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Showing content with the highest reputation since 06/24/2021 in Posts

  1. Hehehe.....I've been meaning to respond, but....you know.....ADHD Ok, SOOOOOOOO I'm feeling great! Since the last post, I had nightly nasty kip 6 to 8 attacks, even up until independence day. Then from Monday till today, I only had a kip 1, which I suspect was my fault because I ran a test and had a hot dog for dinner last night, and was later greeted by the mini-malice. But, also took a risk by only taking 400mg B1 that day(Im back to 500mg now). However, I slammed a redbull, melatonin, and some ginger capsules and went to sleep. Now, I really feel the B1, and mm busting (4 times
    4 points
  2. ...hi TH...welcome aboard... ....couldn't answer how "common" it is... but definitely a known that some folks have permanent/semi-permanent after effects....including droops, sags, redness, puffiness...and/or, as in my case, miosis of hit side eye. no discernible vision issues for me, and several eye docs have noted it and shrugged... ....i would be concerned enough about this showing up so far after a cycle that i would consult a doc. there are other conditions that could cause this and it bears getting out in front of... best, jonathan
    3 points
  3. @Bushcraft39 welcome to the forum. I would start the D3 regimen immediately. If you search D3 in the search bar you will find all the info you need. This will most likely help lessen the frequency and intensity of the attacks once the vitamins finally kick in. Have you been to a neurologist? Are you able to get oxygen? It’s a life savor. I bust with MM myself and find it to be incredibly helpful. Keep us posted. kat
    3 points
  4. Thank you for your help earlier. I followed your lead with the slight lift to exhale. That was my first time using oxygen. Not perfectly done I’m sure, but it worked for me.
    3 points
  5. Although not directly answering the original question, I thought it would be of use to people that I can confirm I was able to obtain RC Seeds in the UK by ordering from a US based source. I ordered on 2nd July and have just received the delivery today. I do have some concerns with regards to whether the changing conditions that they would have been subjected to during international transit may have affected their potency, but it's still encouraging that I was able to get them. I guess time will tell with regards to their potency. Not sure I should mention the name of the purchase sou
    3 points
  6. .....mit...i've always used the 5 mg zomig ns, but there is a 2.5 mg version......at least as seen online. never used more than one per hit/dy, but they worked nearly every time, and better all ways around than suma. also used very judiciously as i was petrified of rebounds, and the thought of my "last resort abort" causing MORE hits was too much to contemplate... ....interesting your methodology.....i found that a certain tilt back of the head, plug opposite nostril and with just the right amount of inhale (less than a snort) was ideal. not enough and it dripped out, too much and the awf
    3 points
  7. This was me 10 years ago. At my chronic phase I was on 720-1100mg verapamil daily. To me the "dependency" was also keeping CH non-stop; keeping me chronic. I never got relief from Batch regimen (Vitamin D protocol) as long as I was on verapamil. Looking back now, for me use of steroids and triptans also made it impossible to create a PF break with vitamins. At the very end of my rope I was forced to do the detox from prescription meds to be able to start busting. It's a road I probably could not walk twice in one lifetime. But now that I'm free from Rx, D3 protocol is only thing I need to keep
    3 points
  8. Attached here. NYT - CH 7-22-21.pdf
    2 points
  9. Hi @Bushcraft39, Your introduction to CH was the same as mine, Id get these intense headaches, regular as clockwork, 3 times a day. I thought it was my back problem (lower back injury) that had spread up and trapped a nerve or something. Dr's were no help (at the time) so I'd go and see an osteopath 3 times a week, (at a cost of £105 a week!) and it would eventually stop. Sadly it would come back many months later and I'd repeat my trips to the osteopath. then after a few years of this cycle they didnt stop. I like many others decided there was only one option. I decided to leave this life. I
    2 points
  10. I too would say show it to your doctor. I think solely as cluster related it's rare to happen to a degree it's affecting your vision, but it does happen. I would estimate seeing that around 1 in 500 clusterheads (but don't know if there are other things causing it) ...
