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        New Message Board Archives >> 2004 Posts >> Ever Feel Like A Lab Rat?!
        
(Message started by: mynm156 on May 2^nd, 2004, 5:25pm)

Title: Ever Feel Like A Lab Rat?!
Post by mynm156 on May 2^nd, 2004, 5:25pm

Hello All,
It is sad and maybe it is just FRUSTRATION but I have seen several Doctors including Neurologists and sometimes no matter what I tell them they want to push this drug or that drug. Run the same tests over and over again (even when I bring the results of the last time) Some even when I tell them (I HAVE TRIED THAT DRUG) Will say "lets try it again just with a HIGHER or LOWER dose!" >:( Obviously there is now definitive treatment for CH or we probably wouldn’t be here. It is just after what seems like my whole life of dealing with these you would think that something would help. Imitrex IM does seem to help some for me but I have had no success in finding a preventative treatment. I am sorry if there is no real question to this post I guess that I just wanted to SCREAM at my computer screen about my FRUSTRATIONS!!

Good luck everybody!

MYNM156

Title: Re: Ever Feel Like A Lab Rat?!
Post by Karla on May 2^nd, 2004, 6:08pm

Yes I can relate. I have felt like a lab rat at the drs mercy for many years. Then I got educated and started calling the shots. So I guess I was my own lab rat. lol. Hope your feeling better soon.

Title: Re: Ever Feel Like A Lab Rat?!
Post by mynm156 on May 2^nd, 2004, 6:37pm

Thanks Karla!

I too have started to call the shots with my Doctors It is still frustrating. If a Neuro could experence just a Min of our pain (NOT THAT I WISH FOR ANYONE TOO) then maybe they would be better at listening.

Take care

MYNM156

Title: Re: Ever Feel Like A Lab Rat?!
Post by Kevin_M on May 2^nd, 2004, 7:51pm

on 05/02/04 at 17:25:44, mynm156 wrote:

Some even when I tell them (I HAVE TRIED THAT DRUG) Will say "lets try it again just with a HIGHER or LOWER dose!" >:(

I have had no success in finding a preventative treatment.

Well a doctor can't just do nothing and say "I can't help." Yes, it can be experimental on what will work for you and definitely higher doses or so may corral some of the CH. Verap was found more effective for some when the dosage was upped, as much as 900mg a day for a time if your vitals come out ok. Then it seems lately some docs will mix it with topomax when each is ramped up in the right intervals. Lithium and verap is effective for some, but these combinations took some time to find for many who finally got there.
I would not stop seeking an effective prevent for yourself, simply aborting can take much of your life's quality from you. The CH can rip some intolerable marks attacking your sanity without prevents. Keep trying, looking. The CH MADE me look harder when the prevents I was using were ineffective. Things change.

Kevin M

Title: Re: Ever Feel Like A Lab Rat?!
Post by wsnyder on May 2^nd, 2004, 7:56pm

I found that the words "I need" help me a lot. I use them whenever I am telling the doctors about what my needs are regardless of whether I think they are on the same page or not. I also let them know, non-verbally preferably, that when I am in their office that they are working for me, they are being paid by me or my representative, and thusly are my employee for those few minutes. I never ask for anything unreasonable and am up front about that. If they balk at this I thank them, tell them that I need nothing from them, and that I am ready to move on to someone else who is willing to work with me to relieve my pain. I am always dead serious so they know there is no reason to be suspicious of my intentions. Besides, I only asking for prevents, abortives, and O2 which are hardly anything that would send up any flags.

Bill

Title: Re: Ever Feel Like A Lab Rat?!
Post by Samantha_Smith on May 2^nd, 2004, 8:30pm

Hello MYNM156. I hear your frustration.

Once I came to term with the fact that:
1.) this disorder is chronic (episodic for most) and for many its a lifelong battle (remission is possible though)
2.) there's really no "magic" bullet cure
3.) I will most likely experience pain in some form every single day of my life (or episodically for most)
4.) there really few medications that are truly side-effect free
5.) I will most likely have to shape just about every aspect of my life around CH
6.) the meds I'm on now might lose their effectiveness and I'll have to start over again
7.) it takes time to find out what gives me the highest quality of life
8.) Plus (the good news) is that new meds and procedures are hitting the market all the time--there might be new possibilities for me to try

-----when all of those facts hit me in the face about 2 years after being diagnosed with CH then I really started to accept what doctors can and (cannot do) for me and what medications can and (cannot do) for me.

