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        New Message Board Archives >> 2002 Posts >> Diagnose change sucks!
        
(Message started by: Stampertje on Dec 23^rd, 2002, 8:48am)

Title: Diagnose change sucks!
Post by Stampertje on Dec 23^rd, 2002, 8:48am

Since a long time I am starting to feel some improvement. The attacks come less and less during the night. I sometimes even have two nights sleep in row!!! The attacks in the daytime start to go from KIP9/10 to KIP7/8 on average.

I think the lithium is finally starting to kick in. I'm now getting 400 mg slow release in the morning and in the evening. The doc is closely monitoring me, because my liver isn't real happy with this stuff.

The down side is that I'm really having a problem with functioning normal. My memory and concentration are a disaster. My body is definitely not agreeing...

My neuro has changed his diagnose from episodic to chronic... I'm just F@#%&* 23 years old!!!!
For comfort he told me it could change back to episodic, but had no answer when that would happen.

Just had to put this on the board. No one near me gets the impact of that small diagnose change... "And I should be used to those meds by now, so stop whining and complaining." That's all they can say and think...

Thanks for listening.

A merry and painfree Christmas from Holland to all!!!
Rik

Title: Re: Diagnose change sucks!
Post by Roxy on Dec 23^rd, 2002, 9:34am

Can't tell you how sorry I am that they changed your diagnoses. When the doctor told me...chronic...my heart just dropped. But, there is the hope that we will change back to eposodic at any time. There is that chance.

Sorry you are having a hard time with the meds, maybe that will also change, but great news that you are able to sleep.

Merry Christmas, and hope you have many PFDAN

R

Title: Re: Diagnose change sucks!
Post by ave on Dec 23^rd, 2002, 9:52am

I am sorry for you Stampertje. Lithium does do that to people.
Are you taking Verapamil alongside? Maybe the lithium dose is a bit high. Won't do any harm to ask your doc.

BTW, are you thinking of shrooms now? Should be easy to get.
Keep on fighting.

Title: Re: Diagnose change sucks!
Post by Silver_Dolphins on Dec 23^rd, 2002, 10:10am

I am so sorry Stampertje.

Your post was very disheartening for me. I had two nights of rest with mild daytime attacks (kip4-5, once or twice a day, no shadows). Last night, the Beast visited, fortunately it was only a kip6. The Neuro has me on Frova and Depakote. He is out of the office this week, but a paramedic friend is bringing me O2 today. I am in week 16 (or 17) of this cycle.

I was wondering, when you go form episodal to chronic?

PFDAN'

Silver Dolphins a/k/a Barry

Title: Re: Diagnose change sucks!
Post by Stampertje on Dec 23^rd, 2002, 10:16am

My doc took me completely of the verapamil and changed to lithium. He said I would have some kind of neurological side-effect if the verapamil was still in my body. But I will ask him again next time I see him. That will be half way January.

I'm not really the guy to do that stuff with the shrooms. I "blowed" a couple times when I was still in school and I liked it. But a year ago I took one again and I got really sick. :-[
But who knows... This whole thing certainly makes me think the last two weeks. (If possible!! ;D)

Title: Re: Diagnose change sucks!
Post by Lenny on Dec 23^rd, 2002, 6:53pm

How long has this cycle been? Why did your doc take you off of the verapamil? Do you have any heart problems?Is your doc a neo.,and is he familiar with clusters? If not maybe you might want to get another doc.

There's a hospital in the city of "Pilburg" ( academy hospital )that specialize in neurosurgery ( i dont know the name ). PFDAN to you!! Hope you and yours have a wonderful holiday season!!!
Lenny

Title: Re: Diagnose change sucks!
Post by jonny on Dec 23^rd, 2002, 7:05pm

on 12/23/02 at 10:16:38, Stampertje wrote:

Rik,

Unless there is something else wrong with you like low blood pressure, you Doc is a complete jerkoff!!!

Ive been taking 480 mgs Verapamil along with 600 mgs of Lithium EVERYDAY for over ten years, its the chronics cocktail for alot of chronics.

