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        New Message Board Archives >> Jul-Sep 2003 >> Can anyone help me??
        
(Message started by: Seth on Sep 11^th, 2003, 9:30pm)

Title: Can anyone help me??
Post by Seth on Sep 11^th, 2003, 9:30pm

??? I have been with these things now for 15 years.... I have found out that.... there is a procedure that the doctors can do to make them go away, but it leaves that side of the face num. Does anyone else know of this procedure and what doctor will do it... The one I see now, wants to go through all the drugs and etc.. before.. but I have tried so many that I am getting tired of them all and them not working....

Thanks...

Seth.

P.S. It hurts!

Title: Re: Can anyone help me??
Post by Lori on Sep 11^th, 2003, 9:41pm

Hang in there..you will get responses to your post about the procedure. I personally have not heard anything good about it from past posts. I know someone can tell you exactly what the procedure is called and then you can go to search and find what has been posted about it. I'm sorry you are hurting. Go to the OUCH button on the left here...then click on CLUSTER HELP, then on MEDICATIONS. Read and print..maybe there will be something there new for you. Also, try clicking on the oxygen button on the left too. That seems to work well for many too.

Let us know how you are.

Title: Re: Can anyone help me??
Post by judyw on Sep 11^th, 2003, 10:58pm

Welcome Seth, I am sorry you need to be here, but you will find more information here than anywhere I know...Please check out the links to the left and read all you can...The Search button will give you many answers to your questions...The procedure is probably the RK procedure...cutting the nerve and leaves face numb...only problem with it, other than drooling, I hear, is that you can still get hit on the other side in the future...Please keep in touch with what you are taking and how you are doing...You are not alone....

Title: Re: Can anyone help me??
Post by cootie on Sep 11^th, 2003, 11:18pm

Hi Seth.....hang around......soon sumone will get on here that knows about the procedure and give ya sum info. Welcome and read up cuz there's alota learnin on here ! Pam that is learnin every day

Title: Re: Can anyone help me??
Post by UnsolvedEquation on Sep 11^th, 2003, 11:21pm

Seth ... What would you like to know ? I've had several of the procedures.
Sphenopaletine Nerve Block (2)
Occipital Nerve Block (4)
Facet Nerve Block (1)
And I have RF (Radio Frequency) scheduled for the 23rd at MHNI.
IM me
UnsolvedEquation
PS. Most docs won't even consider the RF treatment until all other measures have been tried. And you really want the 'best' to do this procedure. The nerves that affect your face and could possibly cause facial paralysis (and/or loss of speech) are very close to the nerves that the docs intent to destroy. You want a doc that has done this SEVERAL times or you don't want it at all.

Title: Re: Can anyone help me??
Post by 5-string on Sep 11^th, 2003, 11:24pm

Seth,
Welcome. I can't give you any advice on the surgery, someone else will have to.
If you've never looked around here, give yourself a tour. Take the "cluster quiz" ask questions.
Nobody knows how painful and frustrating these things are more then the people who suffer from them.
Sorry you're head hurts. Good luck with your research.
Take it easy,
Mark.

Title: Re: Can anyone help me??
Post by Charlie on Sep 12^th, 2003, 4:09am

Welcome to our madhouse. If you look around you'll find all kinds of good ideas here that are not so invasive. I've been here exactly three years and I've yet to read a truly positive post on these procedures. Others here may have some better information though.

Here is a link for a technique I and others have found successful. I hope you give it a try:

http://www.netsync.net/users/charlies/

Stick around and let us know how you're doing.

Charlie

Title: Re: Can anyone help me??
Post by UnsolvedEquation on Sep 12^th, 2003, 4:24am

Your page is very interesting Charlie :) Never heard of it ... but still ... its worth a try
:)

Title: Re: Can anyone help me??
Post by Seth on Sep 12^th, 2003, 11:11am

:o Thank you... Last night was the first of the start of the demon that is to come. I was taking ( APO DIVALPROEX ) 1000 mg a day. Till this moring.. woke up at 01:00 vomiting my insides out. Will be trying a new med later today.. the name of it I am not sure of till I get it home. thanks all that have responed to my post. UnsolvedEquation thanks, I spent an hour finding the information on the procedure and with my luck something would go wrong. but there is another question???? Does anyone know of a good nero in edmonton canada... the one that normally talk to is back in Toronto... and the one here in Edmonton, I feel just does not seem to really care or is just to busy to really consult about these "beasts".

