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Well got a bit of a shock today . Daughter rang from hospital bed to say,she is moving out of hospital tomorrow and moving in to this new rehab centre that has just opened up . Charity run , it's amazing place like a 4star hotel . Could be there up to 3 months , but she is determined to be out within a month . So just 1 more big step and we get are daughter home .

Suffering from Clusters gives us a first hand understanding of what the term practicing medicine means. Most of us on here have been wrongly diagnosed for years and have been through a hand full of doctors. Best advise I can give is keep pushing on, if your doc does is not willing to work with you find another doc. The fact that you found this site is a huge plus as there are so many great people here that can help you in many ways. As for O2 you can go the way I did and rent an O2 welding tank purchase a regulator from Amazon or Ebay and purchase a mask through Clusterbusters.

.....

Wow, that is one terrifically misinformed PCP - what a nightmare.

23 years later and I am still self diagnosed. These jokers have no way to tell except to listen to the patients words.

I have no funnies for this, but dang, you have to be a very proud Papa!!! Your daughter has the strength of her father. Perfect. All the best to you and her!! She is amazing. I know her youngun is excited too!!!

This was my first conference and first for many things I didn't know of with this beast. I'm glad I didn't explore more of the videos available online before going because I probably wouldn't have held it together as well as I did. I cried most of the drive home and cried a whole hell of a lot more since. Truly life changing and I'm greatful to have had the opportunity to meet the community of people who have saved my life. There is so much to process it hasn't all really set in yet. I've got tools in the box now i never knew of and I know now everything is going to be ok. It was a video of Mr. Wold from 2013 that started my journey to Clusterbusters in 2018 and it just happened to be Mr. Wold who would be the first clusterhead I would look eyes and shake hands with, call it fate, I call it an honor! I love you all!

Hey guys, it’s been a while! I have been headache free for weeks. Some mild dull headaches here and there. I have not had the need for 02 in a long time. My tank sits full and dusty. I am on verapamil daily and shrooms every 2 months. Here’s hoping the fall won’t trigger anything for me. Summers are usually hell on earth for me. I cruised through. I hope you all are well. I haven’t forgotten how much help you have all given me in vulnerable painful times. But I am glad I haven’t had to be on here as frequently. Pain free wishes to all! kat

Flat out amazing! Her smile almost made my eyes sweat!! So happy to see this miracle

For this to be occurring at all - let alone after only 2.5 months (??!!) .........seems a real miracle. What an incredible recovery so far, and what a harbinger of future ability to freely move about - she certainly seems to be determined to make it so, and this event looks like a huge one!!!

It occurs to me, FWIW, that your doctor might have CH confused with the hemicranias (continua, paroxysmal), which have symptoms like CH and, indeed, most of the time do not respond to triptans.

EDIT TO ADD,.....SEE ABOVE, posted at same time....CHfather is, as usual, so far ahead of me i don't even see his dust... ...nice suggestion.....believe only for drug info tho. before the internet i used to ask med school libraries or my docs office for last years copy. over 20 scripts used in my CH career....it helped to know more than what was on the script bottle. now patient insert sheets cover way more than most folks will ever need.... .....believe what i was referring to is this (never seen myself): UpToDate: Industry-leading clinical decision support When you care for patients, the stakes are high and every decision counts. You need the best evidence and clinical guidance at your fingertips to answer even the most complex questions with confidence. ....subscription service for medical professionals.....this physician should have access either personally or through his practice network. website fwiw: Evidence-Based Clinical Decision Support System| UpToDate | Wolters Kluwer

[Edit: I see that jon has just posted this same info about UpToDate .. .. ..] am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide. Physician's Desk Reference (PDF) perhaps? This, as all have said, is one crazy doctor. PDR, as suggested by Jeebs, might have the info that jon' mentioned (and as jon' said, any sane site will list triptans and oxygen). The most commonly used online reference/app by doctors is called UpToDate. Says here (https://nhcps.com/top-12-online-resources-for-medical-professionals/): "UpToDate is considered the go-to source for about 90% of US-based medical centers. A 118-facility study published on PubMed.gov found that most doctors and residents turned to UpToDate before any other resource."

