Annette Jones Posted March 4, 2022 Share Posted March 4, 2022 My headaches have become so bad that I've told the doctor that if they knew what nerve was causing it I'd be willing for them to cut that nerve even if it meant losing part of my facial control. I don't know what to do anymore and now I can't get more sumatriptan my doctor is being a jerk I start with a new neurologist on Tuesday we'll see what he says. I cannot handle these headaches anymore 6 years of increasing frequency and intensity. I've practically begged for help. I need to find something that will work Quote Link to comment Share on other sites More sharing options...
FunTimes Posted March 4, 2022 Share Posted March 4, 2022 What other medications are you taking? How else do you manage your clusters? You want to look into getting oxygen now it will change and save your life. You can abort a cluster in as little as 5 minutes with the correct setup 6 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 4, 2022 Share Posted March 4, 2022 You should also look into the D3 regimen it really has helped me (has not stopped them but tampered down the intensity big time). There are more options than the triptans which in the past have drawn my cycle out longer than normal. You may also want to have a peak at the blue ribbon at the top of the forum ("new users read here") as that is an option that works well for many I am told. 3 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 5, 2022 Share Posted March 5, 2022 What FunPiko said. Or was it BoscoTimes? Anyway, those two individuals dispensed the big, solid, and for so many if us life altering clues which could make all the difference in your search for something that will work. I'll just drill down into a bit more of the detail realm: On 3/4/2022 at 12:35 PM, Annette Jones said: I can't get more sumatriptan What form of Sumatriptan are you using? If it's 6 mg injections, that's an overdose, but the good news is that since you only need 2 mg you can triple your supply with the imitrex tip - extending imitrex. Here's hoping the new neurologist may be a headache specialist, since that is the type typically in the know. 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 5, 2022 Share Posted March 5, 2022 Here's a kind of overview of CH treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There's some additional information in the reply posts in that thread. 2 Quote Link to comment Share on other sites More sharing options...
Annette Jones Posted March 6, 2022 Author Share Posted March 6, 2022 I'm also taking Verapamil. I just had the end of a headache not even 5 minutes ago my sumatriptan is the nasal spray Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 6, 2022 Share Posted March 6, 2022 I'm so sorry you are going through this at the same time I feel that it's important to tell you that you are leaving out details that could help someone on here help you. How many milligrams what type.. extended release or rapid? Have you ever attempted busting? Have you started the D reg? .. I feel it's important to be specific although I understand how hard it can be during an attack... I sure pray for you! Folks here can help just try and line out all that you are on and what you have and have not tried. 3 Quote Link to comment Share on other sites More sharing options...
snafu Posted March 6, 2022 Share Posted March 6, 2022 you are playing with fire. when i was abusing zomig my headaches got progressively stronger and longer in duration, also the frequency saw an uptick (up to 10 hits a day) 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted March 6, 2022 Share Posted March 6, 2022 5 hours ago, BoscoPiko said: I'm so sorry you are going through this at the same time I feel that it's important to tell you that you are leaving out details that could help someone on here help you. How many milligrams what type.. extended release or rapid? Have you ever attempted busting? Have you started the D reg? .. I feel it's important to be specific although I understand how hard it can be during an attack... I sure pray for you! Folks here can help just try and line out all that you are on and what you have and have not tried. We need this info to help out .so sorry your going though hell at present . 1 Quote Link to comment Share on other sites More sharing options...
Annette Jones Posted March 10, 2022 Author Share Posted March 10, 2022 here goes. I went to a new neurologist yesterday he increased my Verapamil to 600 mg. Is sumatriptan I take as a nasal spray and it's 20 mg. He gave me an order for oxygen, my insurance won't pay for it I can't afford to get it. And I just found out today that my insurance has cut me back on the sumatriptan from three boxes every 21 days, two boxes every 30 days. I don't get many breaks from the Clusters. My last bout what's 2 weeks straight up to for headaches a day. Then I have 2 days off and started getting them again last night one last night and one late morning which is unusual. I usually get them from late afternoon tonight time. Something has got to work I can't handle these headaches. Quote Link to comment Share on other sites More sharing options...
