36 year old active male who, after being prescribed some ADHD medication to try for the first time, started to devlope one sided headaches. These quickly became raging( MRI and MRA and blood tests all negative). Triptans, oral and subcutaneous, did nothing. Currently on verapamil, topomax and predizone but the only relief was 02. Some attacks were so bad my wife had to sit on me to stop me from shacking.

I have so many questions, but I will start with these 2:
1- I think the worst of this cycle is over ( I have not had a full blown attack in 3 days) but I still have constant pressure/discomfort feeling with occasional stabbing on the cluster side that seems to be there 24/7-- is this common? Will this ever go away? Should I take anything for it or will that just cause rebound headaches.

2. Has anyone ahd any luck with the nerve stimulator? I am getting a free trial for 2 months starting monday.

Peter- Thanks so much. Just getting some confirmation on the shadows gives me piece of mind. This whole thing has really thrown me for a loop.

I will look into the d3 regiment but I was already on a 15k d3 with fish oil prior to onset.

So how do I know if its the verapmil and topomax that are helping or if its simply a cycle winding down? Also, when will I know if its chronic vs eposidic? If Chronic, wil. I ahve to stay on these meds for ever?

Finally, I have read a few palces that high intensity cardio is a trigger and a no no for topomax users. I am an avid road cyclist (although I have been off the bike for 6 weeks now due to this son of a b). If I cant ride I dont know what I am going to do- I work a high stress job and its my only releif valve. This whole thing is really swtarting to depress me.   

Mc, A couple of my past experiences, during my first few years of dealing with these monsters I tried running with great success. I couldn't figure out why they hit an hour after going to sleep (still can't) so I figured it had something to do with my metabolism slowing down for the day so the first time I ran just before calling it a night and went the whole night PF, next night no such luck but when it hit I went out and ran anyway, eyes almost shut from the pain, halfway around the block that sucker drained out of me. In time I learned the key was to get totally winded, literally gasping for air...vigorous exercise does nothing for me unless I can get winded. Hyperventilating doesn't do it either...I've tried. When I learned about oxygen it made sense, been my go to abort ever since but even o2 doesn't work every time. I've heard though that exercise can be a trigger for some people so go figure?

Thanks Sean- Its a little unnerving not knowing when this crap will end (or when it will flame up again). I have not had a major attack for some 4 days- but the shadows remain every waking hour. Interestingly, I never got an attack while sleeping. Im thinking the verapmil and topmax are starting to work. I have been on a high d3/fish oil regime for years but just added in the cofactors so we will see if that makes any difference.

Hey Mc and all,

Welcome to the cluster club, brother.

Long time since I’ve been on this site (15+ years?). Back around 9/11? Wow. Lots of water has passed under the bridge and these boots have covered many a mile. HOOAGH...

if new DX it is probably to soon to tell if it’s chronic.

I remember I started episodic when I was 18 I think. And it would go away, sometimes for years. Been chronic for well over a decade? Now 49? Can’t remember, seems like i went chronic in OIF, or was it OEF, playing in the sandbox. OIF, yeah.

Anyway, the shadows. I’ve never been able to predict a cycle. Soon, You could go off cycle for years and just forget about it till next time. Chances are very good for that. Heck yeah.

Over the years, I’ve tried all sorts of meds. Pain meds, while they might help some of your other pains, do not seem to help CHs at all. I recommend don’t even try that route.

Sometimes I would have pretty good results at first with prescribed CH med then... it’s like the CHs FIND a way around the preventative type stuff. It’s like you just can’t kill it. Its like that sucker finds a new way and when it gets through, well, it’s just extremely pissed.

My latest is to take about 4 1 mg Cyproheptadine (children’s antihistamine - neuro prescribed 1aday for CH. BTW, my wife was also prescribed this for her migraines. Same neuro.) two or three times a day if I remember. Also immatrex injections and tabs.

Immatrex injection is gold. Save them for when you must be in public or driving or something.

  CH is described as intense pain lasting seconds. Is this true for others? Without an abortive, mine can last for as little as 30 minutes to many hours. The intensity of the pain fluctuates over seconds in waves if you will that last for many hours, ramping up and down. Usually four or five bad ones for hours in a daily cycle. Need sleep. But... if I go to sleep. It’ll wake me up.

Trying to abort these days by chewing up half or one immatrex 100 mg tab. Of course, not really working. Only abortive that’s really worked for me is the immatrex injectors though they feel a bit traumatic and others kind of freak out when you suddenly pull out the ol hypo and pop yourself in the thigh and go to turning pale and red and sweating or whatever. Course they’d freak out more if they could witness a CH in fine form. Imagine if they could just feel it for a single moment...