P.S.
In good working order today... Thank you to the one who created this site... May the heaves guide you. ;D

Title: Re: Can anyone help me??
Post by forgetfulnot on Sep 12^th, 2003, 12:25pm

Seth, you may be asking about Gamma Knive surgery.

Here is a page describing it, keep in mind these folks make money from this.

http://www.gammaknife.uab.edu/overview/

Lee

Title: Re: Can anyone help me??
Post by Big_Dan on Sep 12^th, 2003, 12:33pm

... Hey Seth... sorry you need us, glad you found us...

... take an oar/shovel/broom/flamethrower and get to work... search the site, and find out all you can.

... for clusterheadaches, you couldn't have found a better place...

... btw... everyone that ever flew over the Coo-coo's nest, landed here.

-Big Dan

Title: Re: Can anyone help me??
Post by UnsolvedEquation on Sep 12^th, 2003, 3:08pm

I don't think it's actually the Gamma Knife...but then again...it could be with just a different name.
Check this out :
http://www.reddinganesthesia.com/radio_frequency_lesioning_faq.htm
My letter of "Pre-Procudure Orders" says :
the procedure is done on the L C2-C3. (Vertibrae in the neck)

Title: Re: Can anyone help me??
Post by OneEyeBlind on Sep 12^th, 2003, 3:19pm

Just think about reading around the old posts, check out all the meds, and really think about the surgery. Surgery is a last resort ............. and I would hope you could find some drug that would help before going that route !!!!!!!!!!!!!!!

Good luck with whatever ya decide !!!!!!!!!!!! And I'm hoping whatever it is finds ya pain free !!!!!!!!!!!

Title: Re: Can anyone help me??
Post by cathy on Sep 12^th, 2003, 3:40pm

Hi Seth .....Sorry you are suffering but think long and hard before going under the knife have heard it's not all it's cut out to be......

Check out the info here and learn about all the options, hope you find some PF times one way or another and good vibes from across the pond!

Cathy :)

Title: Re: Can anyone help me??
Post by BobG on Sep 12^th, 2003, 3:44pm

Hello Seth,
Please click on these before you consider surgery.

http://www.clusterheadaches.com/wwwboard/messages/100398.html
Margi (7-12-01) list of posts about NOT having surgery

http://www.clusterheadaches.com/wwwboard/messages/74124.html
Rodger Griffin (1-11-01, Stereotactic Radio Frequency Rhizotomy)

http://www.allsands.com/Misc1/gammakniferadi_uux_gn.htm
describes Gamma Knife Radiosurgery

Title: Re: Can anyone help me??
Post by Seth on Sep 12^th, 2003, 10:58pm

Thank you... been reading the posts... Going to try lithium tomorrow... Just alittle worried about the side affects that come with it... so far eveything elese have been horribly wrong.. one time it was lag cramps to the point of not being able to walk.. anthor was violently vomiting.. and the list goes on an on an on... seems as if each meds does work till my body decides nope... try somthing else... But I guess after 15 years with the beast a few more trying new meds till I find the right one will have to do for now.

pain free right now... soon sleep... at least try to get a few hours in.. he he ha ha oh.

Title: Re: Can anyone help me??
Post by Prense on Sep 13^th, 2003, 9:21am

Seth,

What all meds have you tried as preventatives and abortives? Also, are you chronic or episodic?

BTW, Welcome aboard!

Chris

Title: Re: Can anyone help me??
Post by Miss_Deleny on Sep 13^th, 2003, 9:31am

Welcome Seth. Sorry you had to find us but glad that you did. Like others have stated before me, take a good look around, read read and read some more about all the meds and information there is here and print out what you feel you will need for your next doctors appointment.

I would have to agree with others here .. try and find the right combination of meds before trying any of the surgeries out there. Going under the knife is very serious business no matter what procedure they do.

Wishing you PFDaN's,
~April~

Title: Re: Can anyone help me??
Post by Pinkfloyd on Sep 13^th, 2003, 5:30pm

Seth,
Before you agree to surgery, please consider this..

www.clusterbusters.com

good luck on whichever road you decide to travel,
PF

Title: Re: Can anyone help me??
Post by nancyc on Sep 13^th, 2003, 6:06pm

Dont think you want to have that done..email Barb D at BDHCCA@aol.com...she can advise you on this..she is one wise LADY..smiles,nancyc

Title: Re: Can anyone help me??
Post by Donna on Sep 13^th, 2003, 9:14pm

Welcome.......hope you stay.