    2 points
  11. ....careful with the OTC...will tear up your stomach w/o touching the CH (well, maybe helpful for shadows) ....a journal is a most excellent tool for determining triggers, and most helpful for a headaches specialist in confirming diagnosis. know of one who considers journalling itself as an indicator of CH. note that many neuros are as clueless re CH as most PCP...ya need a specialist. at the bare minimum ask the neuros office if the doc is familiar with treatment of CH... ...an energy drink with at least 120 mg caffeine and 1000 mg taurine is especially helpful for many clusterheads
    2 points
  12. ....ooops....sorry. Benadryl just a brand name...is totally different compound outside US/Can.... .....what i refer to is diphenhydramine.....which in Britain (EU?)is available OTC (i think)as a "sleeping aid".....perhaps Nytol or Unisom...or something called Dimedrol (help! UK folks). Old time med that i have found personal success with..... and many others report same. batch describes partly as a blood brain barrier transit issue. could always deal with the drowsiness for the definitively beneficial effect.... ....away from home PF surely indicative....but involves too much to be s
    2 points
  13. Medicare actually reversed this ruling in just the past couple of weeks and will be covering O2 for clusters now! Remains to be seen as to when the change will actually go into effect.....since I've already paid for my tank and refills are so cheap I'll probably continue to huff my weld ox but this is huge for the clusterhead community! DD
    2 points
  14. ....wow....that's a tough one. Any thoughts or consideration to allergy mediated (molds,chemical) in his home environment? Has Benadryl or similar been tried? A food log with selective deletions in diet?
    2 points
  15. ....i can still get teary recalling the first time (1985) OXYGEN caused the pain to drain.like.water.... and i just KNEW i had my life back. may you continue to say "it worked"....
    2 points
  16. ...the "war on drugs" has made for some very odd laws...have seen countless times the illegality of certain items in certain countries...like frigging flower seeds. makes me ponder what the conversation is like in a horticultural club of a Thursday evening in York? are plum trees allowed...you know them pits got cyanide in 'em.... ...Drewbie...check and double check that those seeds have not been "treated"... to make 'em "safe", of course...
    2 points
  17. At this point, I couldn't agree more
    2 points
  18. .....a full but DUSTY O2 tank being among the most beautiful sights ever.. I liked to keep one around.....ya never know...
    2 points
  19. Hello Everyone, I'm sorry it took so long to post an update, I wanted to be completely sure before posting anything. I took Batch's advice and implemented the changes mentioned above. Within 3 weeks I was 100% pain free. No more headaches or shadows, no watering of the right eye. I was dreading what would happen if the D3 Regimen stopped working for me, but thanks to the wonderful people on this forum I don't have to worry about that any more. On a side note, I noticed that reducing inflammation really helped me out with my workouts. I had injured my forearm three different times try
    2 points
  20. @trjonas I'm glad you were able to get some releif at last for part of your symptoms. Can I ask how you were able to tell what components of your headaches/symptoms were from the compressed nerves vs CH? I ask because I have clear cluster symptoms and a diagnosis, but also seem to have strong triggers from neck posture/position and neck motion and I have wondered about nerve compression and/or cervical component. Was there any testing or imaging that was able to confirm the diagnosis of compression of the nerves? I have had many nerve blocks over the years with some partial response but
    2 points
  21. Nasal imitrex is buffered differently than sq injection. I don't think its a good idea because it might cuse cell damage locally or not be absorbed. This is a theoretical answer but dividing cartridge doses into 2 mg aliquots is a good alternative if vials not available. It odd that vials arent available because Canadian pharmacies sell them to the US. Imitrex overuse can cause chest tightness or stomach pain because of vasoconstriction. Generally speaking younger folks (sub 55 or so) can tolerate more doses. Using oral version isn't much help for acute pain of a cluster. Reb
    2 points
  22. typo....meant NON-rebreather mask.....the optimask at clusterheadaches.com is a cadillac version....