I would be interested to know what this PCP believes is effective for CH????

....are you female...some behind the times pcp's don't think women get CH...they are frightfully and obviously wrong. ...what's your diagnosis? triptans were developed for migraine (but work for CH too)...is this his hang up? ...i am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide. it says the same as the below .orgs and .gov (not the frequently derided .coms)....i could have filled a page easily. EVERY ONE of them states the standard acute care for CH abort is OXYGEN and TRIPTANS (Imitrex)... ....if there is a way to present this info to your pcp...mail or email or mychart or advocate w/o being present to witness the embarrassment (and therefore reluctance to believe) i would try that. if you have an honest relationship where you can sit and talk openly face to face and present references...go for that (i'm suspecting no...but that's an assumption).... ....i saved this comment til last but i was SHOUTING it upon first reading your post..."get thee a new doc"....sheesh, this is a bizarre thing for him to say. preferably a headache specialist (or at least a pcp willing to listen, learn and provide)....and not just any neuro (who frequently know jack spit about CH).... Pharmacotherapy for Cluster Headache - PMC (nih.gov) Cluster Headache Treatment Options | AMF (americanmigrainefoundation.org) Cluster headache - Diagnosis and treatment - Mayo Clinic Management of Cluster Hns use, hieadache (aafp.org) Cluster Headaches: Symptoms, Causes, Treatments (clevelandclinic.org)

......just be careful on the way out!

Hi friends Update as promised. The reloading dose worked. However I pushed it till 14 days instead of 12, then I'm currently maintaining. Pain free for 8 days now so I assume it's gone. Did bloods last week, D3 was at 65. However I aim to bring this figure higher. The O2 technique was working wonders. All in all I'm a happy chappy again thanks to you all and especially batch. Aka @xxx Haven't felt this good since June this year. This regimen is more likely to be a miracle, honestly. pain free wishes and I hope that you all give this a shot. Trust me, it's so worth it. Thanks again and take care. Snowflake

Hi folks I made this contraption to save on O2. It's seems to be working so far perfectly. Easy trigger. Just thought I would throw this out there to help others save when exhaling as we lose alot of o2 during this time. Flow rate I'm using is 8 litres per minute. I used the trigger from a plant sprayer. Works well. Good luck if you are looking to do the same. Use zip ties to get it to hold tightly at the main sections. Snowflake YouCut_20220922_175607174.mp4

PS If this info helps anyone, I just realized a lot. My current cycle followed the EXACT pattern it did in 2020. It started on August 17th and ended September 1st. After reviewing my headache log, I realized this is the EXACT pattern I am in now (attack wise). They stopped on the same day. The only difference is this time I took A LOT of oral sumatriptan and since the 1st of September I have been getting dull, lingering 2/10 headaches, which makes me think the past two week headaches are the result of so much suma. Who knows, but hopefully this info helps... It is crazy how I've had 3 cycles, 2018, 2020, and 2022 and they all happened in the summer and the past 2 started and stopped on the same days (attack wise). Much love to all. PS I will be getting oxygen and Verapamil for next cycle.

