UMASS Posted May 31, 2017 Share Posted May 31, 2017 Hi All: I guess my subject line says it all. My name is Alex & I'm 51. I've been free of CH for about 13+ years. I'm was so very grateful for not having the pain anymore. Pure joy. Mine started for me when I was 17 or 18. The worse time in terms of the pain was from my mid- 20's to mid 30's, then the frequency started to taper down as the years progressed. By my late 30's they simply never came back. About 4 weeks ago...I felt the warning pain coming on (about 10-15 minutes for me), then I was back in the world of pain again. I've been taking Verapamil (240MG twice a day) for over 25 years. It seems to help, but when the CH decides to get completely unruly, it doesn't work. I remember years ago my doctor put me on the Amazing drug called Sansert/Deseril. It was the ONLY drug to would stop a CH dead in it's tracks. Come to find out the drug has been discontinued because of the possible fibrosis issue. I have an appointment tomorrow (Thursday 6/1) to see a neurologist. Two things I'm hoping for. A drug that out there to prevent them or (the best scenario) is the CH pack-up again & go away. As I get older my constitution isn't as strong as it was 20 years ago & it effects me even more now. Has anyone else had a serious hiatus (years) from CH & they came back? Thanks for listening everyone! Alex Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 31, 2017 Share Posted May 31, 2017 Alex, I don't think there's been much progress on pharmaceutical preventives. The in-cycle standard for verap can be twice what you're now taking (960). You should check out the vitamin D3 regimen in the ClusterBuster Files section here as an excellent potential long-term preventive or at least reducer of hits and severity. If you used oxygen as an abortive 13 years ago and it didn't help, please note that we have learned that higher flows and the mask specifically designed for CH (and some other strategies) make O2 effective for practically everyone who who uses it these days. A bunch of other smaller tactics that help have been identified, mostly by the "citizen scientists" at sites like this. Quickly drinking an energy shot at the first sign of an attack; taking melatonin at night, starting at about 9mg and working up; taking Benadryl (recommended dose) morning and night during high pollen seasons (not Benadryl and melatonin, though) . . . High pollen seems to exacerbate CH. And of course, there are many here who will tell you from experience that busting is the best preventive/cycle-ender. Quote Link to comment Share on other sites More sharing options...
spiny Posted May 31, 2017 Share Posted May 31, 2017 Welcome Alex! Yes, I had a nice hiatus when I was younger. It was nice! Took Tegretol for years to keep it at bay. In the Clusterbuster Files you will find info on the D3 Regimen. It has worked wonders for a lot of people. While I have not gone PF (pain free) on it like some have, it has slowed the ramp up and lowered the intensity of my hits. Amazing for 'just vitamins'. And it can start to work quickly too! I would bet that if you had your D3 levels checked, they would be low. Most of us are. Push for the O2 at your appt.!!! It is the best abortive we have. I grab some caffeine and slam it down on my way to the O2. Cuts abort time by about half. There is a thread on O2 in the same files referenced above. It provides excellent advice on how to get the most out of your O2. O2 can be your best friend with the right flow rate (25 to 25lpm) and the right non-rebreather mask. As CHF stated, caffeine at the very beginning of a hit can prevent it sometimes. Some want Energy drinks or shots and others use coffee. Some take it hot and some take it cold. You will figure out which works best for you. You might be prescribed Imitrex in a nasal spray or shot form. Your insurance normally will only cover 9 shots per month and you can only take 2 in a 24 hour period. There is a way to break the system open and get 2 or 3 shots out of each one. I believe the shots are 6mg? Anyway, 2 is sufficient for most and 3 works well for anyone that I know of. Trex can be hard on your heart, so don't exceed dosage limits. Caffeine can kill a hit if taken early enough. If you are getting nocturnal hits, sleeping partially reclined in a recliner with your head above your heart can buy you some ZZZZZ's. And there is the busting method. That is discussed on the closed boards - Theory and Implementation and Share Your Busting Stories. And there is a lot of info on it in the Clusterbuster Files as well. You will be reading a lot! A lot of people miss Sansert. ATB spiny 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 31, 2017 Share Posted May 31, 2017 Regarding the trex injections, yes they are typically 6mg (although there is a 4mg version). Info on breaking into the autoinjector is in the file "Extending Imitrex," which is on p1 or p2 of the ClusterBuster Files. Quote Link to comment Share on other sites More sharing options...
