solace409 Posted May 19, 2011 Share Posted May 19, 2011 Hello fine folks, Thank you to all who gave important info and words of support when I joined last week. I'm hoping to be able to be helpful to others at some point! I started the D3/cal/fish oil regimen a week ago and have seen some improvement (although today was rough so now wondering). I think I should wait to post any details, though, as I have not been officially diagnosed. I will wait till after seeing Neuro (keeping a diary so info will not be forgotten from day one). I was told by phone that MRI/CT was normal aside from "white matter" showing I'm having chronic pain (uh, yeah, doc... remember I mentioned that when begging not to have to wait 6 months for Neuro appointment!!!!). I'm sure you'll all relate to this... I called the Neuro's office the GP was referring me to as I wanted to see if this doc had any familiarity with CH or was even a headache specialist. Person answering asked me to repeat "ch" and then said "Are you SURE they're not migraines?" not once but twice!! I will be going to a different Neuro (one from the OUCH list hopefully). I get that this condition is rare and docs don't know about it but my GP knew a little. The first thing you always read is that CHs are most painful disorder known to humankind. Just seems to me that that in itself should provoke some sense of urgency... just sayin'... My best to all... Quote Link to comment Share on other sites More sharing options...
Guest Posted May 19, 2011 Share Posted May 19, 2011 Just seems to me that that in itself should provoke some sense of urgency... just sayin'... Tear up an emergency room and see how urgent things become Most satisfying. Sounds like your off to a good start with the battle. Keep up the good work the bb Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 19, 2011 Share Posted May 19, 2011 begging not to have to wait 6 months for Neuro appointment!!!! The first thing you always read is that CHs are most painful disorder known to humankind. Just seems to me that that in itself should provoke some sense of urgency... Just when I was trying to tame my doctor bashing tendencies you go and provoke me! Insert some good ol' fashioned doctor bashin' here: I find it incredible that headache specialists (in the US at least) routinely require CH patients in crisis to wait months for an appointment. There's just no imaginable no excuse for that whatsoever (they could reserve an appointment slot each week for an emergency CH patient, or there would be many other ways to make an opening). I still think it would be good to have a very public list of these doctors where they could be called out by name, detailing the repercussions of their negligence, callousness, greed and blatant violation of the hippocratic oath in a way that would come up whenever someone looks them up online. Quote Link to comment Share on other sites More sharing options...
Guest Posted May 19, 2011 Share Posted May 19, 2011 I find it incredible that headache specialists (in the US at least) routinely require CH patients in crisis to wait months for an appointment. You bet one clusterheadache for them, and a whole lot of schedule changin would be going on. Quote Link to comment Share on other sites More sharing options...
fireface Posted May 19, 2011 Share Posted May 19, 2011 I'll jump on the Doc bash wagon. I've been to four different Neuro's. One fairly renown... and not one of them gave me a reasonable explanation as to the process that was causing the pain. I had done enough research on my own to know the basic, even some very detailed, conditions that exist causing the pain to know they were BS-ing me. I don't know if they thought I wouldn't understand or if they didn't understand. It was like they all just opened up their med book...looked up CH and prescribed the first preventative and abort drug on the list. I went to ER one night a few weeks ago because I had k10's coming one right after the other...One nurse came in and said "oh, you're having Migraines" and I said "no, Cluster Headache"..and she said.."well what's the difference?" rather smugly..so I started rattling off the differences...she turn and walked out and never came back..Like I insulted her or something. I really believe they just don't know what it is. By the way..I had 4 k10's... each lasting about 40 mins during an 8 hour period in ER and they never even came in the room for 3 of them...even tho I buzzed them right away..until after they were gone. They just gave me Dilaudid every 2 hours and that didn't even touch the pain...after the 4th one I said unhook all this crap...I'm out of here...They were PO'ed that I left and made me sign a statement that I refused treatment. I thought that was the perfect opportunity for them and me to try different aborts in real time and document start/stop times..pain levels all that...They didn't document anything. I was really disappointed. Sorry to be so long winded, but the medical field in general just doesn't seem to get it. Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 19, 2011 Share Posted May 19, 2011 Solace, thanks for the update. I had been wondering what had become of you. I'm glad you had some improvement, and sorry that it has not been complete. You had mentioned that your husband was going to set up your oxygen system. Has that been accomplished? It can make a big difference. Yes, it seems shocking that a person can be trained as a neurologist, practice as a neurologist, and not even know what a cluster headache is. My daughter was misdiagnosed for many years, first by our GP as having a gluten allergy, and then by two neuros as having trigeminal neuralgia. Since so many neuros don't even recognize CH (and yet it's very likely that they have had at least one CH patient), it suggests to me that there are a whole lot of people out there who think they are suffering from "migraines," "tension headaches," sinus headaches," "trigeminal neuralgia," or some other condition, who in fact have CH. Quote Link to comment Share on other sites More sharing options...
Guest Posted May 20, 2011 Share Posted May 20, 2011 Right on Fireface.!!!!!! Lets not forget the good doctors now. I just know there's some around. the bb Quote Link to comment Share on other sites More sharing options...
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