    2 points
  23. @Tony Only Wow! Thank you for this. It's *very* encouraging. That makes me want to come off the indo all the way. I'm down to 50 mg daily from 225 mg, but I think I can go all the way. I too am doing the Vitamin D protocol (very high dose in my case, as I seem to have multiple conditions and they all seem refractory, e.g. 100,000 IU daily, with a whole bunch of cofactors, under @xxx / Batch's watchful care), and busting, with help and guidance from the generous @Jteira. Here's to complete healing!
    2 points
  24. Tony, congratulations on your new family member!! I pray that all ended well in that department!! I am delighted that you killed that cycle too! It is criminal, in my book, to penalize you for 'doing what had to be done'. Big hugs my friend!!!
    2 points
  25. Thank you @trjonas that is so sweet of you Here's an update: After writing these posts I quit taking the Batch regimen (anti-inflammatory regimen) because was forced to do so in public healthcare. I had been leaving "god please help me" messages to the neurology department in my town. In november we had a baby, our baby was in intensive care and as parents we were staying in hospital 24/7 me starting to get CH attacks again. It was difficult even to get O2 treatment in hospital which kind of gave me perspective and real life experience how far behind we still are here in CH treatment. But
    2 points
  26. NOPE! .... i was 26 when it started for me (most start around that age)....retired senior now.....life, job, career. it was OXYGEN (mostly), energy drinks, D3, verapamil for a while, zomig nasal spray as abort of last resort....maybe even age and chemo got me through. Busting remains in the tool belt if need be... ...find the right tools (we'll help) and note that they may change, make a plan (scripts, meds, providers), and keep a good attitude (i always thought, screw it, aint gonna kill me, aint gonna quit).............. best jonsthan
    2 points
  27. Ok, sorry for the time gap, but as we all know, that when we have any PF time we take advantage of it. Yes I am a hot mess atm, but that's the life of a cluster head. lol So, before I get to what I've been up to, I will start by saying again, THANK YOU!.. Most of the time, it feels like no one can hear me (us) without misguided judgment. We are all fam here, even if we disappear for a spell or two. And CHFather, you are a guiding light of hope for so many here, I cant even imagine the amount of desperate souls you have given hope to. Kudos, my man. Ok, let's get down to brass tacks. Xb
    2 points
  28. .....you could breathe straight from the tube. i find a little awkward but many folks prefer...make sure you are not also inhaling thru nose at same time... ....tape over any and all vent holes...you GOTTA have pure oxygen.... ....stick the mask in a bag big enough to hold it and allow some "fillage"....squeeze closed with just a corner open to mash yur face into...breathe then exhale outside the bag... ...experiment with various breathing techniques...many find hyperventilation with intense inhale and crunch (sit up like) exhale to be most effective (start even before the O2) .
    1 point
  29. Schmerbals herbals or tranceplants.com
    1 point
  30. This announcement is largely through the efforts of Bob W and his organization. Long overdue strikeouts appeared after posting not sure why Admins feel free to adjust. Our community has been advocating hard since 2011 to reverse a CMS (Ce
    1 point
  31. The title, "Educating Health Care Professionals" is not possible done as single patients, spouses, family members. Join the nearest local headache organization, create a CH sub-group if needed and working as a network you can and will start making a change. When we are giving feedback or demanding a change after an ER or doctor's visit backed up by our local and possible mother organizations patient after patient that will be noticed. We seem to be very fragmented, isolated and alone in many countries. And at the same time each of us are dynamos. Pf wishes to your family
    1 point
  32. Brad, very glad to read this! I'd like to consider adding B1 to our list of possibly-beneficial treatments, but I have a question. You first reported using the B1 on June 22, and it seems you started the B1 on 6/21. In your most recent post, you say that you had bad attacks up to July 4 (~13 days). In the case study you referred to, the patient had "decreasing frequency of attacks until they disappeared completely within 10 days." Was your experience like this, with steadily decreasing something (frequency or severity)? Sounds more like in your case it was more like same same s
    1 point
  33. @trjonas Thank you for your response. I'm glad you had a pathway that had clearer indications and a positive result. For me, MRI's and other scans have all been clear or "clear enough" might be more accurate because I do have various findings on my neck such as foraminal narrowing and some bulging. That said, I've always wondered about compression, and given what you passed along from your doc about no imaging being able to show the damage, I still wonder about it. I have also read studies that seemed relevant, as does your case. I've mentioned compression to many docs over the years but
    1 point
  34. @trjonas Just curious -- Are you taking Neurontin (gabapentin) or a similar medication as part of your post-operative therapy? I ask because Neurontin is often prescribed in nerve-regeneration situations (and it's also sometimes prescribed for CH).