jon' has covered the bases very nicely (as always). A doctor who thinks anyone's current cycle is going to be like their last cycle doesn't have much familiarity with CH. (I'd say the same about a doctor that doesn't prescribe oxygen.) You might benefit from getting to a headache center, if there's one near you. You might want to look at this overview, which has a lot of info about a lot of stuff, including ways to possibly stop hits without oxygen, and things you can try for shadows. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Prednisone didn't work, so I've only been using oral sumatriptan (we are going to try Verapamil for next cycle) and some Advil and Tylenol. ...unusual for pred to not at least interrupt cycle while a prevent kicks in. note that verapamil is very dose dependent, and the lower levels have less chance of success. 480 mg/dy in divided doses seems to be the sweet spot...some go much higher. hopefully your doc willing to up the doses, if needed, to find what works for you. many inexperienced with CH are reluctant to use the dosage we need. immediate release (IR) better results than extended (ER). LOTS of water and fiber to keep GI moving along... ....advil and tylenol basically worthless for CH and care must be taken not to use too much. some folks find they help with shadows (naproxen sorta helped me there on occasion) This current cycle has been different. We are now in week 5. The attacks stopuped at the end of week 3 (like past cycles), but now I am hstill getting 1 to 2 dull headaches a day that seem to linger much longer than a true 10/10 hit. I'd imagine these are what many of you refer to as "shadows." They are also like clockwork, 12 hours in between. ....that sounds more like "subtle" hits than shadows...which most find less predictable than the dang predictable timing hits My doctors insist the cycle is ramping down, but it just seems to be morphing and not ending. Again the pain is 2/10 vs a 10/10 for proper attack, but it's still happening. If I take half of a sumatriptan (50mg) it knocks it out, but I am so over taking meds. Has anyone experienced a pattern like this and if so do you think it's better to just take the pain or is it better to knock them out with the .5 sumatriptan? Could the suma be prolonging this cycle? ...YUP.... it can cause rebounds and extend cycles....your gut feel on meds is correct. OXYGEN has none of these negatives ...fast, easy, and relatively cheaper compared to sumatriptan ...combining (or even alone) an energy drink (minimum 100 mg caffeine/1000 mg taurine) or other high caffeine drink AT FIRST SIGN OF A HIT with the oxygen was my go to....sometimes all by itself was sufficient. ....have you considered or tried the D3 regimen and or busting.... Thank you in advance for your insight and much love to all of you enduring these horrid headaches.

OXYGEN!!!??

Pictures don't convey the experience adequately. I'm sure there are more photos on Facebook. I encourage everyone to make the trip next year.....Orlando, FL I believe is the location.

Hey Mariana, It's my pleasure. With regards to the "phantom pain" I also get those. It lingers the entire day at a mild level. Causing stress and anxiety like it gonna start an attack. All the pain meds or antiinflammatory meds will not get rid of it. However, what I found is that when I took O2 for a short while that pain disappears. Feels like the clutches have released from the side of your head. Give that a try. If you search on my alias here you will find all my posts and like you, I started of not knowing much about treatment and this site has taught me patience and how to cope. You will also read that I was very hasty in trying to get relief as quick as I could. Oh and that I tried alot of stuff along the way out of desperation including dangerous procedures and the use of pharmaceutical drugs that left me with 2 hip replacements. I experimented alot and some times I ended up worse to begin with. Let's start with O2. My very first experience I thought it would work the moment I put the mask on. Then gave up on it. However after alot of encouragement and advise from this group I started on it again and it worked. Then I played around with the flow rate and adjusted my breathing techniques to now where I finally found a way to abort day time attacks in a matter of 4 to 5 mins or less using a low flow rate of as little as 8 litres per minute. As mentioned on previous posts, when you find that an attack is starting, you have to let it start at least 2 to 3 mins. Then head in for O2. Using the non-rebreather mask, I set the regulator to 8lpm. Let the bag fill up. Pull the O2 through your mouth with your tongue touching your upper palette. Hold the O2 in you lung till the bag fills up. You will still feel like the attack is going to get worse but it won't. For comfort during this time, cup the affected side of your head with you hand whilst doing this and slowly apply pressure and massage that area in circular motions. Exhale one the bag fills up and repeat. You will find that you will stop the attack much faster and also save on O2. Leaving the tank at 8ltpm, is kind of like a timer of how long you should hold the oxygen in your lung before exhaling. Of course this won't be the case for nocturnal attacks since they are difficult to catch. So for those, do the norm of 15 to 20lpm and remember as difficult and as painful as the attack is at that moment, you have to try to focus on trying to hold as much O2 in your lung as possible for as long as possible and keep telling yourself that it's going to release just now. Try to focus on a happy place. I know it's really hard to at that moment but I found that if I force myself to try to be calmer, the quicker I get relief. I picture being in a boat in the middle of the ocean with dolphins swimming past. Lol. I always have that image and it does help me during O2 treatment. I think we all can agree that as a rule of thumb: Always have O2 wherever you are during cycle. Regarding the D3 I think I'm like a 3rd year student of Mr @xxx. The reason I say this is cos I didn't do it right the 1st time. But after having grusome attacks every 2 hours for the whole of 2019, I had no other choice since non of the other remedies on here helped me. The first thing I think you should do is bloods. Check where your D3 is sitting at. The first time I checked mine, it was at a shocking 18. Explained why my attacks were so frequent and so so painful that I almost peeled the skin of my forehead on the affected side. After loading as per the schedule, it climbed to 40 after 3 weeks. Then 80 in another 3 weeks. Sure I was still getting attacks but it was too few to mention during the loading. There were a few days where I did have what you may call "slapback" attacks which were painful but always keep your eye on the ball so to speak. So once you get your d3 levels tested, check what it is at. My guess is that it is very low. Then work on trying to bring it up and never forget to take the regimen every day. Including the cofactors as they also play a very important role including proper absorption of the D3. I strongly recommend that you get in touch with @xxx, as he will guide you on specifics and dosages etc also as mentioned previously, its on the files section. Print it like I did. Highlight as you read through and trust me, you won't go wrong. So I don't thing that the D3 brought on that attack. I think you should persevere and make sure you do your bloods. Get your number and take it from there. Cos it is the starting point. unfortunately, we have to be patient and let the regimen start to work. There is no quick fix as much as we wish there was. But like I said, keep your eye on the ball. Once you know where you want to be, you will know when you want to start. I strongly believe that you can do this!! Take care and best wishes Snowflake

