My doc keeps upping my intake of varapamil, im at 720 mgs a day wich from what ive heard is very bad, i also do the summatriptan injections,4 mgs,doing about 3 injections a day.I called and questioned the nurse today, i told her i didnt feel comfortable taking that much verapamil,and also from what ive heard it does not take months for verapamil to start working. I told her i wanted to try something else and she got mad at me saying i wasnt giving the verapimil a big enough try, bs i have been using it for a month and a half now and the clusters have been worse than ever,4-5 a day,maybe some of them are just rebounds,im not sure.

I dont know what to do ,should i keep following their template or should i put my foot down and say im done with the V?


Help Help Help

Aaron

Sorry you're having a rough time.  We all have been there at one time or another and understand your frustration.

I have heard of some folks being on as much as 900mg Verap.  Others use a combo of Verap and Lithium with great success.  Do you have 02?  I really do believe that the more Trex I use, the more often I get hit. 

You also may want to check out Clusterbusters.com.  Lots of useful info there.

Hang in there.

Jeannie

I have been asking the nurse over the phone if i can try o2 they wont let me ,they want me to follow their plan,why im so frustrated. I have been wanting to try it though. And another thing i dont get  any remmision, so me being on V all the time,will that hurt me?

There are ways to get o2 without a script.   Someone will be along to help you with that, I'm sure.

As for long term use of Verap.... I have been on it for more than a year.  I'll take it as long as it continues to work for me.

ETA:  I have thrown in an alternative method as well and have been pretty well controlled ever since.

Your alternative method?

Check out Clusterbusters.com.   Everything you need to know is there. ;)

I'm not concerned about the amount of Verap you are on.  Have been on higher dosages for a couple of years.  I am however concerned about your use of Trex.  That much can be problematic, not to mention expensive, and can cause rebounds.  If they won't give you O2 you need a new Dr.  They obviously aren't up to speed on CH. 

Jeannie gave you excellent advice.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; It has worked VERY well for many of us.

Jerry

That dosage of verapamil is not unheard of.

As to your doc's withholding of O2, four words:

Fire your f*cking doctor.

You might be able to abort hits with half doses of your sumtriptan injections a la the imitrex tip here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Personally I like to use the non toxic O2 as a first line abortive, imitrex injections just as a back up.

If you're in the US you could potentially get O2 without a prescrpition at a welding supply place. Medical supply places usually don't have the right regulator or mask anyway, so you might wanna see if you could hop on ordering those right away. That would be a high flow regulator (as discussed in the oxygen info link to the left), and a non rebreather mask such as the optimask which is the popular choice around here.

Brew wrote on Jan 12^th, 2011 at 7:23pm:

That dosage of verapamil is not unheard of. I take 960-1040 mg/dy in divided doses...immediate release (NOT extended release..it don't work) and has been a sanity saver for me. For break through hits it's oxygen...MANY use oxygen only...I don't have the guts....but if I was you, I would get O2 "by any means necessary". As to your doc's withholding of O2, four words: Fire your f*cking doctor. BING, BING, BING...we have a "winner, winner, chicken dinner"!!!! Best, Jon

Quote:

also from what ive heard it does not take months for verapamil to start working.

10-14 days


Quote:

im at 720 mgs a day

How long have you been at that dosage?

2 days at that dosage ,im just concerned for my heart,and i have been having rebounds like you wouldnt believe. just miserable everyday. I wouldnt say they are withholding o2 they want me to take all this verap first but everyone keeps telling me o2,. i have heard if it dont work at 460 it prob wont work at all specially because im chronic not episodal .still not sure what to do.

Quote:

I wouldnt say they are withholding o2...

I would.

This guy doesn't understand the difference between a preventative and an abortive. Fire his ass.

TheVerbalArchitect wrote on Jan 12^th, 2011 at 10:35pm:

2 days at that dosage ,im just concerned for my heart,and i have been having rebounds like you wouldnt believe. just miserable everyday. You should be concerned with high doses of ANY med...as with this one...regular (6 mo intervals or when dose is increased exponentially)...ecg's are mandatory...if your doc don't...dump him/her. Many of us have experienced success with this med....USUALLY after a cycle breaker to start (like prednisone or methylprednisolone). Please don't give up too soon.... I wouldnt say they are withholding o2 they want me to take all this verap first but everyone keeps telling me o2,. Yup...they ARE withholding if they aint giving...there's a reason "everyone" says O2...it fricken' WORKS...minimal side effects...cheaper than almost anything but air...easy peasy............ i have heard if it dont work at 460 it prob wont work at all specially because im chronic not episodal .still not sure what to do. 480 is my maintenance dose...960+ is the "bomb"...don't know where you heard "if then" from...but it might be wrong...I think it is.... Best, Jon

As you've been told, two days aren't enough. And chronic vs. episdodic here isn't an issue. Episodics can lower or drop their verapamil doses when the cycle ends, chronics don't. I've been on verapamil for many years, and am currently at 400mgs/day. The clusters are managed with energy drinks and O2. I'd move heaven and earth to get O2 if I were you. Blessings. lance

Wow guys,thanks so much for the input :)
it helps more than you think
and I will keep you updated

One Love

The V.A.

