mhowcroft Posted October 28, 2021 Share Posted October 28, 2021 Hi! I'm sure my story is a familiar one around here. CH started around puberty. Quick onset, excruciating pain behind and around my left eye, usually lasts 15min - 1 hr. watery eye and nasal drainage - I bet you guys know what this looks like. Cycles usually last 4-6 weeks and they used to be every other year or so. I've seen drs. and neurologists, neurosurgeons, had MRIs, angiogram, had drs. tell me that I'm lucky that I don't have a legitimate health problem (eye twitch) and my neurologist told me that I don't have CH because I'm a woman (eye twitch) she thought I must just be a high risk for an aneurysm. Life was depressing for the 5 min. it took me to write that off as BS. I have not been on any medication that worked other than a steroid and personally chosen not to try oxygen because I'm stingy and my insurance won't cover it considering that no dr. has taken me seriously in the 16 years that I've been seeking relief. its been almost 4 years since my last cycle and I was newly pregnant. I asked my OB if I could have a steroid because I had previously had an ER dr. prescribe one and it ended the cycle but they said no. Now I am 36 weeks pregnant with baby number 2 and the headaches came back 6 days ago. In 2 weeks I'm scheduled for a caesarean and my husband and I are both scared - there is likely to be a few weeks of CH, a newborn and a 3 year old. My question, does anyone have any none drug related suggestions to shortened the cycle? Has anyone given birth during a cycle? I'm unrealistically hopeful the the hormonal change from giving birth will push my body out of the cycle. I planned to nurse which further extends my ineligibility for medication / steroids, has anyone been through that and offer any advice or suggestions? I don't want to give up nursing or the care of my children while I'm on maternity leave because of these freaking headaches.. ** I have read and understand the idea behind Busting, personally I'm pro psychedelic mushroom but I was always afraid to mix it into a CH cycle, its great to find this group of people who were braver than I. I also haven't revisited this as an option because I'm often at work during CH and cannot use any even moderately debilitating relief options. Just looking some someone who may have got through what I'm walking into to offer some advice. Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 28, 2021 Share Posted October 28, 2021 Haven't been through it. I don't think the D3 regimen is likely to have any super-quick effect, but it might shorten your cycle. I don't know about that regimen and pregnancy, but I'll bet someone might. Oxygen seems to me to be by far your best bet if hormonal shifts don't do the job for you. Without a prescription, you can set up a welding O2 system, as a good percentage of people with CH do. That can be done in a couple of days, for maybe $200-$250. 3 Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 28, 2021 Share Posted October 28, 2021 (edited) OXYGEN!!!...your best bet non-medication (traditional or alternative) hit killer. no side effects, no baby harm or medication pass thru, quick, easy, relatively cheap in my experience...tho i would have freely gone into debt for the sanity, perhaps life, saving benefit. when insurance didn't pay for me i made a self pay deal with the O2 shop. welding O2 will bypass all the hassle.... except for the logistics. is too bad, but it won't change cycle length. proper flow, mask, and technique all critical. Edited October 28, 2021 by jon019 4 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 28, 2021 Share Posted October 28, 2021 Sorry to say but your gonna have to forget about the cost and get OXYGEN!!!!!! 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 29, 2021 Share Posted October 29, 2021 Hi mhowcroft! So happy that you found us. I must agree with the 'You need O2' statements above. I know that requiring O2 treatment for CH has been added to Medicare, so there may be hope in that area. Can you have your OB prescribe it and submit the request? Perhaps your insurance co. has also had to change their requirements for O2 needs. I do strongly suggest that you speak to the anesthesiologist regarding delivery! Epinephrine is well known for kicking off our heads and is usually in anesthesia. They need to know what this will do to you and formulate your meds accordingly. I have suffered my very worst CH post surgery and learned the hard way to tell them, not ask, tell! They should be able to accommodate your needs there. I sometimes wonder if the cycle set off post delivery is caused by the anesthesia as much as hormones? I had severe poison oak with my last one and was denied steroids too. Even though the mess was in my eye!!! It can be and is heartbreaking when they say 'NO!' Get your O2 set up now, either way that you have to do it. You will be grateful for the relief. Then utilize the 'non-busting' methods of treating your hits. Energy drinks, V8 Energy, or coffee. I highly doubt that it will keep you up. Feet in screaming hot water. Ginger tea or candy for 'shadows' - that lingering headache that drives us nuts on occasion. It can be a huge help. Read up, but I don't think it is contraindicated. And they abandoned the whole 'coffee during pregnancy is bad' a long time ago due to lack of fact. Besides, soon you won't be pregnant. I know that you will want to keep these internal additives to a minimum till you see how/if they affect your newborn. If you are getting nocturnal hits, then rest/sleep in a recliner with your heart above your head. You will wake sooner and be able to take action quickly if needed. Personally, I would investigate and not rely just on the dr. input. They can have limited knowledge in a lot of areas and just repeat a mantra to you that is not valid. All the best for you and your little one!!! 4 Quote Link to comment Share on other sites More sharing options...