Just so you know, life does not end cause your chronic. I started chronic at 14 yrs old and im 40 now.

Clusterheads cannot be killed, atleast not by some punkass beast!!!!!

......................jonny

Title: Re: Diagnose change sucks!
Post by eyes_afire on Dec 23^rd, 2002, 7:10pm

Hi Stampertje. I can only offer you a little bit of encouragement. In September 2002 I became chronic... however a month later my CH diminished so that I have only been having the so-called 'painless' CH attacks for the past 2 months. So now I get all the CH symptoms except for the pain. I don't know why that is happening. Maybe it has something to do with that 'alternative' treatment that Ave mentions, but maybe not http://home.att.net/~witchfinder/confused_smiley.gif. (psst... take the 'alternative' treatment as a tea to minimize sick stomach... avoid eating the flesh).

Title: Re: Diagnose change sucks!
Post by Ueli on Dec 23^rd, 2002, 7:58pm

Stampertje,

I must completely agree with jonny, I never heard of any reason why Verapamil and Lithium should not go together.
You didn't tell us how much Verapamil you were taking, but the most eminent researchers on CH, Prof Peter Goadsby and Dr Manjit Matharu write in the article http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature:
Up the verapamil until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved.
Did you reach any of these limits?

There is not much to diagnose on the difference between episodic and chronic cluster headaches, it is as simple as counting to twelve. The IHS criteria define chronic as "No remission longer than 2 weeks in a 1 year period". And since IHS stands for "International Headache Society", your neuro should stick to this definition too.

I suggest that you start looking for a neuro who knows how to treat CH. But should you stick with your old one, print out the article quoted above, mark the passage on Verapamil and show it to him. Also ask him where to read about the neurological side-effects or interactions between Verapamil and Lithium; tell him you have a friend very much interested in this.

PFNADs
Ueli

Title: Re: Diagnose change sucks!
Post by suzy617 on Dec 23^rd, 2002, 8:03pm

Jonny, Did you just age 14 years overnight? ;D

suzy

Title: Re: Diagnose change sucks!
Post by jonny on Dec 23^rd, 2002, 8:09pm

No, why?

Time for my geritol and bed.

...........................jonny

Title: Re: Diagnose change sucks!
Post by suzy617 on Dec 23^rd, 2002, 8:30pm

on 12/23/02 at 19:05:44, jonny wrote:

Just so you know, life does not end cause your chronic. I started chronic at 14 yrs old and im 40 now.

I'm confused, your profile says your a much younger man. ;)

suzy

Title: Re: Diagnose change sucks!
Post by cootie on Dec 23^rd, 2002, 8:43pm

Wow.....from jonny's pics I seen he looks purdy HOT fer 96........Happy PF holidays......Pam, the mindless wonder..........

Title: Re: Diagnose change sucks!
Post by OneEyeBlind on Dec 23^rd, 2002, 11:56pm

Stamperpje, sorry to hear about the latest turn of events ... hopefully you'll join us pain free once in a while folks again.

Title: Re: Diagnose change sucks!
Post by Jarvis on Dec 24^th, 2002, 12:46am

Stampertje hi..This wont help much but just so you know chronic does not allways mean forever. it just means you dont get a big break for a while... When I was around 24/25 I went for 3 years chronic and then back to regular episodic many years then chronic 3 yrs again but I had a 3 year remission after that one. Now cycling again.... A funny thing during that first long spell I went to see a doc at U of Mn. and he told me that the CH usually disapears when you get older. The next week I had a birthday and got older and my clusters went away..... for 13 months. I allllllmost believed him. Just goes to show that many supposedly well learned docs dont really have a clue about this thing. The guy that told me they go away was head of the neurology center.

Title: Re: Diagnose change sucks!
Post by Stampertje on Dec 24^th, 2002, 3:34am

Thanks people.

Thanks Jonny for putting me on my place again!!! I'm not in the position yet to feel sorry for myself... And I am never going to allow myself to come there as well!

Great info Ueli. I'm definitely gonna print that...