I know that it sucks to feel like a lab rat because I was one of those for many years but like Karla said then "I got educated and started calling the shots." After years of struggling I came to terms with how incredibly limited "modern medicine" really is. Once I lowered my expectations of doctors, scans, tests, and meds then a huge weight was lifted off of my heart. Don't get me wrong--I'm NOT saying that you should settled for second rate neuros or crappy, ineffective, expensive meds. I'm just saying that once I re-adjusted my expectation of what they MIGHT be able to do for me then I didn't set myself up for disappoint all the time. Geeez...I'm not quite sure what else to say but those are my words of wisdom to you MYNM 156.

Bill has a GREAT point too---those doctors work for you! I've fired a few neuro's in my time. LOL.

Hang in there. I'm glad that you vented--sometimes that the BEST medication of all!!! PFDAN's Sam

Title: Re: Ever Feel Like A Lab Rat?!
Post by Charlie on May 3^rd, 2004, 1:11am

You're not alone and the thing is, if you come here, it's very likely that you know considerabley more than a large majority of doctors about CH. You need one like like Jonny's. I understand that he listens.

Good luck and try to bring yours some info from here. The worst thing than can happen is nothing.

Charlie

Title: Re: Ever Feel Like A Lab Rat?!
Post by Svenn on May 3^rd, 2004, 4:08am

Think we all can relate to that.

1, until we have the diagnose

2, until they manage to find the right medicine for us

so yess i know we van relate to that

Svenn

Title: Re: Ever Feel Like A Lab Rat?!
Post by OneEyeBlind on May 3^rd, 2004, 6:31am

CH pain management is a hit or miss game. What works today sometimes stops working tomorrow; and what didn't work yesterday sometimes starts working today. I give your doc credit for trying things at different dosages over and over again. At least he/she hasn't given up. If there is something that you think might work after reading through the posts on this board, suggest it to him ......... perhaps together you can find something that works !

Good luck and pain free vibes coming your way !

Title: Re: Ever Feel Like A Lab Rat?!
Post by Gator on May 3^rd, 2004, 2:05pm

Yup, feel just like a lab rat or guinea pig. I have been experimented on by my own gp, a neuro who gave up way too soon and another neuro "headache specialist" all who's search for a preventative has at times cause more pain than it fixed and I have only been doing this for about 6 months. I go back for another attempt on Thursday.

Just hang in there and when it gets to be too much come in here and vent for awhile. Everyone here knows what you are going through 'cause we've either been there or are going through it right along with you.

Gator

Title: Re: Ever Feel Like A Lab Rat?!
Post by jminmilwaukee on May 3^rd, 2004, 4:40pm

Although I know you are all tired of hearing this, I am going to reply anyway.

I too was a lab rat. I then sad "the hell with this" and resigned to using only 02. This was not an acceptable solution.

As a compromise I decided that I would become my own lab rat and skip the guessing game of the doctors all together.

There may be no magic bullet but shrooms did cut my last cycle by about 95% in severity. No "lasting" side effects, very affordable (less than $100.00 total) and not to mention the whole pain free thing.

Being a lab rat with no promising treatments drove me to the dark side of shrooms.

I know everyone has an opinion on this but I thought it was a good thread to rehash my own reasons for finding relief.

And now, back to your regular programming.

jmin

Title: Re: Ever Feel Like A Lab Rat?!
Post by echo on May 3^rd, 2004, 5:09pm

The difference between us and lab rat is the fact that we do not have an organization watching over us to ensure we are not mistreated.

Title: Re: Ever Feel Like A Lab Rat?!
Post by jonny on May 3^rd, 2004, 5:44pm

on 05/03/04 at 17:09:26, echo wrote:

The difference between us and lab rat is the fact that we do not have an organization watching over us to ensure we are not mistreated.

Oh yeah!, says you....Running on this wheel is killing my feet ;;D

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

Title: Re: Ever Feel Like A Lab Rat?!
Post by Lizzie2 on May 3^rd, 2004, 5:49pm

Just in case you thought nobody looked out for the human lab rats...

http://www.jefferson.edu/osa/irb/

This is for all those research projects on humans, that is!

Lizzie

Title: Re: Ever Feel Like A Lab Rat?!
Post by BstnEagles on May 5^th, 2004, 1:01am

I feel like that all the time. It really pisses me off. Alot of times you will have an attack and have to say thats its a migraine or else no one will know what the hell you are talking about. More awarness is definetly needed., UGH!