UMASS Posted June 1, 2017 Author Share Posted June 1, 2017 CHfather & Spiny. Many thanks for your insight. The neurologist prescribed me O2 & a 30 day supply of prednisone. She want's to see if that helps. She mentioned that there might be a chance that the CH will withdraw again. She did bump-up my Verapamil to 960mg a day like CHFather mentioned. After I wrote this post (before seeing the doctor) I had one small CH that quickly went away. I haven't had one since (fingers crossed) She also mentioned that Sansert can be made by a compound company as a last resort. I'm just hoping that it's a "passing" episode & I'll be free again of the madness. I'll chime back & let you know how I make out. Thanks again for your help. Quote Link to comment Share on other sites More sharing options...
UMASS Posted June 1, 2017 Author Share Posted June 1, 2017 BTW...Can anyone point me to the ClusterBuster Files? I can't seem to find it. Quick Edit: I'm a knucklehead. I found it. Quote Link to comment Share on other sites More sharing options...
spiny Posted June 1, 2017 Share Posted June 1, 2017 You are now into some serious good reading sir. Glad to know it too. Ask questions if you read something that is not making sense. Some material is old too regarding how much of this and that. I cracked up at the knucklehead statement. Long time since I heard that favorite! Quote Link to comment Share on other sites More sharing options...
UMASS Posted June 2, 2017 Author Share Posted June 2, 2017 17 hours ago, spiny said: You are now into some serious good reading sir. Glad to know it too. Ask questions if you read something that is not making sense. Some material is old too regarding how much of this and that. I cracked up at the knucklehead statement. Long time since I heard that favorite! Spiny: Remember I'm semi-old. "Knucklehead" is kind of an old school term. Glad I could make you chuckle! Two days no CH. Fingers crossed. 02 will be delivered on Monday. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 2, 2017 Share Posted June 2, 2017 Have the people who deliver your O2 set it up for you and, if they know, show you how to use it. (They probably are just delivery people who won't know how to use it, but do have them set it up, so you can be sure it's working properly.) You might want to call them and check on what they intend to bring you. Most medical oxygen suppliers have very little experience with CH patients, and the prescription is often very general and vague. You should get at least one large tank (an M or H tank), about 3' tall, and at least one smaller tank (an E tank), around 2' tall. The smaller one is for portability -- taking it in your car, for example. The taller tank uses a different regulator than the smaller one. The regulator(s) should be at least 15lpm -- you could ask whether they have a 25lpm one. And you should be getting at least one non-rebreather mask. (Prescriptions do typically specify lpm and mask type.) You do not want a concentrator -- a machine that makes O2 out of room air, and you do not want nasal cannula. Often, they'll bring just one or two E tanks, each of which lasts less than 45 minutes. It will be easier for them if they bring you at least one M or H tank, so they don't have to keep coming back to resupply you. And you might see whether they're planning to bring you a stand for the tanks, or at least for the big one. Some of this stuff will of course add to your bill or co-pay. Since maybe your cycle is passing, you might want to just get the basics now so you're not paying for things you don't need right now. Quote Link to comment Share on other sites More sharing options...
UMASS Posted June 7, 2017 Author Share Posted June 7, 2017 CH Father: I was blessed. The oxygen company guy knew about CH's. They gave me an M tank (& stand) with a regulator & the correct mask.My Blue Cross/Blue Shield of Mass. picked-up that tab! Showed me how to use it in detail. Here's the thing...(knock on wood) I think the tapered prednisone broke my cycle completely (I think) I'm loving it! Going back to my neurologist on 06/23 for a check-up! Life is good right now! 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted June 8, 2017 Share Posted June 8, 2017 That is wonderful to read UMASS!!! I have had pred end a cycle for me. Of course it was not my standard Sept, lay low time either!!! My guess is that if you have been off the pred for 3-4 days and no hits, you are likely good to go. Suggestion. I keep a taper pack on hand so if needed due to travel or weather and I am likely to get a random cycle started, I take it. Usually happens about twice a year. And it is just the standard taper pack. 1 Quote Link to comment Share on other sites More sharing options...
UMASS Posted June 9, 2017 Author Share Posted June 9, 2017 Spiny: Thanks my CH friend. I think I might have found the issue that "may" have triggered my CH after 13 years. I'm still a smoker (I know I need to stop) It dawned on me that I changed from Parliament Lights to Marboro "Red Label" about the time my CH started again (one week later) I decided I really need to stop outright. I had a serious case of Bronchitis about 2-3 years ago & my doctor gave me Predisone & it worked within hours! It's done the same for me with my CH (day 5 now) I'll ask for a couple of refills when I visit my neruo. in a couple of weeks. I'm hoping that I go dormant again. From what I gather Predisone isn't the best for your body in general, hence the tapper. But...I'll take it if it get's me out of pain. Be well Spiny. 2 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.