Just some extra info:
My neuro wanted to put me on Lithium right away, because he had "great succes" with other clusterheads. I on the other hand asked him to put me on Verapamil, because I read here that was the best to start with. But after he had upped the dose to 600 mg a day and still not the wanted result, he convinced me to take Lithium.

He said I was cronical, because he doesn't understand my cycle is going since June/July. After hearing Ueli I have faith my CH is not cronical.

Somewhere next year there is going to open a "headache clinic" in Holland. This will be in a couple of city's and they will be linking their info.
So I am going switch docs as soon as one has opened near my home.

BTW Jonny, is your cocktail kicking the Beast away completely?

PFDAN Stampertje

Title: Re: Diagnose change sucks!
Post by ave on Dec 24^th, 2002, 6:53am

Stampertje,

your doc IS a real nitwit! In this country of yours and mine, There are official protocols for the treating of cluster headaches. You have to start with Vera, then add oxygen, then consider pred or/and imitrex. You don't start off with lithium that has to be monitored so very closely.

Your doc is not following these hard and fast guidelines. I wonder what the insurance/social insurance will say - I hope they will pay up.

No need to wait for a headache clinic or pooling resources and info - it is already happening. It is just your doc that's not doing what he should.

Can't you change neuro's? Try to convince your huisarts (fam. doc) to refer you to a different one. I know it is difficult to get appointments at the mo, but whereabouts are you? You might want to contact the Academic Hospital in Leiden. They have ongoing cluster research.
Good luck and mail me if you want to know more.

Title: Re: Diagnose change sucks!
Post by Ann on Dec 24^th, 2002, 7:42am

Hey Rik!
I'm sorry you got some bad news lately, but I think it's bogus and you don't need to panic quite yet! If you've only been in cycle since June or July, you can't be declared chronic yet. You have to have suffered for one full year without breaks of more than 2 weeks. I'm getting there myself! :o but thanks to my lithium and verapamil combo, I'm getting nothing but shadows. Unless I have a beer, which will bring on a kip 3 or 4. (Tried that last Friday just to see! ;D) I'm taking 360 mgs of verapamil and 600 mgs of lithium. So far so good. Talk to you neuro hon....he's way off in la la land if you ask me!
Hope you have a pain free Christmas.
hugs
Ann

Title: Re: Diagnose change sucks!
Post by sailpappy on Dec 24^th, 2002, 9:33am

;DStampertje,
I may be the only one to say this to you, but the Lithium wiped out my short term memory in only 1 month of use, it affect people differently, it is usually associated with Manic/Depresive dissorder and is supposed to keep you from having mood swings.
No Highs, no Lows and in my case no memory.
It has taken 25 years to alter the affect this drug had on me, so be very careful if you are noticing memory problems. Point this out to someone close to you so they can moniter you, because you may not remember it at all. Not trying to be humorus, I literally could talk to my child and walk out of the room and never remember having the conversation, until my wife told me what was happening I did not know it was occuring, Take care. Pappy

Title: Re: Diagnose change sucks!
Post by jonny on Dec 24^th, 2002, 1:09pm

on 12/24/02 at 03:34:26, Stampertje wrote:

BTW Jonny, is your cocktail kicking the Beast away completely?

No, The best results I can get is 80%. For the 20% that sneak through I have 02 and Zomig, but even then some are just so bad nothing will stop them.

Sometimes they will break through worse than others so I just up the Lithium to 900 mgs until they calm back down. Actually, Thats just what I have been doing for the last few weeks, seems its a rough go this time around. Damn good thing I dont have a gun in the house......LOL ;D

.........................jonny

Title: Re: Diagnose change sucks!
Post by Mark C on Dec 24^th, 2002, 2:51pm

on 12/23/02 at 19:05:44, jonny wrote:

Clusterheads cannot be killed, atleast not by some punkass beast!!!!!

......................jonny

Fuckineh!!!

Sorry about your diagnosis change Rik, that just sucks. I hope when you go back in Jan he will have better news. I hope you have good Holidays, hang on brother.