    1 point
  35. I know that you can take 15mg of zomig nasal spray and still live. I had a killer hit one time and took the 3rd dose within 1 hour after the first one. It did abort the hit but I had rebound headaches that went on for well over a week. Looking back on it I don’t know if it was worth it. Desperate times can make you do desperate things. Kind of a weird thing, I found that if I snorted the spray rather than spraying it in like the direction said It was more effective.
    1 point
  36. Spinal headaches rival cluster attacks. They should be treated with a blood patch which works immediately. Conservative management includes lots of salt and caffeine. Blood patch is the way to go.
    1 point
  37. @eileenbunny How about posting this on your Facebook page ? Then we can share it on different FB groups. There are tons of people there.
    1 point
  38. I hope this is still firm! Just bought non refundable tickets! @trjonas
    1 point
  39. Brad....not sure your experience with OXYGEN...changed my life...do your best to get and use appropriately: min 15-25 lpm, non- rebreather mask/direct/demand valve, proper technique (hyperventilation most popular, also breath and hold, slow breath, combo)...
    1 point
  40. Brad, hoping that the B1 is going to continue giving you relief! I looked up that case report that you mentioned and it is encouraging (https://www.hindawi.com/journals/crinm/2018/3901619/). Of course, you know that you could set up a welding O2 system in a couple of days. Maybe your current relief will be long-lasting (or permanent), so you can wait to see what your neuro says after you make up with her next week.
    1 point
  41. @Cast Iron, you could read this book about the Coimbra protocol to get an idea of side effects of really high-dose Vitamin D. I'm finding it helpful and informative: https://smile.amazon.com/gp/product/1983353248
    1 point
  42. @Bejeeber Admittedly, there have been very few clusterheads that have tried nitrous as an abortive so as far as working for other people we really don't know yet. But it works damn well for me
    1 point
  43. @Tony Only Is https://www.lifeextension.com/lab-testing/itemlc081950/vitamin-d-25-hydroxy-blood-test (though that's only Vit D) an option for your country? If not, I can help you pay for a test in Finland if you need it. I'm not wealthy but I want to help!
    1 point
  44. Here are the results from the online survey I urge CHers to take 30 days after starting the anti-inflammatory regimen, with results of their 25(OH)D3 labs in hand. The following chart illustrates days to a favorable response from start of regimen. As you can see, this can happen rapidly. For the purpose of this study, I set the Favorable Response = at least a 70% reduction in CH frequency by at least 70% of the CHers starting it. I just checked the latest survey download from two days ago. After 9 years running, survey data from 340 CHers indicate 82% of CHers starting this regim
    1 point
  45. It's a bit of a twisted logic - Vitamin D is added to our food in Finland since we are Vitamin D deficient as a nation (no sun during winters) but then again if you supplement it's dangerous and we are already getting "too much" from food that has added Vitamin D. This heated discussion has lasted for decades. Few key doctors who dare to disagree are out of doctor's union. Research will change the world.
    1 point
  46. Update on B1, still taking 300mg am and 200 pm and D3 20k daily. I had a bad ch day last weekend, stress related, to much going on with work and life. The recovery time was less than in the past. Batch had a post about coq10, curamin, vitamin c for more immune boosting. So, I added this to mix, seems to help increase my energy level in the evening. Amazingly, I’m still mostly pf, heat and humidity would have trigger before B1 and increased dose of D3. Hope your days are pain free, peace
    1 point
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