tolerance levels
 

Wow! I definitely have too much time on my hands.

Weird question but my husband said something to me the other day and it got this brain thinking ...

I told him that I see the neuro again this week and need to discuss putting me on Sinemet, something I've been trying to avoid. A lot of you have intimated, however, that it's pointless to compromise your quality of life and I've also heard from others who have regretted doing so.

I then went on to explain that some have been on Sinemet for 10 and 20 years with "minimal" side effects ... compared to others who have massive side effects. None of us really know why.

My husband said something to the affect of "it depends on your tolerance level".

Now, bare with me ...

There are many people in the world who pop pills at the drop of a hat (or headache). This includes medicine for sinus problems, headaches, constipation, diarrhea difficulties, yeast infections, etc., etc. The list goes on and on.

Then there are others who try to avoid medication and have taken relatively small amounts their entire lives.

I fall into the first category!

My mom died when I was 15 and the one thing that I remember about her is that she (like I) had massive sinus problems. I've popped more antihistamines into my system than I care to admit.

Okay, so this is the big question ...

Do people who have taken a lot of medication have an easier time tolerating Sinemet?

Or, is the opposite true ... if they've popped pills their entire lives, do they actually need MORE Sinemet to be effective.

Okay, and what about those who have taken very little medication in their lives. Does is tend to go right to their bloodstream and upset their normal balance? Do they have more trouble tolerating Sinemet? Or is the opposite true ... the Sinemet helps in smaller doses because they need so very little to get into their system.

I've never seen this topic addressed, but it might make a great dissertation topic! (I get some of the royalties when they become rich and famous). I'd also feed it right back into the system to help find a cure!

Thoughts????

I had always refused to pop pills when I had a headache, pulled muscles, toothache, just about any kind of pain. Even after major surgery I weaned myself off pain pills ASAP.

However, my doctor and I decided to start sinemet right after I was dx. I have had no side effects, good results, slow progression, and I don't regret my early use of sinemet.

Terri;
I ditto Jo Annn's comment. It makes me sad to hear that someone is sacrificing quality of life to the fear of diskinetic side effects. I suggest that you consult with Dr. Jankovic, if he is the Baylor "big dude" you mentioned in another post, and go ahead and make yourself better with the "gold standard."
Robert

Walk to Sinemet and then Walk to DBS!
 

Dear Mama,

To my knowledge, (If I only had a brain,) the only proven oversensitivity to Sinemet is someone with a genetic component. Those with the genetic mutations are far more likely to be affected by the slightest change in their Sinemet dose. DBS surgery can be a life saving measure but people with the gene mutations are more difficult to program.

The only problem with having DBS too early, is once you have it, you can no longer participate in many research studies and you can have no MRI's for any reason. Don't be in too big a hurry to have DBS as you will reduce your options for participating in research or needing an MRI to diagnose something unrelated to your Parkinson's disease.

Vicky

genetics in relation to tolerance levels
 

You guys are the best! And, Vicky, don't worry ... I'm certainly not considering DBS. I'm just now considering Sinemet. My question regarding DBS is more generic. If it's the "cure all" ... why doesn't everyone do it? I remember reading Michael J. Fox's book (a l-o-n-g time ago) and I know that he had DBS but the tremor came back. Maybe I need to research the subject (in all of my spare time!). It's just pure and simple curiosity.

And, yes, Robert, I do see Dr. Jankovic. I think I got moved to the top of the list three years ago when I called, desperate for a dx because my local neuro wouldn't give me one. I wanted ANSWERS! I actually alternate between seeing Dr. Jankovic and Dr. Shaheed (woman, younger, a bit more personality!). I have no idea if Dr. Jankovic is taking new patients or if he would have taken me had the above not transpired.

Vicky, I definitely agree with you about genetic components being a huge part of the picture. But I also believe, separate from that, tolerance levels play a picture as well. I'm sure we all know people who have taken, say, muscle relaxers. One person can take 500 mg. and barely have it affect them, and another can take 100 mg. and is falling asleep at the wheel.

Thanks Robert and Vicky. I can't remember if I told you, but I actually had "business cards" that I made to hand out to people I either knew had a neurological condition or if I suspected that they had one. (I meet more older folks in the grocery store!) I explain that I'm not affiliated with the site at all, have no vested interest, but that it has a wealth of information, with the most caring individuals you'll ever find. It's time to make some new ones!

Have a great week everyone!

Vicky and Terri...
 

Hi Vicky and Terri,
You can have MRI's post DBS as long as the stimulators are switched off completely by medtronic rep, neurologist or a nurse who does the programming. I've had several with no ill effect.
Regarding early rather then later for having DBS I guess it depends on what we or a neurologist would consider early vs late or more severe P.D. but this was (I thought) a good example I heard once.
A potential patient asked a neurosurgeon when it should be done ie now or later and the reply was this.
Practice playing the piano every day and you become very good at playing the piano. Have parkinsons every day for long enough you become very good at it.
MJF for some reason which I can't comprehend hasn't had it done. He had a unilateral pallidotomy a few yrs back with what appears to me when I've seen him interviewed and after reading his book very limited success.
Please any of you reading this who are anti DBS, don't bite my head off!
Regards,
Lee

why anti DBS?
 

Thanks for your input. Two heads are always better than one! I guess there might be anti DBS people here, but I don't know any of them. More importantly why would they be anti DBS?

Again, thanks for your input and for allowing me to think out loud. LOL

A little goes a very long way.
 

I avoided Sinemet for five years, Requip helped well enough alone. Then I added Amantadine, and LOVED the effect for over a year. Then finally I added Sinemet a year ago, and then I stopped Amantadine because it stopped helping.

I've always taken as few meds. as possible. I don't get headaches, so have needed few.

I can't tolerate more than 8.5 mg Requip per day, and if I take more than one and a half Sinemet pill (25/100) per day my symptoms get worse, not better.

I can't decide if my intolerance to greater amounts of medicine is a detriment, or if the small amounts I need to help are an advantage????