Leaderboard

Just want to say a BIG THANK YOU to Bejeeber,Spiny,Freud,CHfather,Jon019,Dallas Denny,Xboss and Fun times I'm pain free got my sanity back feel like I've got my life back, got so many more tool to fight the beast when he decides to reappear. As I said I'd never spoke to any1 who has suffered with this s--t before I found you guys and this forum , THANKS again

Happy to see your post Shaun!! As I've said on many occasions here over the years, "One more cluster soul out of the darkness and into the light!" DD

I am glad you found this site, there are great people on here that will help you out a ton. Your headaches sound a lot like mine. I have clusters and migraines which I have been told is rare, lucky me! I can not take imitrex as it makes my headaches worse, but I can take Zomig and it works wonders. Be careful there is a rabbit hole that comes with triptans that can send you into rebound headaches that will not go away unless you stop taking them and suffer through a few days. Prednisone is a life saver but you have to be careful with how long you are on it as it is bad for bones and liniments. O2 is great also if you cant get a prescription and a high flow O2 regulator rent a oxygen bottle from a welding supply and get a welding regulator.

Everyone has covered it pretty darn well Shaun. I find utter delight in helping one person become pain free. Each of them are special. And I consider them all friends. Stay safe, happy, and loving. Life will be great!

I feel your pain @Dallas Dennyand @CHfather I too have a bulging C5&6 as a result from my scar contracture and looking down through surgical loops 10+ hrs a day for years. I took a break from practice bc I couldn’t take the pain. I was referred to a really good spinal surgeon and he said it’s bad for my age but if I started w surgery now I’d regret it bc they need to be revised. So the later you start the better off you are. I finally got my burn scars revised and the bulging improved (I did do PT to no help). Sadly in between my 4 and 5 surgeries I got CCH. The neck pain improved. But now my scars need to be released again and I started getting neck and shoulder pain, numbness in fingers, dropping things... I asked for trigger point injections and it was the best decision I ever made!!! They do my neck and upper thoracic muscles that need it. First round helped some, but the next month I did it again and wala my pain and everything got markedly better!!! Now it’s my go to when it flares up. No more epidurals for me. I highly recommend trying it. They use a numbing agent of their choice and kenalog (steroid). I try and stay from the roids after @FunTimesand @Pebblesthecorgihad their hips done. I really avoid it. But for me the resolution of symptoms w 2 months of injections is worth it for me. I hope the pain is getting even better. Hopefully my experience helps you... Thinking of you buddy!!!

I used to have an eye twitch - don't recall whether it was the cluster side or if it started immediately following a cycle, but I know it was occurring at the same time as a bunch of other CH pharmaceutical after effects. I read about magnesium supplementation possibly being able to fix the twitch, and when I tried it, it did go away (coincidence or no?). Magnesium glycinate seems to be one of the most often favored and advised forms these days. On the down side, when the twitching subsides, people may miss the friendly gesture implying a degree of solidarity or intimacy they've grown accustomed to with you winking at them constantly.

I had horrible neck pain some years ago. Every day a misery, wearing a cervical collar all day, unable to do anything comfortably. I was in the hospital for a week just because I was going nuts from the stress. The first day I was there a doc came in and said he had looked at my MRI and he was ready to do surgery whenever I wanted (fecking ambulance chaser). Nothing they gave me, even morphine or steroids, helped at all, and when they kicked me out they gave me giant bottles of things to take daily (neurontin, oxycontin, oxyIR . . . ). I flushed them down the toilet on the third day (too bad -- street value was probably pretty high). It happened that we had a connection with a top neurosurgeon, and I counted the days until my appointment with him, thinking he surely was going to rush me into surgery and finally fix the pain. Instead, he said to come back in two months after doing physical therapy regularly. I was crushed. I wanted it over, and I was terrified of doing anything to make it worse. Turned out that waiting was the right thing to do, and I never did need that surgery (and I never miss a day of doing my neck exercises). There are those famous studies where they would look at people's spines and try to predict who was having back pain. Turned out that except in extreme cases there was no connection between spinal condition and back pain. One person could have three herniated disks and be suffering, and another person could have something that looked just the same and be having no pain. And the other way around -- no structural issues but serious pain for some and no pain for others. So maybe, like me, you were just having some kind of awful episode and it's going to get back to normal or normalish and just become a memory. Or, of course, maybe not, but it sounds like they're ready for you if surgery is what you need. Love you, Denny, and sorry you're going through this now, too.

