William
Forum Replies Created
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I have not (to my knowledge) but when I started having balance issues I went to my boss and disclosed my condition. I would occasionally bump into door jambs and such and if I got reported I wanted him to know. One night I was stopped in a drunk driving roadblock and even though I had not been drinking I realized that I probably wouldn’t pass a sobriety field test. I did not have to take one thankfully but I asked my neirologist for a letter which I now keep in my glove compartment. If they would have asked me to take the test I would have asked to skip it and take a breath test. I have not experienced any difficulties driving due to PD thankfully.
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I had to stop Rytary because it caused me to have powerful PVCs. My heart was jumpong out of my chest. I am having trouble regulating my blood pressure recently. I have been on med for bp for years always 120 over 80 but now if I take my meds I’m running 90 over 60 with orthostatic hypotension. Taking bp several times a day and medicate only when high 130 over 90 or higher. Trying a lower daily dose now in an attempt to regulate better. Always something with this damned disease!
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I have been taking C/L for a few years. I started off on IR but soon started with dystonia in my foot (curled toes and cramps) so swiched to ER two tabs per 6 hours. Also tried rasagiline along the way but got serotonin syndrome and stopped. The ER worked fine for awhile but I found the first dose in the morning only lasted about 4 hours and subsequent doses about 5. I started mixing in an IR tab (leftovers!) as a bridge to the next timed ER dose and this worked for awhile but then got the dystonia back. (All of this in consultation with my neurologist). We then tried Rytary which was a Godsend for about 3 months but then of course I got one of the known side effects of irregular heartbeats and stopped.
So long story now in the AM I take an immediate release 25/100 along with 1 ER 25/ 100 as it seems I am depleted in the AM. Two hours later a second ER 25/ 100. Then I time 5 hours from each dose for 1 ER. Seems to be working well to walk the tightrope between tremors and dystonia. I use the alarm clock on my phone to program the doses for the day. If I get tremors or dystonia I’ll adjust the timing a bit as it seems tremor for me is too little CL and dystonia is too much. I’m thankful I have a thoughtful neurologist and I should mention that I am a retired health care professional so he gives me some leeway in adjusting my meds as he says I do it in a “thoughtful way”. This may not be for everyone but it is working for me. Good luck to all.
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Avoiding alcohol helps with the waking up and the need to pee. If I imbibe it is early and lightly (happy hour 3 to 6!). If I overdue it I am up every 2 hours. I try to time my Sinemet for a dose right at bedtime. I find that I tend to wake when the last dose runs out. So that limits me to about 4 hours because a dose only lasts me about 5 hours and it takes me awhile to get to sleep. I find that I use the bathroom because I’m up, not up because I need the bathroom. Thankfully I can usually go back to sleep. Resigned to getting broken stretches but if I can get that first stretch to last 5 or 6 hours it is great. Tend to be up for good around dawn so try to get to bed by 10. Had to stop Rytari which was great for me but unfortunately experienced side effect. Tried melatonin didn’t seem to help. Seems like we all have similar experience. Trying CBD gummies next.