What's going on?

[Nettiepie]

I need help desperately!

For the last five or six weeks, I have been feeling awful. Very dizzy, faint, and lite headed. Lately, I am nauseous too ! The only thing that makes me feel better is lying down, but that drives me nuts! It started when my Neurologist changed the dosage of my Parkinsins drugs -loweredRopinerole 24 mg daily to 18 mg daily. But then she upped my Sinamet from three tablets daily (25/100) to 6. We did that slowly over a couple of weeks. I started feeling like I was moving, weaving, dancing, bobbing up and down, whatever ,constantly, but I wasn't physically. I just felt like I was. It really frightened me, so I slowly cut back On my Sinamet to three tablets again. Problem is that bobbing feeling has stayed with me, and it's horrible! Has anyone out there had this?

I can't handle it!

Thank you friends

Nettiepie

[wifeofparky]

are you drinking enough? Dehydration can cause some of these symptoms. Also have your blood pressure checked. Low BP can also be a cause.

[soup]

What has your consultant said about it?

[Nettiepie in reply to soup]

They think it's orthostatic hypotension which it might be but I can't figure out why am bobbing up and down all the time makes me so sick

[alicekeff]

try to see you doctor it could be anything.

[michaela13]

Blood pressure? Low?

[wifeofparky]

taking sinemet with food is not recommended. It completes with the protein receptors for absorption and you end up taking more to get the same results. Best to take a lower dose on an empty stomach for best and more reliable results

[Schells in reply to wifeofparky]

Is it one hour before and two after food? Thanks

[wifeofparky in reply to Schells]

yes for sinemet

[Nettiepie in reply to wifeofparky]

Thats good to know thank you

[jupiterjane]

Call or go see your Dr. as soon as possible. What you are experiencing is not normal and living your life laying down cannot be fun. Your Dr. is your ally, he's there to help. Hope you feel better soon!

[Nettiepie in reply to jupiterjane]

Thank you I keep in contact with her I appreciate your input

[christyd65]

I had the exact same problem when I added Sinemet to my 24mg ropinerole. It was horrible! ! The only way I could describe it was I constantly felt like I was car sick or hung over (without the fun that goes with it ) and eventually had to stop sinemet completely. It took a good week or so for all the "moving" feelings to subside. Unfortunately the tremor got worse but at least I'm not in bed all the time. Stay persistent with your Dr. it is all trial and error to see what works for you and what yoi can tolerate.

[Nettiepie in reply to christyd65]

I'm glad To find someone with the same problem as I have had. I think I might have to do not go off of my sinamethi My tremor is not that bad . didyou have to do it slowly or cold turkey?

[soup]

Never go cold turkey. There is a withdrawal problem called malignant neuroleptic syndrome when stopping levodopa.

If you are going to reduce your levodopa do it slowly and with the knowledge of your doctor. You never know, you might just find that a slightly lower dose doesthe trick.

[christyd65]

Absolutely don't go cold turkey and certainly make sure your doctor guides you through it. I happened to be on the highest dose of ropinerole and had just started on the lowest dose of sinemet so it was a cold turkey situation for me. Just keep talking with your doctor and insist they listen to your concerns. Good luck!

[Nettiepie in reply to christyd65]

Thank you Christie I am sure struggling here with this. I used to be on the highest dose of Ropinerole but I've whittled it down to half so 12 mg..and I'm taking three Sinamet s day still. I just feel so Terrible

I talked to my doc yesterday and We've got a plan

Thanks for your concern."" How long have you had PD....?

[christyd65 in reply to Nettiepie]

I've had some symptoms for a few years but finally diagnosed in march of this yr. Pretty much still in shock stage and burying myself in work to avoid it but doesn't really work...it's always competing for my attention

[Nettiepie in reply to christyd65]

Good to have a comrade, thanks for your encouraging words . I still have not been dx yet, and they are still running tests. This never seems to end. All my tests come back normal.

After two years and I'm tired and still frightened. ALL MY SYMPTOMS Seem to be moving way too fast for PD