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First of all, the "pain in my head constantly" may be what we refer to as a "shadow." Clusters are referred to as the Beast. Makes sense, huh? As to your other point, I have to remind myself at bedtime that if I wake up and wonder am I having a cluster attack, I am, and I should get right on the oxygen. The abort is easier. There are some documents on this website under patient resources about how to make the most of your oxygen experience (doesn't that sound romantic!). Also, Four cycles in nine years is, as you point out, lucky. I used to be episodic, one episode a year for 6-12 weeks with headaches only every other night (sleep and alcohol are my triggers). Slowly over 41 years my cluster disease has progressed, and now I'm chronic with 3+ attacks every night year round. Lots of resources here, glad you found us. We are, I think for the most part, people for whom the medical world has not really made a place (although thanks to Clusterbusters and others that's getting better), and we are each our own guinea pig, experimenting to find remedies and prevention that work. All the best!

Well @Shaun brearleyif we're gonna start talkin PF this one's got to be in the queue!! One of my favorite cuts when I'm taking my "alt meds"!

My prayers and thoughts are with you! I pray you find a good surgeon and are alleviated of this problem all together. My heart goes out to you @Dallas Denny

Hey Denny!! Tell the anesthesiologist NO Epinephrine in the meds that they give you!! Really serious here my friend! That can save your bacon in the head department. One surgery with epi caused ten hits. One colonoscopy with epi ended up with me getting a general to stop the pain writhing I was doing. Yep, woke with a hit too and the nurse had my O2 and mask in hand the instant I sat up. TELL THEM!!! My records reflect the epi bit now. Everywhere!!! And they also state that I will have O2 at 15lpm and a non-rebreather with it and do not try to make me lie down. Tell the doctor too. Hells bells, tell them all!!! My family have had many fusions - from neck (My Dad) to thorasic (My youngest) to lumbar ( eldest and me) and we have all done very well post surgery. You are getting all my good juju, prayers, vibs to go with as well.

Keep it together big man . You can face anything . You got this belive me . All my thought and prayers go out to you. I would say good luck but you don't need it as I belive you will get though this

Hi Tamari...welcome... ...your best bet is to hit the oxygen at the first sign of a hit. i understand a desire to conserve O2...but in the end it aint worth it! ...some have found an energy drink/caffeine immediately before the O2 makes it more effective...for me sometimes it was all i needed.. ....staying on the oxygen for 5+ mins after a hit abort may help with the shadows. others find that ginger, caffeine, or regular pain relievers like aleve help with shadows (i'm sure you know these meds no help with an regular hit)....for me, nothing ever worked on shadows, i had to learn to just deal with it ....you should experiment with various types of O2 breathing, hyperventilation/slow breathe/breathe and hold...or a combo... all work for different folks. there is no right way.... best jonathan

I once had a side effect to tramadol -- my heart rate dropped into the 30s -- and at some later point, a doctor blew this off as impossible. But I looked it up and bradycardia was listed as a "rare side effect." Your reaction is your reaction, and it's a message saying that it's probably a good idea to explore other options, such as the Vitamin D anti-inflammatory regimen (which by the way gave me, a chronic, five and a half years of total peace). There's also a new drug, Emgality. Even without the bad reaction, triptans are not great for our bodies. I noticed that I had more and more palpitations and gave them up for that reason. Whoever prescribes your sumatriptan needs to know about your reaction.

Welcome to the community @Kprice, sorry you needed to join us! I've been around these online cluster support communities for 15+ years and I can't recall ever seeing the symptoms you've described! There has been evidence of triptans causing rebound headaches and many folks subscribe to the school of thought that the can extend cycles. Since you're new here I would urge you to look into the vitamin D3 anti inflammatory regimen in our clusterbusters files section! It works very well for many folks and should lessen the number and severity of individual hits at the very least! Dallas Denny

@Shaun brearley, in 1991 I bought some studio time at a small, qtr mill hobby studio owned and operated by Buford Jones who was on a tour break as the sound engineer for PF......the dude had gold records as sound engineer on records with Bowie and had toured with him as SE as well!