If you will please let us know what you have tried, we just might have something new for you that has helped a number of us...like Verapimil, oxygen, Imitrex, Prednisone..........oh the list gets rather long. And then there are the non-medical suggestions that might help you too.

Let us hear more about what you have tried.

Title: Re: Can anyone help me??
Post by K. on Sep 13^th, 2003, 10:39pm

Welcome.
You've come to a good place where you will learn a ton about CH. Study the alternatives before you consider surgery. Wishing you PFDAN.
K.

Title: Re: Can anyone help me??
Post by Seth on Sep 14^th, 2003, 12:06am

:D Hey thanks

He are some that I can remeber, vapirmal, esgot, imitrex, apo divalproex.. and the list starts there.. at first the vap worked.. then it stop some time after.. my body be came tolerant of it and a few other blood thinning and calceim blocking ones.. When ther frist came I did not now what the hell.. I used to take 6 to 9 extra strength tylenol... this was years ago... now hehe.. that is just candy to me... even the meds the doc gave t3's t4's... I just started the lithuem... I sorry about the spelling... A little off tonight... The doc that I see said that he would not give the o2... But that is ok.. I have a way to deal with it at night... Not legall... but it helps and does not kill my kidneys... some one asked if they were chornic or episdoc.. all I can say is that from septemer to april/may I have them.. 3 to 4 times a day. lasting about 1 to 2 hours... See I am a stay a home dad so getting rid of or just stopping them is great. oh even during the months that I normally do not have them... they seem to dig there claws into my eye and face... Back home I would go to the clinic at lunch from work and sit there for a while... here I went to the hospital and I had to wait 4 hours... by then the pain had ceased but not gone... never gone can always feel it... just sitting there. anyways.. the hospital just gave me t3's and set me home... well what the phuk... it seems like they just think it is just a headach and it will go away.. well ya it will go away a little bit... but wait till the next time... I just wish that they could feel the pain, the screaming, the crying becuase you are so tried that you need to sleep but the beast says no way... haha you can not sleep. It is time for me to play again. that is what I wish they could feel... then maybe they would find a real cure for it. Sorry for the rambling has been a long day.... any ways I am now taking this lithuem about 900mg a day now... the sid affects do not seem to bad... shakiness, triedness, drowiness, need to pee more.. and thrusty more... but hay... more water is good.. helps the pain a bit...

anyways.... should sleep right now before the beast comes flying out of its cave.

P.S. Thanks this help alot.
seth

Title: Re: Can anyone help me??
Post by Seth on Sep 14^th, 2003, 12:19am

there is one thing that helps a bit... I have been reading the poastes and this seems weird... but lucky for me mine are at winter.... I keep my hair short lmost shaved... when I have then I stick my head in the snow... it is weird but even when there is now snow. I place ice cubes on my temple my eye my neck my face.. I guess basicly numding but head.... does not always work but helps... sometimes... but after 15 years hey.... not weird to me anymore.... just to my new neighbours... hahaha.... if any one is wondering whenthey first started.. I was 11... I am now 26... it was 3 to 4 years after on of my accendents.

later..

Title: Re: Can anyone help me??
Post by BobG on Sep 14^th, 2003, 1:10pm

about the verapamil......

Quote:

my body be came tolerant of it and a few other blood thinning and calceim blocking ones..

How much were you taking? Some have success with 400 daily but others are way up at 800. And some use lithium and verapamil together.

The snow thing sounds funny :D but many reported doing the same thing. Or standing on a cement patio naked in the winter wind. Cold is good for many of us. Frost-bite isn't a dirty word here. Ice packs are good for polar bears and clusterheads. ;D

Title: Re: Can anyone help me??
Post by Seth on Sep 14^th, 2003, 5:54pm

I was taking teh vap about 480 mg daily. the doc I have now wants to try the lithuem just buy it self... abot 900 mg daily... This propbly seems small to others .. but my system either builds a tolerant to it or the side affects become very nasty.... I have been hospitlized a few times because of the side affects.... The doc from back home seemed so cool about this stuff.. she was so understanding.... but the one here seems so cold... but it just could be me... but so far today the lithuem seems to work..... the pain is one just sitting there his has not gone full blown yet.... my doseage will increase in a few days so I hoping that it will just stop it entierly... my spelling is off sorry..

P.S.

Thank you all for helping... It has been great to relat to others.... The world dose not seem so dark now.