and related substances for the treatment of cluster headaches. More information here: https://www.preventsuffering.org/clus... Read our November 2020 policy paper "Legalising Access to Psilocybin to End the Agony of Cluster Headaches
    7 points
  2. It does suck.. Welcome to the club! Like yourself we have all gone through this same type thing. You will find people that have had teeth pulled, nerves cut, tried all sorts of different medications and a few operations done to try to solve this. You will want to read up as much as you can here starting with the link that CHfater sent you, get oxygen as soon as you can to abort your attacks try a 5hr energy drink at the first feeling of an attack coming on can help buy some time and sometimes abort the attack on its own. read up on busting and the Vitamin D3. Oxygen is the best treatment for
    4 points
  3. WOW. I never thought I'd see this in my lifetime. It's one step closer for those of us with CH being able to get medicines from a doctor that actually help stop our CH.. It looks like there's a lot of bureaucracy wrapped around how they'll manage it, but I'm sure it'll get easier once the magic spreads (ha ha, just made that one up). https://www.kgw.com/article/news/politics/elections/oregon-becomes-1st-state-to-legalize-psilocybin-for-mental-health-therapy/283-4103d1ba-9d9a-4dc0-9970-6f8cc1288323 Love all, J
    4 points
  4. ....been both episodic and chronic.....the fear of changing from one to the other was constant and oppressive...then it happened and i learned it's really the same beast in different form... and strategies must and can be adjusted. there is ongoing discussion on which is "better"...i could make arguments on either side...but it really doesn't matter cuz ya don't get to choose. personally, upon reflection, i think the basis of the fear was "change". had a similar gut wrenching fear of hits changing side...why would that be "worse"?..dunno and never found out. ...the beast is hard enough to
    4 points
  5. Yesterday I heard from my neuro that SUN is working on a 3mg auto injector next to the normal 6 mg. Might be a possibility for folks that now have to split the 6 mg auto injector manually. Keep you posted on when it becomes available, here in Europe-Holland. All the best
    3 points
  6. Mine is awesome... my other half. I'm 6 going on 7 years chronic... only a break for 2 weeks here and there If I'm lucky. O2... your friend. My spouse gets me a roll if toilet paper... pillows to sit up in the bed... sets up the couch in case I pace... I'm more of a rocker. Gets me a cold pack, some water my energy drink and leaves unless I try to communicate. This did not happen right away I had to tell him over and over there's nothing he could do. He knows now it'll be over... then it's back to regular life when I wander out whipped by the demon... but smiling with mascara runnin
    3 points
  7. It is hard on your body. It might cause bigger issues down the line. Many reasons to limit the drug. Triptans can do really bad things to your heart. So, too many, is too many. There are better ways to treat your head actually. Please type 'D3 ' into the search bar at the top of the page. A really great way to get relief without sacrificing your body. It is just vitamins and very safe. Good for you stuff. Triptans are not good for you. That is why they are limited. Read the 'New Users' Banner at the top of the page for other info. Welcome and we are here to help!! <3 Read,
    3 points
  8. I just posted myself that I'm so done. I'm 6 plus years and chronic only max 2 week break... ever. I come here...I realize I'm not alone!!! Although most people with us don't know just how bad it is....I remember what I am and how strong I am and hang on to that. I hope you feel better soon!!!
    3 points
  9. Wow...yes! ...for many years now... from many sources I've seen that meditation (and other "mind tools") is useless for ch. sometimes the dismissal is aggressive. I find this to be short of sight and narrow of mind. meditated every day for every year I've had ch... didn't reduce or alleviate one single hit... but instrumental in maintaining my sanity and will to carry on between the hits...
    3 points
  10. Always been chronic, the frequency has simply changed for me, the fear seems part and parcel with ch, fear of the pain, fear of the next, fear it will be worse, fear when you get a longer break than normal because you think it will come back worse, fear a treatment will not work, fear it will then stop working. On and on they go, many of these are the same mind treadmills that you get with ptsd, I mean subjected to unimaginable pain for upwards of hours, to get a respite, knowing it is coming agai, sometimes with no rhyme or reason, sometimes fearing the simplest things could trigger.
