well I had the long awaited apptmnt with the specialist that i found thanks to OUCH.
wow finally a doctor i didn't have to teach. this guy really knew his stuff and didn't treat at arms length. he actually validated what i already knew.
he has diagnosed me with chronic ch.
gave me preventative med verapamil 120mg three times a day to start (said he will have to raise it most likely).
nasal spray zomig 5mg
multidose imetrex vials for injections
o2 15lpm with non-reabreather
but said prednisone has too many side effects so would hold for now
i can't have DHE because of severe allergy to ergot.
he said the energy are ok but just take it easy.
he said it was a classic case of chronic ch.

I also saw my new GP who has a family member with ch. (another dr with some knowledge) anyway he wants me to have some kind a nerve in the occiptital area. anyone have experiance with that, if so i would really like to hear from you?

anyway for the first time in six years now and after countless doctor's, er trips, narcotics, mri's etc etc. i finally feel like i have some doc's that got my back. :D

Quote:

verapamil 120mg three times a day to start (said he will have to raise it most likely).

Oh, Yes...most likely Karl.   ;)

This is great news and I am so very happy for you.

Excellent news, Karl.  Glad to hear you've finally gotten in touch with someone who's working with you to get this under control.   :)

You've got my phone number if you ever need anything, and you know I mean it, buddy.  

All the best,

George

Just remember to not take the zomig and imitrix within 24 hours of eachother.  It can make a nasty heart attack.

Just remember to not take the zomig and imitrix within 24 hours of eachother.  It can make a nasty heart attack.

yes the doc and the pharmacist both made that clear to not tkae both.
 the doctor wanted me to try the nasal spray zomig as he has had some success with on his other patients. primarily though the imitrex is what he gave cause of known success with me. the multidose vials will make it so i can take 4 3mg shots in a 24 hr period instead on only two 6 mg, if i need stronger than 3mg i can always reort back to the 6mg.

well thats all for now, i have been getting hit around 5 times a day snd i start work again today. (cause i had taken time off) but at least i am armed a bit.

Hey Karl!  Great news!!! I'm glad you have a good team behind you.

... I have a few points to raise on the Verapamil front ...

Unfortunately 20% of those on Verapamil end up developing heart arrhythmias.  They go away once you stop the Verapamil but need to be detected ASAP.

Make sure you get a baseline EKG before you start the Verapamil if you haven't already had one and then get a new one every time you reach a new therapeutic level.  You need to follow up with another one every six months you're on it.

Titrate up slowly.  If you start out on 360mg the first day you're likely to get pretty dizzy pretty quick.  Add the pills one at a time and wait a few days in between till you know how your body will react.  

Beware of constipation!  This stuff can bind you up good.  Get yourself some Miralax.  It's not a classic laxative and is easy on the system.  It draws moisture into the stool instead of messing with bowel muscles.

Be very careful mixing Verapamil with energy drinks.  Both are calcium channel blockers.  Block too many calcium channels and you get heart rhythm issues.  I did that one night and it wasn't fun.

Typically if I keep it to one can a day I'm ok.  Two put me over the edge.

Good luck...

-Dennis-

thanks dennis for the info on verapamil, some of these things i was advised on and some not. I will take this info in and use it.

i am still looking at the occipital nerve block but i don't know effective it will be versus risk and cost?

right now i am geting pooped4-6 times a day and i am very tired and frustrated but happy i found some dr's

it is an answer to alot of prayer for me.

GP who has a family member with ch. (another dr with some knowledge) anyway he wants me to have some kind a nerve in the occiptital area.

 I dont know if your doctor is talking about surgery or injections to block the nerve,  I was getting injections in my head and neck it didnt seem to help,  but everyone is different,  and from what I have heard dont have the surgery or atleast try the injections first if you think you want to try it.  Good luck.  Phil

wrote on Sep 11^th, 2008 at 12:38pm:

i am still looking at the occipital nerve block but i don't know effective it will be versus risk and cost?

Is this after you see if Verapamil will work?  I hope so.  You would be smart to give Verapamil a good month before giving up on it and going another route.  This stuff can take a couple of weeks to become effective and the side effects should settle out after a month.  I hate seeing folks give up on something too soon.  Sorry if I'm reading too much into what you wrote.


Quote:

right now i am geting pooped4-6 times a day and i am very tired and frustrated but happy i found some dr's it is an answer to alot of prayer for me.

OUCH! I hear you brother and hope you can catch a break soon.  Hang tough and remember to live between the hits...

-Dennis-

Glad you're getting great advice, Karl. I really feel for you and all the other chronics.... just going through episodic cycles can seem like the end of the world, I can't possibly imagine how you cope. Hang in there, buddy!

David

Balanchine wrote on Sep 11^th, 2008 at 7:28pm:

I really feel for you and all the other chronics....  I can't possibly imagine how you cope.

If your lucky and end up here you learn pain management, its the key to being chronic and living a mostly normal life.

Hang in there, Karl......the beast got me daily for 31 years and I finally beat his ass!  [smiley=bigguns.gif] (Not to death, but im winning ;) )

thanks you everyone, it is so great to hear from you all. I am just stubborn enough that i won't give in. i am just adapting and improvising so that i will overcome.  i am very tired now and my nerves are frazzled and am so fed up but i have found that with ch.com, educating myself and now 2 great doctor's. i have a chance now to learn to dance with this beast. apparently i dont have a choise :P

Good news Karl, Dont give up on the drug therapy yet. I would do all I can first before jumping to ONB. Get that 02 going. You can have a tank at work you know.
all the best
thebb
PS...You got my number as well.