Where do you live in Mad-town?  I'm on the east side, if you ever want to grab a coffee, let me know.

Brew wrote on Jan 12^th, 2011 at 7:23pm:

That dosage of verapamil is not unheard of. As to your doc's withholding of O2, four words: Fire your f*cking doctor.

All great advice I don't have anything to add except that maybe that should be a new ch.com abbreviation Fire your f*ing doctor= FYFD :D

Hang in there, your not alone!

Getting O2 on friday, detoxing this week for alt. and agostino coffee would be nice. I am in Sun prairie now but I come into Madison lots.


One

Make the time to meet with Thomas for coffee!  He's a great guy and has been a big encouragement to me for several years on this board and in person.  I'm jealous!  Guess I ought to just drive up there myself one of these days.

Jerry

lol, went to dinner in Sun Prairie wednesday and had an open house out there on Sunday.

Thanks Jerry!  You're welcome to come up anytime.

TheVerbalArchitect wrote on Jan 18^th, 2011 at 1:06am:

Getting O2 on friday, detoxing this week for alt. and agostino coffee would be nice. I am in Sun prairie now but I come into Madison lots. One

THIS is the best news ever!!!!   Might I suggest waiting to detox till you have the 02?   Just a thought.

Jeannie

Let me know if you guys decide to get together for coffee. I could probably slice a few hours out of the middle of my day to meet you.

Let me know when you two get together for coffee and Ted and I will drop by. 

I did like you and followed my neurologist's plan of action- I have now been suffering for over 1 year.  I always thought that I was doing the right thing- being a "good patient", now I realize that I was just prolonging my suffering.  I have switched doctors once already and am now in a search for a new one.  At this point I need someone who is going to work for me and let me be an active participant in my own treatment. 

If you are working with a doctor who is not willing to listen and support you, my suggestion would be to look for a new doctor.
I wish you the best luck and health!!!

I agree, i was messing with crappy docs for the past 3-4 years,i feel like i wasted all that time when i could have been here ;)

The V.A.

Read and acknowledged, Brew and Karla.

Copy me in on that too and I'll try to shake it up there.  You really aren't THAT far away and LouCon was WAY to short!

Like I said before.  Be your own advocate....If you don't fight for what you NEED no one else is going to fight for you.

Read and print out everything you can get your hands on.  Be informed.  Some Dr's get intimated by well informed patients and let their ego's get in the way.  If this happens fire them and move on.

This cycle I am working with my GP.  He's has been wonderful and has given me what I needed.  He after speaking to me knew I was not on a drug seeking mission and understood that I have lived with these for over 30 yrs and I may have more knowledge then he at this point.  He ordered the O2 on day one and asked how I was to use it.  He ordered the imitrex and left it to me on how I needed it and he gave me fiorcet to use as I saw fit (I only have used 3) I sometimes get migraine with clusters.

Stop trying to be nice and polite when you are dealing with a Doctor.  If they are not going to help you in the first visit move on.  Those that understand Cluster understand when we go in cycle we tend to need a lot of hand holding until we fall into a routine.  I know I do.  Once there I can then help other.  But we all have bad days and panic when we are in pain just part of the cycle.

Blessings,
Sami

Just wanted to throw out my Verapamil doses. I love my new doctor, he is the Director of a huge Headache clinic and answered every question I had and put me on a plan that is working so far. You can check my post in the Getting to Know Me area if you want to know the full plan I'm on.

Verapamil:
Days 1-6: 80 mg 1x/day
Days 7-9: 80 mg 2x/day
Days 10+: 80 mg 3x/day

I do this until I have 30 days of control, then I'm off it. I appreciate that my dosage is not extreme and that I will not be on it forever. I am episodic not chronic, just FYI.

And about O2, I just got mine this weekend...it's amazing.

dault

A doc that's knowledgeable AND listens to you, congrats, that's a real find. If 240 mg works as a prevent for you, that's great. If not, some go as high as 960 mg a day to get relief. And 02, yeah, it's pretty sweet! ;)

Joe

Thanks man, I knew from the moment I met him that he was legit. He did an exam and then told me exactly when I had my last headache and where it was. We then went to his plaque filled office (he was incredibly sincere and empathetic) and discussed my situation for over an hour. I was impressed with everything about him and will pass any and all information on that I can find. I read a Clinical Report that he gave me called "Cluster Headache: Diagnosis and Treatment" published recently in 2010. He said it was one of the most recent papers published on the topic and really gives a great overview of CH. I hope I'm able to contribute as time goes on. I've dealt with them since 2003 so I guess, like most of us on here, I know what I know...

dault

Quote:

He did an exam and then told me exactly when I had my last headache and where it was.

How, exactly, was he able to pull this off?

I have been to specialists before and this man was skilled beyond anyone I've ever talked to. I do believe the main reason he was able to be so specific was due to the irritation of the blood vessels in my right eye. How he knew it down to the day...experience I guess.

dault