    3 points
  11. Hello everyone! I'd like to introduce myself and talk about what I go through. First off, I'm a 46 year old male from Northeastern Wisconsin and I work a wicked "southern swing-shift". My work days are always 12 hours, being either 6am to 6pm (Days), or 6pm to 6am (Nights). My schedule has me working: 4 Nights, 3 off, 3 Days, 1 off, 4 Nights, 3 off, 4 Days ending with a 7 off stretch. Then the cycle repeats. About 4 years ago I was woken from a sound sleep by what seemed to be a headache. INSTANTLY. WIDE. AWAKE. I didn't know what was going on, seemed to me weird that a headache coul
    2 points
  12. Keep tabs on those randoms. There was a trigger that made them happen. If you can ID the triggers you can avoid the random CH and then get to work on the episodes.
    2 points
  13. Thanks Denny for sending me a note. Hi Fern. My doctor is Alyssa Lettich at Intermountain Health Care. 801-507-9800 at the hospital in Murray. I think she is good. Her first order of business will be to get you an O2 prescription. It amazes me the struggle many people have with that no-brainer. Appointments are usually a couple of months out. But, she tells the receptionist to get CH patients in immediately. Not all receptionists receive the memo, so ask them to check with the doctor and call you back if they keep telling you 2 months. I like that you're planning ahead. I ne
    2 points
  14. ....agreed with everything Pebbles said...doubles or triples supply therefore lowering cost, side effects and rebounds. the tiny insulin needles are less scary (tho not to everybody) and painful compared to the stat dose....and if prefilled, just as convenient (i used to carry such in a stat dose sleeve). until i found zomig ns to be superior in all aspects (save price) this was my last resort abort... ....insurance companies should actually be pushing these for all the above reasons.... but seem ignorant of the product in multiple ways...which is bizarre since the money aspect alone seem
    2 points
  15. You will find it more cost effective and less painful to just get multidose vials and draw up yourself. You can get 2-3 doses per vial using a TB or insulin syringe. There is considerable cost savings with the vials if available and for some reason that prescription sometimes skirts quantity limitations insurances impose. You can bet there will be no savings in a reduced dose auto injector.
    2 points
  16. Hi VaderXanth, That sounds terrible ! And it is a terrible story ! I always think this must be one of the worst. People that never got a headache before in their life and then at later age, suddenly get episodic or chronic CH and have do deal with this entire mess from the one day to an other... "from zero to hero..." I am sure you will find your way with the support and the help you will get here. CH father gave you a good starting point. All the best ! siegfried
    2 points
  17. It most certainly is 'okay'! I know that many here have suffered the same angst that you are going through now. We worry till it shows and really worry if it just teases us with shadows. You have your appointment set for December? Very good. Now, just mark the days off on the calendar. The threat of a cycle can be horrifying. On the other hand, if it fails to show as expected, we are a nervous wreck! I don't think that numbing works. Or perhaps not for me. I keep the meds simple to fight with. Are you doing the D3 Regimen? Have you done it? It can provide amazing help for CH.
    2 points
  18. When it showed her on oxygen with tears coming down her left eye my left eye dropped a tear!
    2 points
  19. I'm glad you've found something that helps you @Kenny scott, but I am in total disagreement with your view of the efficacy of cannabis in the treatment of clusters!! I know entirely too many clusterheads for who cannabis is a trigger, and I know many more like myself who aren't triggered by its use but who find zero help from it either. Dallas Denny
    2 points
  20. Hello, Clusterheads. It's been a while since I've posted here, maybe 2 years, and I think my last post was a pretty negative one. Just wanted to check in, let everybody know I'm still alive and well. Hope you're all living the best lives you can I finally kept a journal throughout an entire cycle. I've tried this many times before, but always forgot to notate so many of them that I would just give up and say "maybe next cycle..." Last April I began a 2-month cycle, shortly after moving to a different state... so I didn't have access to my usual solution at first. Well now I do have
    2 points
  21. .....30+ yrs here...hundreds of tanks used and thousands of hits aborted....and the ONLY negative was an occasional dry nose...
