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   Author  Topic: My "official" diagnosis/treatment UPDATED  (Read 1452 times)
Demeter
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My "official" diagnosis/treatment UPDATED
« on: Dec 1st, 2005, 11:06pm »
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I introduced myself a couple of weeks ago and thought I would update everyone since my dr's appt was today..
 
Well, saw my new neuro today, I told her the symptoms and she instantly said "cluster" which at least gave me confidence that she picked up on what the other doctors did not.  I did tell her that I had been reading this forum and have been reading up on CH and she was very happy with that.
 
She shyed away from oxygen, says its too much of a hassle Sad but if the medication that she prescribed does not work, she will be getting a call.  I did start taking 6mg of melatonin about a week ago, not doing much for me except helping me fall asleep faster after the nightly headaches.  
 
She has me on 80mg of verapamil, one tablet at bedtime, and 25mg of Indocin, label says to take 1 tablet 3X's a day as needed for headache, however she told me to take it only when I get a severe headache, and to not take more then 3X's a day.  I dont think I am really happy with the regiment she has me on, now that I am home and have looked it up.  Not to mention gotta take the Indocin on a full stomach, yeah, like during a severe CH, there's nothing that I want more then to go eat something???
 
Anyone got any suggestions??
« Last Edit: Dec 15th, 2005, 6:29am by Demeter » IP Logged
chewy
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Re: My "official" diagnosis/treatment
« Reply #1 on: Dec 1st, 2005, 11:33pm »
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Suggestions? Sure.
 
Using 80 mg of verapamil will have bout as much effect as a tic tac. Up it to at least 240.
 
Oxygen a hassle? For you or for her ?
 
Sounds to me like shes treating for migraine not cluster.
 
I dont think she has a clue. Find a new neuro.
« Last Edit: Dec 1st, 2005, 11:34pm by chewy » IP Logged
E-Double
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Re: My "official" diagnosis/treatment
« Reply #2 on: Dec 1st, 2005, 11:35pm »
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yeah........She's just barely touching upoin what she needs to provide for you. Atleast it is not too far off.
 
Read on.......
 
Indocin is not going to touch it!!!!! It is also used as a preventative for other headache types and if you use it for too long will cause rebound HA..very painful!
I was on it for over 1 yr. for a different headache type. It keept the idiopathic stabbing headache away but not Clusters and that was at upwards of 200mg.......when I had to come off it was debilitating.
 
Verapamil will most likely need to be increased 4 or 5 fold.
 
What about an abortive?
Imitrex Injections, Zomig Nasal Spray or ZMT???
Give Zyprexa a try.
 
Oxygen!!!!!!!!!!.....A hassle. Disgraceful! It's a sin for her to say that! Angry
Call her back now because her treatment plan will not bring you anymore relief to be honest.
 
Print this out and make her follow suit!!!!!!!
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
It will present the appropriate treatments that you should seek and your doctor should know!!!  
 
Hugs to you my friend and plug away. Fight with knowledge and do not suffer when there are treatments within reach!
 
Eric
 
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Re: My "official" diagnosis/treatment
« Reply #3 on: Dec 1st, 2005, 11:38pm »
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on Dec 1st, 2005, 11:06pm, Demeter wrote:
Anyone got any suggestions??

Yeah. Get the fucking oxygen.
Your doc might have "tagged" CH correctly; mine did, right off the bat.......but there's a BIG difference between diagnosis and treatment. If you got CH per the doc, then your meds are Totally Inadequate. Oxygen first, snortable triptans second, and double/triple/quadruple the verap intake third.
 
That's all I got.
RJ
« Last Edit: Dec 2nd, 2005, 6:52am by Mr. Happy » IP Logged

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Re: My "official" diagnosis/treatment
« Reply #4 on: Dec 1st, 2005, 11:53pm »
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on Dec 1st, 2005, 11:38pm, Mr. Happy wrote:

Your doc might have "tagged" CH correctly; mine did, right off the bat.......but there's a BIG difference between diagnosis and treatment.

 
True, happened to me and went through years of wrong directions, including indo up to 200mg a day and all, she might be trying to exclude the icepick headaches for now, which are a different headache.  Call the doc if it "ain't working" and see what her next move is and decide from there.  Writing a script for oxygen is no hassle.  
Depending on where in the cycle I am, I vary the verap from 360 to 600mg, for now, but I also have an abortive, or two.
 
Agree with what Eric (E-double) said.
« Last Edit: Dec 1st, 2005, 11:59pm by Kevin_M » IP Logged
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Re: My "official" diagnosis/treatment
« Reply #5 on: Dec 1st, 2005, 11:58pm »
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Chances are.....us sufferers know more about CH than some doctors do.
 
When I was diagnosed....actually I self diagnosed..and later went to the doc....I had information from this board, and information from an individual on this board, that I relayed to my doc.   The individual on this board told me what I needed, and my doc did exactly as I requested.    
 
This doesn't work with every doc.....but it never hurts to try.
 
Good luck to 'ya.....let us know if the meds work.
 
Jean
 
 
 
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Demeter
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Re: My "official" diagnosis/treatment
« Reply #6 on: Dec 2nd, 2005, 1:19am »
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Damn, not exactly the responses I was hoping to hear, though expecting it, but ah well, same ole shit, different day.  
 
I'll call her tomorrow and try to at least get some O2, I have another appt with her in 3 weeks, and I just cant take another 3 weeks after waiting 2 1/2 just to see her today.  GRRRRR
 
Thanks everyone for such a quick response, truly appreciated.
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Re: My "official" diagnosis/treatment
« Reply #7 on: Dec 2nd, 2005, 4:14am »
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Demeter  
 
Read up on CH as much as possible, get print outs of all the information for the doctor then tell them what you need them to do.
 
Repeat as necessary.
 
I know it should be the other way round, and you ought to expect things to be that way, but life's too short.
 
O2 works good for most people, where's the hassle in effective pain relief without crappy prescription drugs ?
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E-Double
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Re: My "official" diagnosis/treatment
« Reply #8 on: Dec 2nd, 2005, 5:30am »
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Just don't want you suffering needlessly for as long as many of us have!
 
Be well!!!
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Re: My "official" diagnosis/treatment
« Reply #9 on: Dec 2nd, 2005, 5:35am »
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Just noticed where you live.
You're not too far frm Philly.
Why not try to get over to Jefferson Headache Center.
 
http://www.jefferson.edu/headache/fac/index.cfm
 
Stay Strong!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
Demeter
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Re: My "official" diagnosis/treatment
« Reply #10 on: Dec 2nd, 2005, 6:23pm »
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Great find on that Headache center!!  I only moved here a couple of years ago, so I really dont know much about my area, Im calling them monday to set something up, they gotta know more about this then my current neuro!!
 
Unfortunately I have had CH for around 13 years without a correct diagnosis, needlessly enough for my liking Smiley
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Re: My "official" diagnosis/treatment
« Reply #11 on: Dec 2nd, 2005, 6:46pm »
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I went 10 yrs without a proper diagnosis.
T's quite common.
 
Now go find a break Wink
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
Demeter
New Board Newbie
USA 
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I love YaBB 1G - SP1!

   


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Re: My "official" diagnosis/treatment UP
« Reply #12 on: Dec 21st, 2005, 7:18am »
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Just wanted to give everyone an update....firstly, my scrips did nothing, stopped taking them after about 1 1/2 weeks.  I am however at the end of my cycle, hopefully.  I left a message with Jefferson, so hopefully they will call me back, still want to go so that I have a head start next time.
 
I will still be hanging around, hopefully PF...   Cheesy
 
Thanks everyone!!!
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