Freud Posted October 29, 2021 Share Posted October 29, 2021 Aside from the Vitamin D protocol which has a similar success rate to busting, oxygen will be your best friend. It’s worth the money! Are you sure insurance won’t cover it? CMS approved it and insurance cos usually follow suit. Unless you’ve tried to get it in the last 6 months I’d try again. There is a trusted Dr list in the general board. May be one is close to you and you will get real help. Where are you located? My heart goes out to you. I couldn’t imagine how hard this is on you. 4 Quote Link to comment Share on other sites More sharing options...
Freud Posted October 30, 2021 Share Posted October 30, 2021 On 10/28/2021 at 1:18 PM, mhowcroft said: I also haven't revisited this as an option because I'm often at work during CH and cannot use any even moderately debilitating relief options. Just looking some someone who may have got through what I'm walking into to offer some advice. Busting isn’t part of most peoples abortive agent. There are some that try the SPUT (Small piece under tongue) and have reportedly gotten relief, but that’s not been true for most that have tried it. When we say busting aborts CH we mean aborts the cycle or gives you CH free time for chronic CH sufferers. I highly recommend connecting w @xxxand try the D protocol. 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted October 30, 2021 Share Posted October 30, 2021 (edited) PS, please look into Oxygen. I put it off for the first year I had CH and even though I have some stubborn CHs that it doesn’t always work for it’s truly a godsend. If you want to see if it works for you go to the ER during a hit aka attack and see if it helps. It has to be high flow, at least 15liters per min. Preferably 25LPM, but most ERs don’t have a regulator that goes that high. With a nonrebreather mask. sorry if I sound like a broken record... Edited October 30, 2021 by Freud 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 30, 2021 Share Posted October 30, 2021 10 minutes ago, Freud said: sorry if I sound like a broken record... ....nope...impossible to say enough.....OXYGEN should be highlighted in every CH forum. may not work for all, but is among the rarest of the effectives: works bestest for the mostest! i am sad when a fellow clusterhead has exhausted, w/o success, all the critical variations of use (flow, mask/valve/tube, technique or timing)....SADDER STILL when they don't or won't exhaust every attempt due to lack of information, misinformation, bad luck, unavailability, frustration, or just frigging despair... ....starting in 1985 and on, there was nothing comparable for me. i KNOW O2 saved my sanity, pretty sure it probably saved my life. have seen SO MANY reports of same, with the tears of gratitude nearly leaking from the text, that i will never not be a fervent supporter... ....the success rate now only recently rivalled by the D3 regimen and busting.....COMBINE the 3 and you really got somethin'.... 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted October 30, 2021 Share Posted October 30, 2021 And best part is there is no side effects except for may be drying you out. Although I fell asleep in my long post hit phase last night, and got a little dry. It’s the exception for me. Unless you have severe COPD and you live at a saturation in the 80s there is no such thing as over use. 2 Quote Link to comment Share on other sites More sharing options...