Hi there Mariana, Welcome and nice to meet you. Regarding the D3 regimen, I have also had the same experience initially. However last season and this season I decided to give it a chance and for me it really made such a huge difference in the frequency and intensity of the attacks. From someone that had been getting hits every 2 hours day and night to 2 mild attacks a night only which I aborted with oxygen, it's given me my life back. With the proper dosages and cofactors it really does wonders. Our humble friend @xxx aka batch has developed this regimen and he can guide you further. Also have a look at the files section, there's tons of information on it and it will also guide you as you go along. Wishing you well and I have alot of faith in this regimen. Once it starts working, you will be amazed at the results. Also make sure you have O2 on standby and work on your breathing techniques and you will be just fine. Pain free wishes always Snowflake

Hey ya'll!! Been a minute since I've posted!! It's been a hectic few months since my Dad's passing but things are finally starting to slow down so hope to have a little more time for the forum!! Had hoped to be in Chi Town today, (hung over from last nites presidents reception and shenanigans that inevitably follow), but couldn't get the stars to align so just want to wish everyone safe travels and a great conference experience!! DO NOT, I repeat, DO NOT participate in the chip challenge if invited!! Lmao!! DD

VID-20220916-WA0000.mp4 Didn't think I would see this day again !!!!! 2nd July my world stopped ,but I can really say the light at the end of the tunnel is getting brighter and brighter , she's amazing

@CHfather, thanks for the link and reference to what Batch has written about mast cells. I am just "wowed" by the amount of great information and help available with this group. I appreciate the time and effort you all put into sharing your knowledge and experiences. It makes this condition much less lonely and isolating. What a fantastic group of people!

Jeri, Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167). I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do. Maybe there's something here that meshes with what you have found. I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH). Unstable joints, bruising easily, some joint hypermobility and clicking.

.....nope...separate by 4-8 hrs. ask your pharmacist...they really know this stuff....

Thanks for this update, charles'. So glad that combo is working for you! Do you also have oxygen? Have you considered the D3 regimen? It would take a very long time to answer this question about those three meds individually, let alone in combination (I don't recall anyone who has taken that specific combo and only those three, but it could have happened, I suppose). Leaving side effects aside for the sake of discussion (but they can be significant), each of them has had successes and disappointments for people reporting here. If you want to see more, you could use the search bar at the top right of each page. There are not a whole lot of entries about cyproheptadine (Periactin) and not a huge number about amitriptyline (Elavil), but Verapamil is a whole other topic. Lots of people have tried it, some with very good results (often at doses that are considerably higher than what is typically prescribed). The Periactin is an antihistamine, and in the last few years, thanks mostly to Batch, it has been recognized that allergic reactions (even without symptoms) can fire up CH. Like I say, really too complex to try to discuss all this here. Have you talked to your doctor about this stop/start approach to taking the meds? I feel pretty confident that that is not really a good idea, at least with the Verapamil and probably also with the Elavil.

