Renee Posted October 22, 2014 Share Posted October 22, 2014 Ive been jumping around reading various posts and overwhelmed with info and great input from members. Thinking of getting second doc opinion for my husbands cluster treatment. Saw your list of recommended doctors in Houston but would like to know if any members have actually used any of them. Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 22, 2014 Share Posted October 22, 2014 Renee, I can't answer your specific question, but if you tell us more about your husband's situation (episodic or chronic, years with CH, treatments tried, why you're looking for a second opinion, etc.) I'll bet we can at least help you/him be well prepared for that appointment. I'm sure you've read already that oxygen, with a proper flow rate and non-rebreather mask (or, better, the mask made specifically for CH) is the #1 essential. After that, most folks here have opinions, based on experience and study, about the other pharmaceutical options (most typically, that would probably be verapamil, prednisone, and imitrex, alone or in combination, and maybe topiramate and a whole bunch of other possibilities, such as gabapentin and lithium). You probably have also read enough here to know that practically everyone here would urge him to consider busting as the highest-effectiveness, lowest-side-effect treatment there is. Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted October 22, 2014 Share Posted October 22, 2014 Hey Renee! and Welcome! First off I want to thank you for being a supporter. Supporters have a tough job, but we need yall so much, and too often your contributions are not recognized due to the intense pain of a headbanger. So HUGS and thank you so much! As for everything else, I am in total agreement with CHFather, he is our Yoda, and I can't even fathom all of the knowledge he has about CH. I can tell you from my own experience to please tell your hubby not to get too happy with the Imitrex if he is chronic. None of the other stuff worked for me, but trex was a great abortive and prevention med. (until I went chronic) the thing is....if you take trex to prevent the attacks, things will be shiny for about a year. Then you realize that you are taking more and more....then the side effects start coming into play, and the CH gets worse and worse. (I havent even mentioned the expense) But with the side effects you start to realize that even though these attacks put you through 90 minutes of holy hell, they dont cause any permanent damage (at least physically) and that you can suffer through the attacks 3-6 times a day, or you can have a heart attack and die. I chose the suffering. And I can tell you that getting off the Trex is one of the hardest things I have ever done. Holding that shot in your hand knowing it will make the pain stop, omg its terrible. There is so much info on this site about other ways to treat this condition without doing permanent damage to your body. Just please have him read it all before he makes any decisions. HUGS and PFD to your hubby! Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted October 22, 2014 Share Posted October 22, 2014 Renee, I 2nd CHFathers note (and Fabac's ). Please give us some history on your hubby? There's 1,000 X more knowledge on this board than a pile of "headache" Dr. specialists (not including Boston Doc in that statement :)) Boston Doc ROCKS! [smiley=vrolijk_26.gif] There's quite a few cheap and easy things he can do to reduce his pain level / duration. Not to mention a TON of things he can do to prepare and/or educate his Dr to better target his treatment. Whatever you do don't just accept a script from the Dr, as a cure. I'd say 10 to 1 most of the Dr scripted stuff causes more issues long term than the advice / natural remedies discussed on this board From me and I know a TON of others here, thanks for being an advocate for your hubby!!! So many of us with CH wouldn't be around without some of the awesome supporters out there! You're in a ENORMOUSLY respected category of people, for being his advocate (especially at times that he can't be)... J Quote Link to comment Share on other sites More sharing options...
Renee Posted October 23, 2014 Author Share Posted October 23, 2014 Thank you to all who have responded to my general inquiry about doctors. We actually like the doctor we have however I wonder about options. He even suggested we get into this site to see what other clusterheads are doing. We are into 4 years of CH Diagnosis which did not come quickly and with much pain and suffering. Finally got combination of preventative meds that seemed to work, oxygen and sumatriptan as abortives. (Cant afford imitrex) Over the last year has become what I guess is more chronic. Before that he did have breaks in the headaches for a few months at a time. "My Guy" is resistant to documenting and keeping a headache diary so it makes it difficult to look back and see a good timeline. He was given a series of IV high dose prednisone infusions in an attempt to beak a cycle about a year ago . Did not break it but did slow down occurances and intensity of headaches. This last year has been living primarily in "the shadows" (I just read that phrase over the weekend on this site....great way to describe it) Nagging, persistant, occurances 10-20 through the day and night. Pressure, drainage, congestion, little sleep and fear of escalating to a full blown attack. We are considering SPG block at our drs recommendation but it appears to me it is a very short term fix if it works at all. We have not discussed other blocks. He is on Verapamil and Topamax as preventative. Increasing confusion and memory loss with Topamax. Especially difficult the last month as dr RX Chantix for him in an attempt to stop smoking. Extreme frustration and moodiness. Now off that and we want to DC Topamax as well. Tried Topamax XR but no better. Dr just ordered Indomethacin for him as we talked about trying other meds. We discussed lithium -he's never taken. Side effects of that don't seem much better but if it will keep him out of a cycle I guess its worth a try. He says he is so tired of feeling stupid. He has a job that requires a lot of detail and hes really struggling to maintain work day to day. He takes his O2 tank to work uses it and sumatritan(1-2 a day-cuts in half) when he feels something coming on. As I have been reading the info on indomethacin I read that its use has been highly effective in treating chronic paroxysmal hemicranias. A subtype of clusters? Another diagnosis? Dr never mentioned details of why we are trying it. I assumed just another pill to try along with everything else. He has only taken 2 days worth, increasing amount over next week. I'll be anxious to see if any results. We see doc next week . Want to try D3 and ask about some of the other remedies mentioned I read on this site over the weekend. Busting is not a consideration at this time. Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 23, 2014 Share Posted October 23, 2014 Yes, indomethacin is good for the hemicranias (paroxysmal and continua), but pretty much worthless for CH. I would think he'll know pretty quick whether it's working or not. It can be very hard on the stomach/digestive system, and is sometimes prescribed along with something like nexium for protection. (Since I might sound like a doctor here, I should make it clear that I'm not.) Seems he's tried, or is on the verge of trying, all the major stuff, and is now looking at last resorts. Almost certainly the doctor won't know anything about D3, and there's a good chance she/he will tell you it's too much D3. Which it isn't, or at least doesn't give any indication of being. Get a blood test that includes vitamin D level (pretty standard) and testosterone (sometimes a culprit). If he hasn't tried energy drinks/shots, or at least a strong cup of coffee, to abort, he should do that. Drink it down at the first sign of an attack. Some people find that melatonin at night is beneficial--again, usually at doses that would be considered high, starting at 6-9 mg. and working up as high as 20 or more. I wonder whether your doctor was actually suggesting www.clusterheadaches.com (where conventional treatments are discussed a lot). We try hard not to be argumentative here, but I gotta say that looking at his situation, if the indomethacin doesn't work (if it does, it would mean he almost certainly doesn't have CH), I would seriously reconsider the idea that "busting is not a consideration at this time." You might want to take a look at this thread (and the blog post linked to in the first post), from a guy who said the same thing: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1411480973. You don't need to respond to this -- like I say, we're not here to argue -- but just to be clear, there are effective busting strategies that involve no or almost no psychedelic experience at all. They can easily be pursued with close to zero legal risk. He wouldn't feel stupid all the time (as you put it), and he could possibly break free from all that he's suffering. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 23, 2014 Share Posted October 23, 2014 Can't blame y'all at all for wanting to discontinue the topomax Renee - having to attempt to do a job requiring lots of detail work while on the notorious "dope-o-max" and it's infamous side effects of dumbing of the brain and killing of the memory sounds like a major, extremely unwelcome addition to the horror show. I can imagine your doc may be just trying the indo in order to rule out any hemicrania action..... People here have been able to bust while on Verap, including our pal Dan featured in this National Geographic segment airing internationally: https://www.youtube.com/watch?v=qFuL7pcShDk ...CHFather, he is our Yoda, and I can't even fathom all of the knowledge he has about CH... Good one, Fabac, and of course 100% agreed, even if I'm not personally as Star Wars-centric as the average bear. Hmmmm I think I may have just outed myself as having been Jellystone Park-centric as a child though. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted October 23, 2014 Share Posted October 23, 2014 Renee, Trying to be positive, but so many of those scripted meds to be helpful (at the doses needed to help CH) can be VERY destructive to one's body. There are people on the board that have had to have hip replacements because of prednisone, partially blind because of lithium, heart issues because of Verapamil etc. etc. Seeds or M, have virtually no side effects, No toxicity, are out of your system in a matter of hours, and aren't tested with standard drug tests. Not to mention getting and staying pain free is awesome!!! I had never taken any drugs besides trying pot twice (both times didn't care for it). I had a pretty hard time getting up to trying seeds /or M, but Sooooooo glad I did. My life is 1,000% better now than it ever was with the physical and emotional issues of my CH hitting me over and over (not to mention when it wasn't around the fear of it was always there). No longer is that an issue Off my soap box oh crud, that was a bread box... Now I gotta go back to the grocery store... jk... J Quote Link to comment Share on other sites More sharing options...
didgens Posted October 24, 2014 Share Posted October 24, 2014 you talked about drainage and congestion. can you elaborate please (this is just my personal line of interest) also does he suffer from heart burn ? if yes does he take anything for it ? thanks Quote Link to comment Share on other sites More sharing options...
razorPP Posted October 26, 2014 Share Posted October 26, 2014 hi renee and welcome, your post reads like how my journey in the ch process started out. a list of drugs to try, none really touched the ch pain. but it was what the doctors knew to try. after 2.5.years i realized that i had to take my own ch health plan over and find the best possible things for me. i read and re read and tried to comprehend side effects , what this drugs does and what brain function are being effected, ect... then you get a little knowledge and you what to be part of the process and then you get labeled non compliant by your doctors, no i just choose what you are going to try next and for how long. so 7 years later, many doctors, second opinions, no more. i still see my nero and i tell her what i'm doing. i have been on a more natural course for 3.5 years now with the good folks here at clusterbusters. i take d3, lowers my pain, lsa seeds, legal to get, no trip either, only natural stuff for me now, can not take the side effect any more, yoga, meditation, still lots to read and learn, you go through a process with ch and you will find a place that's best for you, thank you for supporting, peace Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted October 27, 2014 Share Posted October 27, 2014 ^^^^^^^ exactly! Quote Link to comment Share on other sites More sharing options...
ToniEvo Posted October 28, 2014 Share Posted October 28, 2014 I ditto the thoughts on Toparimate/Topamax - came off mine yesterday...My brain hasn't been my own! Memory is rubbish; I'm a danger to other road users; can't think straight; words come out wrong; terrible pressure in my left eye and temple; vision comes and goes... It must do more harm than good!! I'm going to give the seeds a try!! Like the real experts say on here, " they're natural!" Also, definitely give the Vitamin regime a go - it will make a difference Best wishes to you Quote Link to comment Share on other sites More sharing options...
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