Freud Posted October 30, 2021 Share Posted October 30, 2021 Lactation safe! I know @xxx has several grand kids whose mommas were on his regime or a variation there of... 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 30, 2021 Share Posted October 30, 2021 Here is the first early D3 Regimen protocol: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Batch's kids and grands are all taking the vitamins for general well being. I personally use this Regimen to prevent my clusters and have not had a full cycle in years thanks to it!! All healthy stuff. 2 Quote Link to comment Share on other sites More sharing options...
mhowcroft Posted October 30, 2021 Author Share Posted October 30, 2021 Thank you for all the input and motivation to pursue o2 again. I saw a new OB yesterday who had actually treated mothers with CH before! I was shocked to say the least and relieved about being understood. She agreed with increasing caffeine intake to mimic a steroid and suggesting visiting an ER during an attack for high flow oxygen too. I've only sought emergency help for CH that lasted longer than a few hours. I'm just not keen on an ER visit for relief when I will have another headache roll around in a matter of hours. Im in a rural area outside of Pittsburgh and there are drs. On the list on this website that I'm working on getting in to see but you guys are making me think maybe I can get my OB to prescribe o2 since they suggested it. 3 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 30, 2021 Share Posted October 30, 2021 Yes, yes, yes!!!! Great solution! I would definitely pursue that option. She can state that due to your condition and location, this is an imperative for you. Run the D3 Regimen past her and see what you get there too! Since she is aware and helping CHers now, I suspect that she will approve it, perhaps with some limitations. Being a woman, she definitely understands the need for calcium and D to prevent osteoporosis. Please show her the protocol and see what she thinks. It does have an amazing track record. 4 Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 30, 2021 Share Posted October 30, 2021 (edited) 1 hour ago, mhowcroft said: you guys are making me think maybe I can get my OB to prescribe o2 since they suggested it. ....aint no maybe about it....any physician can prescribe. all 7 or 8 PCP i had before a neuro were fully willing after LISTENING to me, and checking standard medical reference guides ...which list O2 as the #1 CH killer sans triptans. you got jackpot with an CH knowledgeable OB and i'm liking (tho surprised) the caffeine acceptance. an energy drink (2 oz 5-hr energy type) with minimum 120 mg caffeine and 1000 mg taurine downed quickly at first sign of a hit improved oxygen effectiveness greatly for me. some find just the caffeine sufficient....be sure to check with OB for acceptable levels of caffeine and certainly if taurine is ok during pregnancy.... ...see this link for guidance on script writing plus other good stuff... High-Flow Oxygen Therapy for Cluster Headaches | Treatments - Clusterbusters Edited October 30, 2021 by jon019 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 30, 2021 Share Posted October 30, 2021 Jon, isn't it awesome that her OB has had Chers before???? I am thrilled for mhowcroft!! And that the news is spreading in areas that desperately need it!!! Color me very happy! Far too many have had no support for many decades. As in been there, done that!! 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 30, 2021 Share Posted October 30, 2021 18 minutes ago, spiny said: Jon, isn't it awesome that her OB has had Chers before???? I am thrilled for mhowcroft!! And that the news is spreading in areas that desperately need it!!! Color me very happy! Far too many have had no support for many decades. As in been there, done that!! Boo-ya!!! 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 31, 2021 Share Posted October 31, 2021 3 Quote Link to comment Share on other sites More sharing options...
Freud Posted November 1, 2021 Share Posted November 1, 2021 (edited) Id replace the “ 25 of “to “15-25LPM.” Otherwise you need a diagnostic code on it and you’re golden. Please don’t forget the code they will refuse to pay. It’s called a ICD 10 code. Edited November 1, 2021 by Freud 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted November 1, 2021 Share Posted November 1, 2021 9 hours ago, Freud said: Please don’t forget the code they will refuse to pay ...oh wow....YES! i've run into that problem with other scripts....the droids working in insurance offices are all about the coding now... ....one other note. the word "intractable" can be powerful as if it makes CH more "real". when my neuro used that word (in a delightfully harsh and offended letter) for a previously denied triptan script, i all of a sudden got 18/mo approved....(no, i never used that much, but knowing i could get that many was a mental assist).... 2 Quote Link to comment Share on other sites More sharing options...
xxx Posted November 8, 2021 Share Posted November 8, 2021 10,000 IU/day is very safe during pregnancy. Doctors in the know about the benefits of vitamin D3 during pregnancy suggest 20,000 IU/day to 30,000 IU/day vitamin D3 during late stages of pregnancies. It can work relatively fast in controlling/preventing CH. The way I see it, vitamin D3 is the best gift you can give your Tummy Thumper. It builds a strong immune system. 2 Quote Link to comment Share on other sites More sharing options...
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