Annette Jones Posted March 10, 2022 Author Share Posted March 10, 2022 Also I didn't know there was other ways to try to fight these things. check into the vitamin D thing cuz I have osteoporosis also and vitamin D won't hurt me. Someone else pointed out that the sumatriptan can make the headaches worse and I believe that starting to happen. Having one of these headaches for 15 minutes to half an hour is bad enough never mind if I don't take the sumatriptan the longest I've had one last was an hour. But back then they weren't as intense. I did tell the doctor that I would be willing for them to cut the nerve that causes the headaches. Even if it meant losing facial movement. If I don't find something that will help I'm afraid of what I might do. I don't get much time off from my headaches the most days I've had off in the past 2 years is 4 days. Then they'll go for couple weeks anyways Quote Link to comment Share on other sites More sharing options...
jon019 Posted March 10, 2022 Share Posted March 10, 2022 1 hour ago, Annette Jones said: did tell the doctor that I would be willing for them to cut the nerve that causes the headaches. Even if it meant losing facial movement ....DON'T...doesn't work....all you end up with is a droopy face with the same pain...or a droopy face, with the pain on the OTHER side. if you find a doc who is willing to do it...it's the WRONG doc...RUN! 3 Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 10, 2022 Share Posted March 10, 2022 4 hours ago, Annette Jones said: he increased my Verapamil to 600 mg That might help. Some people need still more -- 960 mg or more. Is the verapamil instant release or extended? Most people seem to get better results with instant than with extended. Yes, get on the D3 regimen ASAP -- it's a more effective preventive than verap with a lot fewer potential side effects. 4 hours ago, Annette Jones said: He gave me an order for oxygen, my insurance won't pay for it I can't afford to get it. There is practically no insurance that won't cover O2, but sometimes you do have to fight for it. I am quoting a passage here from a post by jon019: "....OXYGEN!!!....life changer...saved my sanity, perhaps my life. over the yrs sometimes insurance covered it, sometimes not (always appeal any denial, for O2 have your doc write a letter of medical necessity). note that Medicare has just now approved its use for CH, and many insurers follow their lead. when not covered, i did self pay. either way, my out of pocket was about the same. cheap by any measure, especially compared to triptans like Imitrex, no side effects, fast when flow, mask and technique dialed in, more portable than the stereotype would indicate. don't let anybody dump a concentrator on you.......many a clusterhead bypasses all this nonsense and uses welding O2, "same stuff out of the same spigot"...cheaper yet, widely available....no insurance droids to get in the way. just don't tell 'em you gonna breathe it..." As we have discussed and jon' mentions, welding O2 is a relatively low-cost option. Easy to get, set up, and use. I don't want to oppress you about things you don't have, but getting oxygen is worth almost any sacrifice you have to make. I hope you looked at the link I gave you up above, particularly the part of that file headed "Treatments without oxygen..." None of those are as effective as O2 would be or the D3 regimen can be, but some might help you. 1 Quote Link to comment Share on other sites More sharing options...
snafu Posted March 10, 2022 Share Posted March 10, 2022 you are in a dire place, i think most of us have been at. that's why it's important to have an arsenal of remedies ready. like a boyscout you have to always be prepared. Your List should include: oxygen oxygen!! oxygen!!! vitamin d3 protocol+cofactors Tryptamines (LSD, MM, Seeds) IMHO both verapamil and triptans like zomig are a double edge sword. they take the edge off and mask the cluster but i swear to god those medications made my condition worse. i can not prove it but i am almost certain that that is the case. i have read numerous reports from sufferers over the years that state the same. bonus as time goes on you will have to up the verapamil, that's how the story goes. and at some point you start feeling the side effects. i felt like a zombie, with severy constipation and waterpooling in my legs, mind you i am a very active and athletic person. it was hell and not worth it. oxygen and magic mushrooms/lsd saved my life and my sanity. i am forever grateful to this board it's initiator and members. the drugs doctos perscribe are all offlabel use...make what you will of that. good luck! 5 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 11, 2022 Share Posted March 11, 2022 On 3/9/2022 at 11:15 PM, snugz365 said: Tryptamines (LSD, MM, Seeds) Jeesh .. I really need to grow some already and try this alternative method...I wish I wasn't so apprehensive .. maybe I'm just not at the wits end I need to be yet. Anyhoo I sure hope you are getting an occasional EKG at that dosage of verapamil (I was at that level and had to cut back due to heart issues) (some doc's won't require it and you may have to request). Positive thoughts (even if most likely won't help) sent your way! 3 Quote Link to comment Share on other sites More sharing options...
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