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        New Message Board Archives >> 2007 General Board Posts >> what to do now
        
(Message started by: Hammered2 on May 4^th, 2007, 8:18pm)

Title: what to do now
Post by Hammered2 on May 4^th, 2007, 8:18pm

This is my fifth cycle. I use trex 2mg, O2, 460mg of verapamil. They come for 6 to 10 weeks and tapper off and go away for two to three years. This time they tappered off and returned to 2 to 3 a day. I did stop the verapamil. My have caused it. My doc says lithium is next. I am afraid of lithium. My wife talks of surgery. Total and permanent? She is about to leave. What's next, what to do? :-/

Title: Re: what to do now
Post by Jonny on May 4^th, 2007, 8:23pm

You do the Lithium.....Ive been taking it for 15 years everyday.....if it dont suit you, you can always get off it.

Give it a shot....it did wonders for me for that long!

Title: Re: what to do now
Post by BB on May 4^th, 2007, 8:39pm

Stopping the verapamil too early may cause the cycle to restart. Talk to your doc, it can be a good idea to restart it now.

Lithium is safe to take. Lithium and Verapamil is a great combo for many CHers and many have been on them for years without any problem.

Surgery is not a cure all and does not provide permanent relief. There are a lot more side effects/problems with surgery, depending on which type, ranging from not working to facial drooping of muscles and of the condition comming back anyway or switching side.

Its hard to keep cool and calm while being hit hard, but it will be the most important thing to learn to do. Your wife will cope better if she sees that you are coping better. Coping well doesnt mean finding the perfect medication, its all a state of mind.

You can ask your wife to come here and post as well and we will give her the support she needs to help her along. Supporters are valued very highly here.

Have you been to see a good neurologist who is experienced with treating headaches?

For now, talk to your doc, get back onto Verapamil and Oxygen and maybe consider lithium and another short course of pred to get things under control. It WILL pass.

Hang tough and painfree wishes to you.

Annette

Title: Re: what to do now
Post by chewy on May 4^th, 2007, 8:40pm

What is making you think the verap caused it?

Title: Re: what to do now
Post by vietvet2tours on May 4^th, 2007, 8:41pm

on 05/04/07 at 20:40:01, chewy wrote:

What is making you think the verap caused it?

Cuz she is a Doctor. Sheeeeeeeesh

Title: Re: what to do now
Post by Gator on May 4^th, 2007, 8:52pm

Verapamil is the leading preventative for Episodic sufferers. 480mg is an average dose, but some people require doses up to 960mg. Maybe instead of getting off it, you need to go higher. You should have an ECG done before each dose increase over 480mg.

Lithium works for many people, but has this stigma attached to it because of it's primary use. Screw the stigma and screw what anyone else thinks about you taking it. None of their business anyways. What's more important, pain relief or the opinion of someone who could never understand your pain?

There are other preventative meds as well: Topamax, Depakote and Neurontin just to name a few of the more popular ones.

There are also alternative solutions in the form of Kudzu, LSA, LSD and psilocybin. Not to mention various combinations of vitamins and supplements.

You have a lot of things left to try before surgery. No surgery is 100% guaranteed to stop your attacks. After a few months to a few years, the attacks usually come back either on the same side or switch to the opposite side. There is not one surgery that has a success rate that would make it viable to me and I'm chronic with no working preventative and 3 - 5 hits every friggin day.

I'm sorry your wife is having a hard time with this. Maybe you could get her to come here and talk to some of the other supporters. It might help her to talk to someone who has been there and understands what she goes through. Supporters suffer their own brand of hell watching us go through ours. Make sure she knows you appreciate her.

Keep you chin up and get busy doing some serious research here and on the OUCH website.

Keep us posted on how things are going and if you find you need to bend an ear now and then, that's what we're here for.

All the best,

Mike

Title: Re: what to do now
Post by Rosybabe on May 4^th, 2007, 10:24pm

hang in there man!! You can beat the beast!! It was gone before, you can make it go away again...

please tell you wife to come over here and read posts from Erika at the supporters section, she may see a light with those...

being a sufferer is tough but being a supporter is even harder because they not always undertand what we are going through or what they can do to help us...

try the medication that your Doctor is suggesting, anything is better than living with the pain.

Best wishes for you!!!

Title: Re: what to do now
Post by Hammered2 on May 4^th, 2007, 11:05pm

Thanks to all of you for such a quick response. I will call the doc and give lithium a try. I am back up to 480 verapamil. Had one hit today. This place is great. How rare is our problem. I have not met but one other personally. Someone is doing a good job getting the word out because I had trouble finding a doc who knew anything on the first two cycles.

Title: Re: what to do now
Post by TxBasslady on May 5^th, 2007, 1:00am

Get yourself a clustermasx to use with that 02...and hit that 02 just as soon as the pain starts.

Lots of good ideas and remedies here to try before surgery, IMHO.

Some of us have been able to forego all the meds and use strictly 02 for our CH.....anything's possible!

Hang in there....ask any questions ya want or need too.

Jean

Title: Re: what to do now
Post by Erika on May 5^th, 2007, 2:18pm

if your wife wants to talk to others who sit in the spectator seats, feel free to have her email me or just talk to me here. I would be willing to do anything to try to pay back some of the support we have received!

I will NEVER be able to pay it all back, even if I tried everyday - this place is saving our lives!!

Erika
gem5454@bellsouth.net
anytime!!

Title: Re: what to do now
Post by chucknot on May 5^th, 2007, 7:16pm

Go with what the supporters are saying about getting your wife to view thier posts or enter the dialogue... if all that fails, well really, as a local farmer said when his wife left him for the bright lights "It ain't necessarily a bad thing."

Not being glib really, just a realist. There are a lot of great supporters on this list and in our homes (my wife is one). You can try and contain your suffering only so far and you can try to have a dialogue with your wife, but beyond that absolve yourself. You are not causal the to weakness of character of another person.

Most importent: Surgery is a heavy decision and should not be made on the basis of a "loved" ones threatening behavior (real or perceived). I can not even imagine the lack of love or respect if it is threatend expressly in this situation. And I can not imagine making such a decision to potentially disfigure or neurologically damage myself for want of "love".

Title: Re: what to do now
Post by BB on May 5^th, 2007, 10:07pm

Hi again,

How are you doing now ? Have you managed to see your doc yet?

Has your Verapamil kicked in ? Are you able to kill those that breaks through quickly with oxygen ?

Also try chugging a nice cold Red Bull the minute you feel the twinge then hit the oxygen, you may be able to get rid of it within a few short minutes.

Then life is once again beautiful! :)

Take care and let us know how you go.

Annette

Title: Re: what to do now
Post by Redd on May 5^th, 2007, 10:21pm

on 05/05/07 at 22:07:16, BB wrote:

Also try chugging a nice cold Red Bull the minute you feel the twinge then hit the oxygen, you may be able to get rid of it within a few short minutes.

Then life is once again beautiful! :)

Take care and let us know how you go.

Annette

Jus a personal note... I chug the Red Bull room temp. Chilled seems to slow down the the ability to get the stuff into me. The colder it is the slower I can can chug it. It may be just me, but the point I want to make is this. hen it comes to chugging Red Bull or any generic equivilent, test your tolerance first and chug at the temperature that is best suited to you. The faster it gets in you is the key. Warm or cold is irrelivant.

Title: Re: what to do now
Post by BB on May 5^th, 2007, 10:31pm

Thanks Pegg,

I just also remember that someone said if its flat then its easier to drink quickly too and the trick is to losen the lid before you need to use it, then you can either drink it cold or room temp. :)

Its a matter of personal preference.

Annette