    2 points
  22. ..hi Dogo..welcome! ....google an image for trigeminal nerve...any and all areas it serves may hurt before, during, and/or after...my oddest aftereffect was that my hair hurt....and i'm mostly bald... ...i'll second chfather's oxygen suggestion....and supplementing with energy drinks or a strong caffeine drink FAST at first sign of a hit helps many.. ...note that vasograin contains caffeine so that helps...but it may be affecting sleep and a need for sleep aid...have you and your physician discussed melatonin...many find it helps with night time hits... best jonathan
    2 points
  23. Consider welding O2: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
    2 points
  24. Thought I'd provide an update - you all have really helped me with this cycle! I was really dreading it since I was no longer able to use the Imitrex, but with your help I've learned how to use oxygen effectively and can now get it at reasonable price and not worry about rationing it or running out. I got the large tank rigged up with Batch's Redneck Reservoir Bag and haven't needed to buy the 25L regulator for it. I also started the D3 Regimen about 12 days ago and it's helped to dramatically reduce frequency. Only getting about 1/day about 6:30am which is easily knocked out with the O2. It's
    2 points
  25. There is a lot of misinformation about cardiotoxicity and triptan. Most of it is exaggerated. Adverse cardiac effects are largely single case reports and advise caution when using. Individuals who have had documented cardiac damage largely had pre existing predisposition. Of course there are always exceptions but the very vast majority of folks can use triptan with relatively safety. The rationing of triptan comes from several different directions. First it is primarily a drug for migraine headache. Providers feel if you are needing to inject more than 4-6 a month you should
    2 points
  26. ...hi Mezzo...welcome.... ....most find that 2-3 mg of suma is plenty to abort a hit so if you hack the stat dose you can double or triple the effectives doses and avoid the HAMMER that is 6 mg...not sure if available anymore but there used to be vials where you could draw up and inject with insulin needles the amt you need...ask your pharmacist if these can be obtained... ....at one time i obtained 18 doses/mo by way of a letter doc wrote to insurance company...called a "letter of medical necessity" ...the phrase "intractable cluster headaches" was advised by an insurance broker as
    2 points
  27. Yes that is correct and chronic does not always mean you have constant attacks 24/7. Many CH'ers are labeled chronic with 1-2 attacks per month. Chronic just means there is no remission.
    2 points
  28. Get plugged into healthcare for oxygen and start the vitamin D protocol ASAP. Give more information on dosing past and present. hope to help
    2 points
  29. I wouldn’t be discouraged just yet! If the Mm don’t stop the headaches completely they might make them at least be tolerable. Try and see if you can find some more. We have all been here, that feeling of discouragement. I am chronic and I have had many depressing days just accepting this into my life. Just try to do what makes you happy any time you are pain free. This is a life long condition. There is no cure. Accept it and enjoy ANY pain free time you get. Kat
    2 points
  30. As a way to cope with this crazy disease, I thought it would help to imagine my Cluster Headaches as characters in a cartoon strip. I wonder how my imaginary "Cluster Boss" demon must feel when he's working on my cycle. Maybe he's as frustrated as I am! Just my perverse way to find some humor in this horrible disease.
    2 points
  31. This study is being conducted by Dr Emmanuelle Schindler who has been a speaker at several clusterbusters conferences and who also is conducting the psilocybin for cluster headaches trials! https://newatlas.com/health-wellbeing/psilocybin-migraine-psychedelic-clinical-trial-promising-results/
    1 point
  32. There is also D3. I started it last fall and then stopped. I don't know if I was part of a small percentage of people that have a bad reaction, or if it was a coincidence, but I had a big spike right then. I know it helps a lot of people. I started taking it again after my cycle wound down and still am. I'm hoping it may stop or delay the next one. Anyone else, do you take the D3 regimen all the time, in cycle and out?
    1 point
  33. Just read an announcement on the clusterbusters Facebook page for this conference to be held in Milan,Italy in May of 2022!! DD
    1 point
  34. Vader, I hope in your research you've at least become encouraged that there are treatments for CH, such as are outlined in CHfather's overview link, and also touched on by FunTimes above. Some of us really do find significant relief, and while there can be a bit of luck involved regarding who is going to respond to what, my money is on you finding your way there too.
    1 point
  35. Snowflake, Stay strong. I know those are only words, but you're in closer company here than you might realize. PFW, J
    1 point
  36. @xxx Thank you for this information to adjust the regimen. My change now will be: D3 - additional 50,000 for two days Turmeric - up from 2 pills to 3 Omega 3 - up from 2 to 3 pills Boron - adding 6 mg per day ( I have ordered this). Probiotic - ordered Zinc - ordered. Diet: I am stopping anything sugary to include foods with added sugar on the label, etc. Alcohol - two glasses of wine per day Water: 2.5 liters per day I have a lab coming up in a couple of weeks. I am using the specific products you listed. Thanks again. Let's see what happens as far as achiev
    1 point
  37. Hhh, I know, we know, that you are not a wimp. This beast is straight from hell and deserves to be sent back!! I am delighted that you have people who know your tell and mention it to you! They are good friends to have around. The change in time might be from moving off of Daylight Savings perhaps. Everything seems off by an hour. It used to throw me for a loop. The bulb finally lit up and I realized that 8pm last week is 7pm this week. Are your D3 levels at say 85 or above? You need to be at that level to reap the benefit of the regimen. You can PM XXX for information on the c
    1 point
  38. I have looked into the set up... it's the affordability of everything unfortunately. But I still plod along. I am nocturnal as well...9 ...930 every night. This week earlier which is a little different but so is the weather... that effects my demon. Truly the most break I get is 2 weeks, f#@k.. Im 6 going on 7 years same schedule. I accept it. I know it. I live it I hate it. He is a keeper. Although I apologize terribly the whole time and I know it kills him. I get my levels checked now and then and just stay on the regimen because it helps. I just hate it... I'm b
    1 point
  39. Dogo, you are playing around the edges of your CH. Get/do the stuff that works: oxygen, D3 protocol, energy shots . . . and plenty of other options. Whatever doctor prescribed the vasograin had a very limited understanding of CH. I suggest again that you click on the word here and read the file that comes up.
