Hi.  My wife just found this forum while doing searches on Nerve Blocks for me (I'm having one this coming Wednesday, and I'm a little nervous), and she thought I should join so I could talk to people who'd understand a lot more then she feels she can.

Technically, I think my diagnosis is atypical migraines with complex and cluster features - do I count?  I've had migraines since 1st grade (I remember the ER doc bewilderedly telling my mother that he had never heard of children so young having migraines).  Headaches run in the family on both sides.  My Mom and my departed Great Aunt on my Mom's side both suffer (Great Aunt had no pain though, just light sensitivity, nausea, and auras), and my Dad recently started having Cluster Headaches.

I have this vivid memory of my GP looking at me and telling me that there are no such things as atypical migraines, but mine are weird, so he was going to call them atypical migraines.  (He's a funny guy, my GP.)  Since then, I've developed the cluster features, and the lovely "probably a related complex symptom" experience of pseudo seizures.  I'm on my third neurologist (the first one was an absolute idiot who couldn't look past the fact that I also had psych issues.  The second was useless and never wanted to tweak my meds despite lack of improvement), but am about to move to a fifth since she's leaving her practice soon.  I've been assured I'll like the new Lady though - and she was the Neuro Consult one of the times I was up at the University Hospital ER, so I vaguely remember thinking she was nice.

I'm also bipolar, so navigating changes or additions to my meds are a minefield, since so many headache preventatives are also psych meds (usually stabilizers) and I've run afoul of that once already, when they tried to switch one of my preventatives to Depakote.

Sometimes I go a few weeks with daily headaches that don't get much above a 6 on the 10-scale.  Sometimes I'll spend three consecutive days (or more) going to the ER, praying they'll find something that will at least cut the edge enough that I can get some sleep.  I have nothing but sympathy for people with true cluster headaches, because I've seen my dad go for more than a week and a half with the same major headache.  He asked how I do it; I wondered how he does.

I don't get any auras, which sucks.  Sometimes a headache will slam into me out of nowhere, starting at an 8 or a 9.  I'm mildly light-sensitive all the time.  Hardly a day goes by I don't at least have a headache that hits a 4 or so.  (I didn't realize that until the new Neuro had me start keeping a detailed headache diary.)  And after the really bad ones, I'll get these odd "echo" headaches, as though the full headache is still there, but I can't feel the pain - as though the pain is on a different frequency or something.

I have to drive almost an hour to get to the ER now.  My local ER had pretty much decided I was just a drug seeker (despite the fact that when they used to try to give it to me, I always tried to talk them OUT of giving me Morphine.  Stuff gives me nasty rebound headaches half the time, plus I hate the idea of narcotics as often as I have headaches that bad; and anyway, from what I understand, they're not really good for headaches in the first place), and not only is the level of care at the University Hospital better, that's where my new Neuro is out of, and I like her to be able to access on the record what they did, and when I was in - just in case I forget something when I tell her about it.

What else is there to say?  I have two cats and a dog.  (Who, if we can get the money together, we really want to arrange training as a service/therapy dog for me.)  My wife is the most awesome woman in the world.  I write, when I'm feeling well enough.  I'm on SSDI for the headaches, the bipolar, and a few other issues.

Headaches really, really, really suck.

I hope you think I'm worthy to join your internet tribe here. 

Of course you're worthy to join this ragtag bunch of misfits!! Of course it's a club NO ONE wants to belong to, you sum it up quite well...headache suck!

However, Bob makes an excellent point. We'll hear you out, support you where we can, be a shoulder to bitch and cry on when you're hurting, but as far as medical advice, yours is a case where any information you find here should be shared with your doctor to prevent any nasty interactions with your current regimen.

Wishing you peace and some pain free time soon.

Joe

Another welcome and yes, you do count, don't worry about that.

With a complex medical background it sure must be fun for each doctor trying to work out what they can and can't give you, so having your GP keep an overall perspective is a great idea, especially for possible drug interactions. A good pharmacist will also be able to help with this too as their specialist knowledge is in this area, plus they normally enjoy getting involved in cases where they get to use their skills rather than just dishing out the standard prescriptions they do all day every day.

Have you discussed using oxygen to abort the CHs with your doctors? It is unlikely to impact the other medication but do check with them on this.