Switching on

[skinnibean]

Does anyone else have sort of convulsion like siezures when the meds are beginning to kick in ? Its very scary and unpleasant.

[Juliegrace]

How long have you been taking meds? I sometimes have a severe jaw tremor enroute to my on phase and the same with transitioning to my off phase.

[skinnibean in reply to Juliegrace]

almost 10 years now, I take 100mgs Sinamet IR 4 or 5 times a day,

[park_bear]

You are probably referring to dyskinesia. What Parkinson's meds are you taking, how much and how often?

[lenamm]

I did - it is a form of biphasic dyskinesia. I would get it for two hours when my meds were going up and down and it came with severe anxiety - pure hell! I got it at any dose of medication. If I took ER it was a little better than IR. Post ablation surgery it is gone. And I developed it only two years into meds with the most I ever took being 450mg a day.

[skinnibean]

I'm almost 10 years since diagnosis, and take Sinamet, mostly 450mg per day, the siezures, or whatever they are, are especially severe if Ive had any protein, even a tiny bit, I dread the meds switching on, but I cannot go without, my tremors are very severe now. Pure hell.

[park_bear in reply to skinnibean]

The default version of Sinemet is the immediate release, IR, version which yields very uneven levels of levodopa over time - the blood plasma level after 4 hours is less than one quarter of the peak value. Sinemet CR or carbidopa/levodopa ER results in steadier blood plasma levels of levodopa. I too experienced dyskinesia with the IR version. Since switching to carbidopa levodopa ER that problem has not recurred.

[royal57]

My wife had a similar problem. From what I found it's diphasic dyskinesia ( I've seen it called both biphasic and/or diphasic) where you shake as the medicine turns on and also shake when the medicine turns off. She would shake about 15 minutes after taking her first dose of the day for about 30+ minutes. I thought maybe it was the buildup of carbidopa/levodopa in her blood stream so we decided to take 2 pills on her first dose rather than 1 to build it up faster. That seemed to reduce the time she would shake from 30+ minutes to about 15 minutes. She had pretty bad shaking spells.

Then the 2nd part of this is after her last dose of the day as her medicine was wearing off she again experiences a good 60-90 minutes of dyskinesia discomfort. We've just lived with it. She just had DBS done and it gets turned on in 9 days!! Since her DBS procedures the symptoms of the diphasic dyskinesia she experiences have changed a little but they are still there. ( The only medicine she takes is 25/100 carbidopa/levodopa)

[skinnibean in reply to royal57]

Thank you for taking the time to reply and help me make some sense of what is happening to me, I envy your wife having the option of DBS, its rarely available in my country, New Zealand, and as I'm 71 I have no chance. At least my dyskinesia is only when the meds are taking effect and not when they are wearing off as well. I recently had a nasty fall, (my first one) and hit my head hard, my PD has got worse as a result. Struggling to cope.

[mgregor6 in reply to skinnibean]

Oh, you poor dear! My heart and prayers go out to you!

[Parkie- in reply to skinnibean]

Hello Skinnibean

Did you actually ask your neurologist about DBS? This study found no problem before 75 years old:

pubmed.ncbi.nlm.nih.gov/251...

"Older patients with PD (>75 years) who were selected to undergo DBS surgery showed a similar 90-day complication risk (including postoperative hemorrhage or infection) compared with younger counterparts. Our findings suggest that age alone should not be a primary exclusion factor for determining candidacy for DBS. Instead, a clear focus on patients with medication-refractory and difficult to control on-off fluctuations with preserved cognition..."

It might be worth insisting a bit...

There is also FUS Focused Ultrasound Surgery. MBAnerdson, HU member, had it done at age 73. Might be worth looking into.

[sprildiver]

I have this when I wake in the mornings. That half awake time. As you say, very scary. They seem, to a lesser extent, have started to do this if I stay in the same position for too long.

[pmmargo in reply to sprildiver]

I also have full body shaking first thing in the morning. mercifully It is only for a short time probably less than a minute. Do you know why that happens?

[skinnibean]

It sometimes feels to me like my body has been taken over by an alien.

[Spuddy8]

Yes, I call it ‘twerking’. My right leg stamps like a horse that can count by stamping on the floor and my right arm wants to create a lassoing action... my glute kicks out too... like some twerking cowboy!! Amantadine is supposed to help...

[Moondaughter]

My primary med is mucuna in ice green tea (sip throughout the day) + 1 10/100 sinemet pill. Yeah....it feels like I'm a rocket in the initial getting ready to launch phase . I'm drinking celery juice and also take magnesium threonate in a liposome carrier (which has helped at night a LOT --but it has to be the one in the liposome carrier) - I wonder if the "microsalts" in the celery juice have a synergistic effect on t he magnesium) have been in this game for a very long time (resting tremor and cogwheel rigidity, bradykinesia etc etc etc for 26 years -meds for 10) . I feel tension in my sacrum - sometimes I get relief I lay on a hard floor on my belly or do some yoga stretches for my back or move around...trying not to get totally focused on resisting t he convulsing . It is very difficult to focus on my breathing but I try in some way to take an observer point of view when this happens. Just do the best that you can. I also am observing astrological transits that involve Mars, Pluto, Mercury, and Jupiter- when Mercury is cazimi to the Sun my day goes well.... Kind Regards Moondaughter

[Moondaughter]

If the biphasic dyskinesia is caused by taking med why do I experience convulsing at night yet my last dose of med is at 6 PM ?