fattestfoot Posted December 10, 2019 Share Posted December 10, 2019 I've had a much more intense cycle that started in November (normally a September CH), and I finally went to a neurologist. I was able to get him to prescribe 6mg Imitrex, but I'm a bit nervous about the injection site. I have pretty low body fat, and there's really nowhere on my thigh that feels "fatty" enough to inject. I'm worried that I'll be injecting into either my quad or hamstrings, depending on where I choose (similar problem with my arms). Googling this I haven't found any similar question, so I'm curious what to do. I'm basically using them as a last resort, but I don't want to have to use it and cause a serious health problem as a result of administering the shot incorrectly. Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 10, 2019 Share Posted December 10, 2019 Welcome ff, ...it's a short needle...I'm skinny and went for the thigh....mostly used insulin hypos and drew 2 mg from vials...switched to Zomig NS 5 mg as it was as effective w/o the ooky side effects and no jab...suggest you ask your pharmacist (they have Doctorates now btw)... best jonathan Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 10, 2019 Share Posted December 10, 2019 You can inject it in your abdomen if you have a little fat there to grab (I'd be happy to loan you some). But as jon' says, it's a short needle -- the autoinjector goes in only about a quarter of an inch. However, if you use the method described here for splitting doses -- https://clusterbusters.org/forums/topic/2446-extending-imitrex/ -- you'll be injecting by hand, and you'll probably be better able to pick the spot where you want to inject. Virtually no one needs 6mg; most people only need 2 or maybe 3. (Again, as jon' says, getting it prescribed in vials so you can more easily measure out your own doses is a nice way of doing it.) Are you doing all the sensible stuff that makes it so your need for Trex will be rare? Oxygen, D3, etc? Considering busting? This file might be helpful for an overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Quote Link to comment Share on other sites More sharing options...
fattestfoot Posted December 10, 2019 Author Share Posted December 10, 2019 Bit of history, I had "mild" clusters starting in September 2015. In 2017 after my 3rd year (each September), I found the vitamin D3 regimen. September 2018 and 2019 passed without headaches (started the regimen last week of August and took through first week of October). But then I started a new cycle in mid-November. I was caught off guard without the vitamins. This cycle has been more typical of CH's, with more frequent attacks and much more painful (what used to be 7's as the worst are now 9's and 10's). Because my previous cycles had been so mild, and the vitamin D3 thing worked so well, I'd never sought out a doctor. After a 10/10 last Thursday, I got an emergency appointment with a neurologist Friday (4 days ago). He put me on Indomethacin and I had to beg to get some kind of treatment, which ended up being Imitrex. I mentioned oxygen and he said it'd be almost impossible to prescribe. I'm not sure if that's legitimate, but I have seen that a lot of insurance doesn't like to pay for it. This is the first cycle I've tried other methods. So far, energy drinks seem to work decently well, but since I'm limited to probably 2 a day, if I get multiple shadows I'm torn on when to take them. I've got a clearance, so "alternative" illegal substances are off the table. Outside of that, I tried a vibrator to my eye socket. That...mostly just distracted a bit, but didn't bust it. That's about the extent (I'm only 3.5 weeks into this new, hellish cycle). As I said, the Imitrex is basically a last resort if I get something in the 9-10 pain range that I just can't handle. I'm curious if using it gluteal would work? Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted December 10, 2019 Share Posted December 10, 2019 Yes the backside is ok but as others have suggested abdomen and thigh work. Just pinch the skin to raise it up. Even if you are 3% body fat there is no way you’ll go intramuscular. You should be able to get by with 2 mg injections if you get vials 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 10, 2019 Share Posted December 10, 2019 (edited) 3 hours ago, fattestfoot said: I mentioned oxygen and he said it'd be almost impossible to prescribe. I'm not sure if that's legitimate, but I have seen that a lot of insurance doesn't like to pay for it. Gosh, it's sickening to read this over and over, year after year. First of all, he can prescribe it whether or not you can get your insurance to cover it. You do have the option of paying out of pocket. Secondly, sometimes insurance coverage is a breeze, and sometimes it can be a battle. My belief is that most doctors -- including most neurologists -- don't know how to write a prescription for O2 for CH, or they have no patients with high-flow oxygen and don't know what to expect, so they make up excuses for not prescribing it. The only alternative explanations are that that they either have no idea about the suffering of CH and/or don't give a crap about it and/or think it's fine to damage you physically and financially with Trex instead. In any event, you can try to pursue the prescription, or you can set up a system with welding O2, as discussed in the file I linked you to. I'm a person who has a lot of curiosity about Indomethacin. If it's not too much to ask, how much were you prescribed? And would you please check back in to report on whether it's helping you? You know, I imagine, that Indomethacin is not typically prescribed for CH (because it almost never helps CH), but for conditions that look like CH but aren't. It's hard on the gut, so it should be taken along with something to protect the stomach lining (Prevacid, Prilosec, that kind of thing). It's sometimes prescribed early in treatment to either rule out those other conditions (hemicranias) or rule them in. I'm usually an advocate for Indomethacin, but I gotta say you sure sound like you have CH. Edited December 10, 2019 by CHfather Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 10, 2019 Share Posted December 10, 2019 ...I share CHf's consternation...been hearing same for decades...which is why you need a HEADACHE SPECIALIST....most neuros are clueless (his O2 comment proving same)...in my experience, a specialist knows exactly what a cluster headache patient is going thru and will FIGHT for you with insurance droids...this includes O2 and triptans. I had to fight 7 health ins companies for one or both... and won every time...it actually helped the battle with the beast in giving me a dragon to slay.... ....and BTW, an Indo trial is not a bad idea IF the diagnosis for CH is only a maybe.....give it a good shot tho.... Quote Link to comment Share on other sites More sharing options...
