[Sasha]

I would appreciate any ideas anyone has, this is driving me crazy. Here is the situation: I wake up in the morning moving very slowly and asymmetrically, but I can move. I take my morning meds (1 mg Sinemet and .5 mg Mirapex) and things get much better for maybe 3 hours or so - then I take second dose, and immediately my legs lock up and I can't walk - in maybe 15 minutes time. This lasts for about an hour, then I'm better and can move again. But not always. Yesterday, I was off for 2-3 hours and finally took another small dose of meds and then could move again. Had to be carried out of my art class....I recently added Azilect - could that be doing something? I did cut back on the Sinemet recently from 1.5 mg to 1.0 mg 4 times a day.

Add theories anyone has would be great, am at my wits end, trying to get in to see new neuro right now so kind of in between docs - and I think this board knows a lot more about living with Parkinson's than any doc anyway! Thanks a lot for ANY ideas.

Sasha

[reverett123]

Sasha-
You say that you go three hours. What happens if you take your next dose at *two* hours? If you avoid the crash, that would seem to say that that second round isn't getting into your system as soon as needed.
-Rick

Originally Posted by Sasha

I would appreciate any ideas anyone has, this is driving me crazy. Here is the situation: I wake up in the morning moving very slowly and asymmetrically, but I can move. I take my morning meds (1 mg Sinemet and .5 mg Mirapex) and things get much better for maybe 3 hours or so - then I take second dose, and immediately my legs lock up and I can't walk - in maybe 15 minutes time. This lasts for about an hour, then I'm better and can move again. But not always. Yesterday, I was off for 2-3 hours and finally took another small dose of meds and then could move again. Had to be carried out of my art class....I recently added Azilect - could that be doing something? I did cut back on the Sinemet recently from 1.5 mg to 1.0 mg 4 times a day.

Add theories anyone has would be great, am at my wits end, trying to get in to see new neuro right now so kind of in between docs - and I think this board knows a lot more about living with Parkinson's than any doc anyway! Thanks a lot for ANY ideas.

Sasha

[Conductor71]

Originally Posted by reverett123

Sasha-
You say that you go three hours. What happens if you take your next dose at *two* hours? If you avoid the crash, that would seem to say that that second round isn't getting into your system as soon as needed.
-Rick

Sasha,

I must second Rick's advice to stay ahead of they symptom curve. I find that it's much easier to overlap a dose by a half hour than to go "off" entirely. I've also learned that a Mirapex and Sinemet end of dose happening at the same time does not make for a positive experience.

Is this reaction a new one since you added the Azilect? I have some perspective on the mix of drugs you are taking. In my experience, I think that the odd, intense reaction your body is having resembles a withdrawal reaction to Mirapex. Here is what I've noticed after a year of recent monotherapy with Sinemet followed by adding Azilect and Mirapex to the mix.

-When using Sinemet alone for a year, I experienced no harsh wearing off sensation but rather had an annoying 'buzz' or pins and needles feeling in my hands. That was it.

- Upon adding Azilect and Mirapex to the mix. I immediately 'enjoyed' a much more intense, troubling wearing off experience. I ended up with a disabling dizziness that forced me to lie down for an hour at a time and blood pressure spikes.

- I stopped Azilect due to an intense joint pain in my feet and hands mainly in the mornings. It felt as though my hands and feet were curled up in the same position for six hours. My joints felt filled with a slurry of cement or something. The joint pain stopped after I stopped the Azilect but returned in a milder form a few weeks later and is now a constant companion in the monrings.

-I continue to take Mirapex (at higher doses than I'd like) and Sinemet. I can isolate the disabling dizzy sensation (like some invisible strong hand is pushing my head forward from behind) to Mirapex withdrawal. I isolated for a couple days...when I got the wear off effect, I took half a Sinemet and 'nothing'. I took a full dose of Mirapex only and all was right with the world within a few moments (I must add that I now get stiff gait as a wear off symptom- one that I didn't have on Sinemet alone).

I think the dizzy feeling and general sense of unreality I feel is my body's way of jonesing for a dose of Mirapex. I'm sure most doctors would scoff at this, but where are the longitudinal studies on using rasagaline and agonists- specifically where are the studies showing how we feel like crap from having to take thme? There is no medical literature on long term effects of using these drugs.

Has anyone on a different combo like Comtan and Sinemet experienced this weird end of dose reaction? What about monotherapy with Rasagaline and Mirapex? Requip? It would be interesting to hear if others experience this.

[Sasha]

Thank you both so much. I'm kind of digesting this and wondering what is causing what. The odd thing is, I don't get the intense off period until I take another dose - which I was taking earlier and earlier to try and stay ahead of the wearing off thing, but with no luck. Maybe there is some factor with adding the Azilect that makes things more complicated.es, Sinemet did seem to be a smoother off and on experience...Right now, I need to pour some caffeinated tea into my synapses and see if I can process this.

I thank you so much for your input. It's very scary to take the meds that are supposed to help, only to end up frozen 15 minutes later!

[lou_lou]

this is a balancing act - of too much or too little,
sometimes we can not distinguish between too much
as the Levadopa/carbidopa can cause the bad side effects as well,
so it is easily confusing, adjust the meds as Rick suggested,
however do you consume any food at all - during this time,
as sometimes it helps to eat crackers, and have some jasmine tea,
----
I feel there needs to be a nutrition question...
dear sasha what do you eat?
peace to your ♥
tena
ps -
mirapex can cause low blood pressure, I did very extremely poorly on mirapex...

[Sasha]

Tena -

Thanks for the reply. It is very confusing and I have considered that it may be too much medication for that time when doses overlap....I'm making a little chart to keep track of what happens when and am going to try different things and see how I react. Food may certainly be important. What do you recommend that I eat/not eat? I believe food does affect the chemistry of the body in far more ways that we give it credit for.

Thanks.

Sasha