Greetings Family, Update as promised. So I followed the" Reloading dose, however I was hit with "slapbacks" (Nothing that O2 couldn't handle.) They were manageable and aborted at an average of 10 to 15 mins. I also, instead of going 12 days with the reload, I did it for 14 days along with the co-factors and some help of prednisone at low doses. At day 7, I was hit every 2 hours, throughout the day. and about 2 attacks per night. After that it began slowing down and well, I know we all hate to count our chickens before they hatch, I'm pain free for 2 days and night so far. Still staying away from triggers to be safe also. I find also that if i'm busy, I don't get the attacks. the moment I put my feet up to rest, it was getting me. Weird. So for me, the D3 Reload hopefully shoved him back into his cage. I'm maintaining the regimen now and will continue to do so. The only thing waking me up at night is nasty leg cramps. Usually at the front arch of the ankle. Awkward place and i Just put some salt under my tongue, and it goes away after about 7 minutes. Not sure if the magnesium is causing that but I am on the Magnesium Gycinate so trying to adjust the dose on that one to see how to stop the cramps. Aside from that, I feel great once again thanks to Batch aka @xxx, @BoscoPiko, @spiny Regarding the intake of O2. I don't know if this is placebo effect or if it is really aborting faster than usual when I changed the technique. I only open the regulator to 8 liters per minute. Let the bag fill. Lift my tongue to touch my pallet and then breath in through my mouth. Maybe it enters quicker like sublingual medication? Not sure. I then hold the O2 for a few seconds until the bag fills again (since its on 8 liters per minute it give me time to hold the oxygen in my lung. I exhale and repeat. I found that by doing it this way, the attack stops faster and you also save on the tank itself. I also cup the side of my head with my hand and massage it whilst doing this. The catch here is that when you know he is around even before the pain hits, you got to let the pain start for about 3 to 4 minutes for this to be effective. As i found that if you take O2 too early, it take a little longer to abort and you in store for another attach in about 2 hours time. This is of course for day time attacks as it is difficult to catch nocturnal attacks the same way. This method is the most effective for me, so i thought I would share it and hope that it works for you guys. Regarding migraines My brother suffers bad with them so i also put him on this loading schedule. I am pleased to say that it has almost stopped them from coming as he is still towards the end of the loading dose. In fact i mentioned it to 2 people who got the same relief. Just got to be patient and disciplined regarding the regimen I guess. I am so grateful for all the help and guidance I get from Batch and everyone in this group. The research you all have put in on the files section is really so interesting. I used to want help instantly like most of us here and out of haste do stupid things. But after a lot of reading on here I got all my answers. Its kinda like much needed ammunition. So this is my update so far. Thanks to everyone that supported me and steered me in the right direction. Wish I could meet you all. You guys ROCK!!! Kind Regards and pain free wishes always Snowflake

I do have to say though... When I think of the "Cluster Bunny" it looks a bit more like this....

...same feelings here as Jeebs....worth a try. have always wondered about our "active" vocalizations that seem above and beyond those experiencing extreme pain. thinking back patients here for one, as i am one. totally theorizing that it is an attempt to influence "some" bodily function that will relieve our pain. sometimes it's voluntary, and sometimes just feels necessary. could it be the vagus we are hunting? dunno ...never seemed to work for me tho studies have shown that vulgarities/profanities shouted in the midst of anxiety do have, if nothing else, at least psychological benefits. since it was mostly wasted energy/made things worse in my experience, i trained myself to remain calm and non vocal while hitting the O2 and concentrating on "breathe" only. before that carried a (soon soggy) pillow to scream into in deference to the neighbors... ...i do think it behooves anyone wishing to explore vagus nerve stimulation to try out the VNS device. 'tis specifically designed to do such. i occasionally see a positive report for CH patients....but it has not caught on so apparently only works for some (who wouldn't want to be one. only one way to find out)...tho i bet $$$ w/o insurance approval.

No but I sure have done a bunch of cursing along with some unspecified sounds

what the hell....that's the first time i hear such nonsense. either you take it upon you to educate him, jon019 provided links, or you get yourself a more knowledgeable and up to speed doc. take care!

have you given batch's vitamin d3 + cofactors a shot (no pun intended)? seems to be helping with migraines, too.