BTW, finding out there were other people out there suffering similarly and who actually UNDERSTOOD my nightmare was a mixed blessing. On the one hand, THANK GOD, it’s not just me! THEY ACTUALLY UNDERSTAND!! Pivotal stuff. On the other hand, OMG, no one should ever have to suffer this.

Supposed to have O2, would like to try it, but I can’t ever seem to actually GET a doggone tank and the right mask, even with the pescription in my hand. Try 02. Heard good things about it.

Anyway, can’t remember (TBI). sorry. Mmmm. Ah yes, well what I take is not really working for me. Been going richter lately. I am in the shadows most all the time. Horners, head kneck and face pain, but like at maybe 50 to 80% not as bad as the full tilt boogie. So, it’s like cycling to some degree all the time with frequent bouts of super cycles mixed in for extra credit and fun.

I sometimes take BC powders as they can be somewhat helpful (probably the caffeine). I don’t recommend taking a lot of ANY kind of over the counter pain meds at once or even spread out over time, not good for you at all.

A human being can Take an amazing amount of punishment. You can get through it. I can get through it. We all can get through it. Each time. Will you be the same afterwards? Probably not. It’s life altering.

It ain’t gonna be easy But, someday, you’ll be smiling again! Just got to get there from here is all

Sorry I don’t have better advice. I just go in the bathroom to get away from everyone and sit there and rock it out best I can. Just got out of there after about 3 hours. Been getting hit really really bad hard lately. Very little sleep.

Wracked. Drained. Beat up and very very Tired. But, hey, I’m still here. So I won this one. I can probably win the next one. I don’t like to quit. Don’t quit.

Nerve Stimulator? D3? Got to research again.

Talk to others (CHers) to help you understand. Even in the middle of the night. That’ll help more than you will know.

Maybe they won’t be as long winded. LOL

Hang in there, brother.

Arrr! Oh no. Gotta go. The doggone bell just rang for me. Rematch. Sigh...

God bless all and to all a good night!

Thanks all.My clusters have seemingly gone away. But this right sided headache (3-4 out of 10) that starts the very second I wake up and lasts without remission all day long- and has been there now for 2 months- is driving me mad. I am at my wits end. its like a deep soreness in my head as well- if I sneeze or cough or move my head fast I feel it. What the hell is this!!! Dr. increased the topomax, I have the 02- but dont need it now that the bad attacks stopped. I am on the full out D3 regime for 4 days now. Taking melatonin as well. Acupuncture, essential oils, etc. Saw neuro this week- he is at a loss- he took blood work to check testosterone levels and pituitary gland check.

Yes on the MRI (and MRA). No on the serum level- I asked, but he did not think it was important.

Mc, On a side note...curious about the dosage on the sumatriptan...25mg doesn't do a thing for me but 50mg will buy me 6 or 7 hours of sleep. When my wife gets hit with a bad migraine it takes a 100mg to knock it back.    Sean

[quote author=79545E59545E59380 link=1526129525/15#15 date=1526674168]Mc,  As an episodic sufferer and I'm a pretty text book cluster head, I have had bad all day headaches (at a 4 or 5 level) in the same location of my clusters that went 1 or 2 days but never for longer but we're all slightly different on how they present. So I have a few questions for you.
1. How many weeks did the hard hits last?
2. Did the all days headaches start from the beginning?
3. Are you still on ADHD meds?
4. Have you been definitively been diagnosed with clusters?
5. Are those all day headaches in the exact same location of the really bad hits?
   
   A few thoughts....maybe they're not clusters or if the nasty hits only went for a few weeks perhaps you're still in cycle and just presenting different from the textbook definition of a cluster. If they really are clusters, even shadows usually respond to oxygen so don't give up on the O2. I'm assuming you guit the ADHD med but if not what are the side affects of that particular med?  Migraines usually respond to triptans but you stated earlier they didn't help.
It's very possible you've got something else going on...sure hope you figure it out soon!
   Sean[/quote

Sean- I had the bad hits for about 3 weeks. They started to decrease when I went on verapamil and topomax. They were precedded by 2 weeks of constant headaches and the same now- all on teh right side- they never let up. I ahve not had a headbanger for over a week and have no problem sleeping, but as soon as I wake up and untill i gto to bed I have a headache. At first, they thought its has hc, but the idomethocin did nothing. Then, when the headaches started to spike with 1 hour spikes, they figured it was clusters.

The headaches did not start out 24/7. They started only late afternoon- almost like a caffene headache. They slosly graduated to all day over the course of 2 weeks.  They have been all day now since early april. Its painfull enough to be distracting, but not enough to keep me from work. If I cough or sneez I can feel it- like a bruise almost.