    1 point
  40. @Cast Iron, I was in the same boat at one point a few years ago. I finally figured I had nothing to lose and I spend a weekend locked in my room with no triptans and beat the shit out of myself all weekend. It was hell but I think it helped me in the long run. I now bust, do the D3 and have oxygen that I hit as soon as I feel that lovely sensation of a cluster coming on. I also always have a 5hr energy drink in my pocket to help the oxygen along and take a low dose of Verapamil. I was taking 2 and 3 triptan injectables a day and eating sumatriptan pills in between. I truly feel that all that w
    1 point
  41. Do not apologize. WE all need to rant on occasion! I cannot take trex in any form. But, you will find a paper on the site that tells you how to split those injections. You can get 2 to 3 doses out of one auto-dose. Most only need 2-3mg, not the full 6mg in the injector. So, that can be a huge help when you do need them. Many 'stockpile theirs when out of cycle to have enough for the next cycle. Building your arsenal is a good thing! You appear to be past the point of needing your O2, but we have a paper and many who will help you to optimize it for best relief. Neuros seem to just
    1 point
  42. To all, This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Center, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the c
    1 point
  43. Just received a message from the t shirt lady.....total of 49 shirts ordered.....$539 raised to be donated to clusterbusters!! DD
    1 point
  44. ClusterBusters is a tax-deductible nonprofit organization. You can donate here: https://clusterbusters.org/donate/ (For future reference, there's a "Donate" button on the homepage, which you can get to by clicking on the word ClusterBusters at the top left of any page.)
    1 point
  45. Hi maskedmarvel, What is exactly your fear ? Do you think it will get gradually worse and you will turn chronic ?
    1 point
  46. 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 an
    1 point
  47. Hi Mashburn and welcome. Sorry that you are suffering PTSD. Well, that is what it sounds like and we get it for obvious reasons. I hope that it becomes much less over time! You have been diagnosed, right? What are you taking for your head? Any O2 for your hits?????? Have you had a MRI with your diagnosis? I always feel that two weeks PF means it is over. I might still get a random hit due to weather, but the cycle has ended. After two weeks with no hits, I will sometimes try a beer - big trigger - and if that goes down with no CH, I call the cycle over. If I feel nervous regard
    1 point
  48. I think the point of the article is in their model anti-inflammatory properties were noted in a non psychoactive component of certain psychedelic drugs. The mechanism for the that property is still being investigated. Personally I suspicion there is an "entourage effect" to all the interventions many find helpful. Somehow the presence of certain substances has an stronger effect than a single substance alone. If you think about it, n=most of the treatments we find helpful are generally found to help reduce inflammation: D3, antihistamines & Steroids come to mind. Whatever triggers th
    1 point
  49. I'm curious how one defines "great success". A years worth of Emgality and D3 program but currently in a difficult cycle. I think about what success means to a cluster head. Personally I define it to be completely headache free. So when I get 18 month remission and then have 3-6 months of hell does that mean the busting\D3\CGRP\whatever bought you the remission or was the remission coincidental with the cycle itself? Sometimes when sucking O2 for the third time a night I wonder if all our solution seeking is just mental masturbation and the cycles will come by whatever path th
    1 point
  50. Well done Double A. Great artwork! An art major working on is Masters at the Tyler School of Art and Architecture, Temple University, listened to my description of a cluster headache beast that chewed through my brain and eye socket, then sculpted the following as one of his art projects. It won an award so I took a photo of it. Take care and keep up the great art work. V/R, Batch .
    1 point
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