Rest in peace man you we're 1 true great !!!

And we have to have Floyd on here !!!!

Ah, that sucks Denny, I'm sorry. I was basically going to say the same. Although I do not like doctors I have a high respect for surgeons and they sure are doing great stuff lately. Sending good vibes.

I detect a theme here with the reports of consistently successful surgeries of this type. Now a prediction: You'll be dancing a jig out of that OR following your entirely successful version of the procedure, and will be experiencing major, sustained relief, after all these years and this more recent major crisis. The procedure will also be 100% epinephrine free, or everyone involved is going to have @spiny to answer to!

LOL Jon this post made me chuckle I have loved this group since the 8th grade as did my Dad.

Hi K...welcome... ...agreeing with Denny....these dramatic symptoms are highly unusual. LOTSA folks have unpleasant/alarming reactions to the hammer that is suma (esp the dang 6mg stat)... but that is typically much more transitory. talk to your pharmacist...make sure they have time to listen/digest even if that means an appointment. those behind the counter are frequently overwhelmed. i'd try to find one connected with a health org or a large corporation....those have specialized pharms in supervisory positions they can refer you to..... or consult themselves. good luck...keep poking around....this sounds concerning and well worth pursuing... best jonathan

Got to be 1 of their best !!!!

It's ok buddy got it know

No, it's one of my fav Willie Nelson tunes....that's really weird cuz I just tried it and it's playing for me!! What the hell?!?!

I'd have to be crazy...To stop all.my singin And never play music again....

Wow, nice amount of posts. I am behind on going through all the cool stuff! TY! Here is my latest...

Thank you all, I reached my destination today. South East FL... it was a rough trip on me and my pup but we made it...

....bwaaa...CCR stuck in "Lodi" again always been one of my favorite Credence songs. for many years i never knew what the heck he was saying..." stuck in low-drive, lo SOMETHING"...and what's an "a-gin?". visiting my brother in CA one summer, we actually drove thru Lodi, and he asked me..."you see what he was talking about?". i said who? he looked at me like the younger brother moron i am and said "FOGERTY!" ....THAT'S when i got it..."oh yeah, i get it now".....

Do any of you have Spotify? I often listen to spotify playlists that I created or that I follow when getting hit. Usually something either relaxing, dance or chill tracks. Maybe we can create a list and share it there with everyone's suggestions? If you are into the relaxation stuff, here is a youtube playlist that is supposed to be the most relaxing songs. The first one by Marconi Union "Weightless" was supposed to be scientifically proven as the most relaxing song ever ... lol!

....dang it DD...sorry to hear this...prayers, vibes, good thoughts on the way. freakin scary now but look on down the road and be grateful it was found now and you avoided the coulda-shoulda-wouldas. been 11 yrs here for same damn thing...the scare goes away when you realize you're ok....and you will be! best jonathan

Well ya'll, I'd appreciate your prayers, positive thoughts, healing juju...whatever ya got, please send it my way! A little over 2 weeks ago I began experiencing severe pain in my neck and left shoulder....I was diagnosed with degenerative disc disease in 2013 after an MRI showed 2 herniated cervical disc's and 3 herniated lumbar disc's so I initially thought it was just a flare up of the normal daily pain I've been having all these years....however, within a couple days the pain was unbearable, and after my wife found her tough, old Marine in a scalding hot shower crying like a baby, she made me let her haul me to the ER. After copious amounts of IV pain meds and muscle relaxers the ER doc sent me for a catscan...when I got back he told me the catscan revealed deterioration of C5 and C7 to the point that the resulting stenosis was putting direct pressure on my spinal cord and that he was going to refer me to a spine surgeon. Went to see him last week and after examining me he said that from looking at my 2013 MRI and the ER catscan that he thought that I was teetering on the edge of total paralysis!! Damn, it felt like all the air had been sucked outta the room!! When we got to the car I told my wife I needed to just sit there for a bit cuz my heart was about to beat out of my chest!! So, a new MRI is scheduled for next Tuesday to prepare for neck surgery and not gonna lie, I am freakin terrified!! DD