Hey Sparklegirl, I remember getting hit 8 times/day. It was bad. See your PCP for assays of your serum 25(OH)D3, calcium and PTH (Parathyroid Hormone). It's a safe bet your serum 25(OH)D3 concentration is low < 30 ng/mL (75 nmol/L). If I'm correct, starting the anti-inflammatory regimen CH and MH preventative treatment protocol is prudent and the best way to get your CH under control. The following photo illustrates the supplements by brand and doses I take and suggest to other CHers. It helps to start this protocol by loading vitamin D3 to elevate serum 25(OH)D3 more rapidly. The loading dose I've used is two of the 50,000 IU Bio-Tech D3-50 capsules/day plus 0.5 mL/day of the Nutrasal Micro D3 nano emulsion taken sublingual (under the tongue for two minutes without swallowing). This brings the loading dose to 140,000 IU/day and It's taken for five (5) days for a total of 700,000 IU of vitamin 'D3 then drop back to an initial maintenance dose of 100,000 IU/week of the Bio-Tech D3-50. It's also helpful to double the magnesium dose by taking 400 mg with breakfast and 400 mg with the evening meal. This provides 12 hours and 12 feet GI tract separation between doses and that helps avoid osmotic diarrhea. See your PCP in 30 days for another round of assays for serum 25(OH)D3, calcium and PTH. Your 25(OH)D3 serum concentration should be up around 80 to 100 ng/mL (200 to 250 nmol/L). If the CH beast is still jumping ugly after completing the above loading schedule, I would start the antihistamine Full Monty. This is a clutch of supplements with antihistamine properties that includes 2 to 3 grams/day Turmeric (Curcumin), Quercetin, Resveratrol, Omega-3 (EPA and DHA) fish oil. It also includes 8 grams/day viramin C, 5 mg/day Melatonin (taken at bedtime), 250 mcg Selenium and 1000 mg/day NAC (N-Acetyl Cysteine). Stay at this dose for 5 days then drop the dose of the first four supplements to one gram/day. Take care and please keep us posted. V/R, Batch

.....ah yes, mamma don't allow no smart ass cluster bunny here....

....and not taken as such...i was riffing on your comments that are near universally true in clusterville. What Jon said - especially since @BoscoPiko could easily be deemed LLTELASN (least likely to ever leave a snide comment).

The VNS device is gammaCore. https://www.gammacore.com/ By itself in typical circumstances, it doesn't work as well as an optimized O2 system. It supposedly has some effect when used as a preventive. I think you have to have a prescription to get it. Previously, and maybe still today, the first month was free but then $598/month after that, in the US. A 2021 evaluation within the UK National Health Service (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8611122/#:~:text=gammaCore reduces the frequency and,in the first 3 months.) "recommends routine adoption of gammaCore into the UK national health service," but presents these "key points for decision makers": gammaCore reduces the frequency and severity of cluster headaches but does not work for everyone. There is currently no evidence of a sustained long-term benefit. Treatment with gammaCore should therefore be stopped if patients do not experience any reduction in symptoms in the first 3 months. gammaCore was used alongside standard treatment, so decision makers should be aware that the possible benefits achieved with gammaCore are as a result of the addition of gammaCore to current standard treatment.

I wouldn't discount techniques for stimulating the vagus nerve as worthy experiments. I know Wim Hof claims that submersion (or showering) in cold water has a big vagus effect. I can't claim to know whether that is a legit scientific fact though. Then there's one gal on Tik Tok (which granted could really impact credibility!) who suggests placing an ice pack right on the middle of your chest as the instant/convenient/super direct way to get the same kind of vagus thing going on (in that case it was was presented in the context of relieving anxiety and insomnia).

I had COVID at the end of May, and about 1-2 weeks after shaking it, my current cluster cycle started. And I'm still trying to break out of this cycle. They normally only last about a month with me. Over 2.5 months now, and still going strong. No issues after any of my three vaccines.

THIS!.......please.......

That would at least make some sense! Good observation @CHfather

Ah ha! This sounds to me like one highly plausible theory from our light years ahead CHfather. Like your doc could have gotten his CH and his HC transposed.