....so glad ya found us, so glad a place like this exists...we are standing on the shoulders of giants here at CB...and i look forward to the time when we can talk about the "old days" when CH was still a thing.... and now is a usta be....

Stuff like this is so encouraging to hear - and yep I won't be surprised if both you guys will be able to prevent your next upcoming cycles entirely.

LoL. thanks I suppose... Your post made me laugh...Thank you!

....good stuff from mit....i got hung up on the Imitrex and forgot the Zomig (5 mg NS)....which became my abort of last resort. i know it works differently, at least less dramatically, because i got NONE of the severe Imi side effects noted by so many, and it lasted longer (18 hrs). with these long term HA's, even an oral might be worth a try....

best informed consent I have ever heard!

Nice! It does feel good to have tools to fight this mess. All anybody needs is a ray of hope. I'm very glad to have found CB as well. The next cycle is going to get it's arse whipped!

...was thinking to myself: ya know CHfather, you'll never know how helpful and wise the above post is to so many of us.. ....when it hit me: say it!-so i did thank you

Generally speaking moving forward with surgery is a balance between how the condition is affecting your quality of life and the potential for long term harm if intervention is delayed. Many times radiographic appearance and symptoms do not correlate. Imaging is a guide to intervention but not necessarily a mandate for surgery. If you can manage the pain, have effective relief from things like physical therapy, medication and range of motion its better to avoid surgery. If on the other hand you are just "grinning and bearing it" then having surgery is your best option. You can always do surgery but you can never take it back. No procedure is without complications which is why it should be the last thoughtful option..

As has been said a few time about the triptans, but I will say again as this is so important and I got caught up in it . Yes it can abort the attacks but it gives such bad rebound headaches and also prolongs the cycle your in . So please be mindful of this

Thanks, spiny! Noting that Batch now prefers Quercetin to Benadryl. https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582

I'm no doctor but I'd say it's CH you seem to be having shadows between attacks as a lot of us do which are not as painful but are just as debilitating. . Triptans don't work for every1 with CH . Ginger can really help with the shadows . If you have to wait for your 02 can you buy it instead to give it a go . . Can you get a second opinion on your diagnoses. . I understand you think your life is messed up but once you have a proper diagnosis. You can get the tools to fight this . Yes we all have bad days buddy I promise but we learn to live with it and we know it's not going to kill us . Plus the pain free days are so good we learn to appreciate life so much more . Hang in there my friend

Agree with all the comments above. The fact that you had such a severe bad reaction to Imitrex might support a hemicrania diagnosis, since hemicranias are generally not responsive to triptans. (They are also not generally responsive to oxygen, but you still should push as hard as you can for O2 -- as Jon' said, if necessary, get the prescription and self-pay, or go to welding O2 (we can tell you more about that)). This distinction doesn't make any real difference, but since you get periods of relief, it might be paroxysmal hemicrania rather than hemicrania continua. https://www.ninds.nih.gov/Disorders/All-Disorders/Paroxysmal-Hemicrania-Information-Page There are some parts of what you describe that aren't really consistent with typical hemicrania (length of the severe attacks), but as has been said, a fair test of Indomethacin will help you rule that diagnosis out or in (as will a test with oxygen). A test of Indomethacin usually starts at 25mg three times a day. This is a relatively low dose, but you have to see if your system will tolerate it. Can go as high as 75mg three times a day before you really know if it's going to help. Prednisone also typically helps in the short term with hemicranias, as it does with cluster headaches.