fattestfoot Posted December 10, 2019 Author Share Posted December 10, 2019 I'm on day 4 of Indomethacin, 150mg a day (3x 50mg). So far, I'm still getting clusters, but I don't know if it needs time to work. My guess would be no since it's an NSAID. He didn't prescribe me anything else to take with it. I'm going to continue taking it through this Friday for sure, which will be a full week, and also coincides with my follow-up with the neuro. But because of how harsh it is, I'm considering stopping it at that point unless I see a complete remission of headaches. Part of the problem I have with a lot of this is I may be coming to the end of this cycle (although who knows, because this is the first November/December cycle). So if it goes away, it may have absolutely nothing to do with the Indomethacin. Similarly, the vitamin D3 regimen isn't working this time (blood work on Friday had me at 124ng/mL). So did it work in previous years, or was I just in a 2 year relapse? Or maybe it only works for me if it's already in my system prior to the cycle starting? I appreciate all the help! I know a lot of this is probably repetitive for people who've had CH for a long time, but the information is all over the place and sometimes difficult to find. Quote Link to comment Share on other sites More sharing options...
spiny Posted December 10, 2019 Share Posted December 10, 2019 CHF has a lovely link on the effectiveness of O2 and one you can print out to take to your doctor too. His job is to fight for you! Not blow you off. I would agree with the dropping of the Indo based on your experience with it. It is a drug of elimination! It did not do that, so why take it? You are the second person I know who calls it the dragon! I am the other. On bad days it is the octopus. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 10, 2019 Share Posted December 10, 2019 This is from the American Headache Society, 2018, regarding Indomethacin for hemicrania: >>>Indomethacin (Indocin) is a medication that fights inflammation, similar to ibuprofen or naproxen, but indomethacin is unique in that it is the only medication that functions as a key in the lock to stop HC. Usually indomethacin is started at a low dose, such as 25 mg, taken 3 times per day with meals. The dose is then increased until the head pain is relieved. Doses can sometimes reach 75 mg 3 times per day or more before the pain is fully blocked. When taking this medication, stomach protection against ulcers and bleeding is generally required. Proton pump inhibitors, such as omeprazole or lansoprazole, or H2 receptor antagonists, such as ranitidine or famotidine, can provide such protection. Most people tolerate indomethacin, particularly in lower doses. Unfortunately, others are unable to tolerate indomethacin at all, or in the doses needed to relieve their pain.<<< https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf I'm not saying you should be taking it or shouldn't; just that this seems to be what's needed to give it a reasonable test (and possibly tolerate it). Quote Link to comment Share on other sites More sharing options...
spiny Posted December 10, 2019 Share Posted December 10, 2019 CHF - Could you post the link for the O2 printout? Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 10, 2019 Share Posted December 10, 2019 Here's a link to the JAMA article about high-flow O2: https://jamanetwork.com/journals/jama/fullarticle/185035 1 Quote Link to comment Share on other sites More sharing options...
Rainmaker Posted January 7, 2020 Share Posted January 7, 2020 On 12/9/2019 at 11:49 PM, CHfather said: I'm a person who has a lot of curiosity about Indomethacin. If it's not too much to ask, how much were you prescribed? And would you please check back in to report on whether it's helping you? You know, I imagine, that Indomethacin is not typically prescribed for CH (because it almost never helps CH), but for conditions that look like CH but aren't. It's hard on the gut, so it should be taken along with something to protect the stomach lining (Prevacid, Prilosec, that kind of thing). It's sometimes prescribed early in treatment to either rule out those other conditions (hemicranias) or rule them in. I'm usually an advocate for Indomethacin, but I gotta say you sure sound like you have CH. Hi CHFather You mentioned that you have a curiosity about Indomethacin so I thought I would weigh in that I took it for awhile with zero results on the headaches. You are correct that you must be careful about damaging the stomach lining however what doctors don't tell you is that the meds to protect your stomach can cause a nasty condition called SIBO. SIBO is an imbalance in the flora of your small intestine that leads to bloating, diarrhea, constipation and other gastric problems, and is very difficult to reverse. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 7, 2020 Share Posted January 7, 2020 I'm sorry the Indomethacin didn't work for you. Regarding SIBO, all I can say is yikes, and if that also happened to you, I'm sorry to hear that, too. https://www.ncbi.nlm.nih.gov/pubmed/28770351 Quote Link to comment Share on other sites More sharing options...
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