Hello all! Curious to know if any of you out there have any experience with or knowledge of any particular non-motor symptom medication?
After recently having a colonoscopy which came back negative and an endoscope that came back negative with a little bit of reflux, my gastroenterologist has surmised as I do that my tremors are non-motor based obviously in my gut but also from my smooth muscle and other parts of my small and large intestine. The reason why my gastroenterologist and I believe that is it seems as though when my gastric system or Vagus nerve or anything connected to the digestive system is reactive, the tremors get worse. Well I am more calm and less reactive in terms of my nervous system the tremors seemingly go away or subside much more. I have an appointment in March with my Neuro office and they are aware of these findings.
Any feedback would be most appreciated!
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MissRita
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Right I know that the tremor is a motor symptom but my thought is if it’s coming from the Gastro intestinal track which is a non-motor isn’t there a correlation? I think for me it’s really based more around the enteric nervous system all together.
I understand that the G.I. tract events can trigger or aggravate your tremors, but the nerves that control your muscles and that can cause tremor come from the brain.
In any event this involves muscles moving which by definition is a motor symptom.
I realize that but gastrointestinal is under non-motor symptom. So I guess my point is when my gastrointestinal tract is symptomatic or having issues than the tremors get far far worse. To me there is a definite connection because when my Gastro intestinal track is not or is digesting food or having gas or whatever, then the tremors are virtually nonexistent. Mind you when I’m hungry I tremor, when I have anything that disrupts the digestive tract I tremor. It’s a conundrum for sure.
Yeah that’s pretty funny that you mention that because I go through the actual same thing. When I empty it I get far more tremors and then they subside for quite some time and then I feel better throughout the day and don’t eat nearly as much if at all. I do know that as soon as I do eat the tremors come back. So we’re sort of the same.
Lmaoooo I know I have to laugh too but it just seems so odd that a non-motor issue can affect a motor issue doesn’t? I mean I can’t tell you how frustrating this is because I don’t understand it! Lol
Well it would be nice if I had something to control the non-motor issues that are affecting my gastric issues. Such a conundrum!
did you try cat's claw yet for tremor?
You could also try Avena Sativa (which I take daily, but may take time to benefit you) & Valerian Root (sometimes for sleep). Valerian works extraordinarily well to calm the nervous system, but will also make you sleepy.
Funny that you ask that. I just bought cats claw, the powdered version. I’m not sure how to take it. Sleep for me has never been an issue. I could sleep my life away. But what I’m finding is either I am taking too much L/C or my body might just be resisting it. I have read that many patients don’t always react to L/C very well. For instance I took two tabs of 25/100 this morning and I took it about 2 1/2 to 3 hours ago and I’m starting to sweat already and the tremor hasn’t fully gone away and it seems to be slowly coming back. Mind you I’ve had this tremor since 2015 and was formally diagnosed in 2017 I get anxious about this because I keep thinking maybe it’s progressing faster then I know. I just recently was able to secure an appointment at Strong Memorial in Rochester New York in May so that should be interesting to see what they have to say. I see a doctor where I live now in Syracuse New York and although they are good they don’t seem to be very well versed in the current knowledge of PD and seem to be stuck in the textbook mindset of what PD is and how to treat it. I will see them next Tuesday and that should be an interesting visit.
Just over one year now on Ambroxol and it's still working very well to keep me clear of brain fog, reduce the number & severity of my freezing episodes, as well as some small motor improvements (typing, facial gestures for example), & reduced meds (no more ropinirole for me). Starting now to wonder if some larger motor movements aren't benefiting from it now too, like getting out of our deep couch (have noticed has gotten a lot easier for me). So all in all, very happy with how its working for me.
I am trying very hard to help my husband. See your posts on Ambroxol and read the article you had linked. Don't understand everything, but can you tell me what brand I should try? How much do I give him initially and so on? All his problems started with the doctor changing his anti depressant. Now he has episodes of severe dyskinesia, during the episodes he is not coherent, I cannot get him to listen to me, has falls, etc. It certainly gets better if he calms down, but it is difficult for me to get him to calm down. When the episode passes, he gets extremely tired. HELP!
Very sorry it is so hard for both of you, PD is indeed a very, very difficult disease for a spouse to live with, let alone help with (as my wife will also attest). It sounds like he has different issues to address. Dyskinesia is usually caused by long terms use of (C/L) carbidopa levodopa (apdaparkinson.org/what-is-p..., the primary treatment option for PD symptoms), and his certainly sounds severe if it's badly impacting his speech. I am going to assume then that he has been struggling with PD for a number of years (> 4), and is now on a fairly high dose of C/L throughout the day (?). In cases of severe dyskinesia they sometimes recommend deep brain stimulation, has you doctor talked to you about that option? (webmd.com/parkinsons-diseas.... There are some herbs I use to help me sleep and manage my anxiety & depression, but if his dyskinesia is as severe as you describe, I'm not sure they will be the best answer for him at this stage. If you want to try them however let me know and I will forward a few names for you to check out (including one that has been found in research to help with dyskinesia) and speak with his doctor about them. Does he exercise regularly? (recommend the LSVT Big program youtube.com/watch?v=fpTqcWs..., also boxing is really, really good, and helps with balance and falling (I have a pole mounted floor bag). Does he take any any multi vitamin or energy supplements to combat his fatigue?
As for Ambroxol, I use it primarily to keep me clear headed (remove the PD brain fog, which it does very well for me), and slow the progression of my PD (perhaps more than that if the current trial for PD dementia suggests that - I believe it should be published next year sometime), as well as manage my left shoulder nerve pain from PD. The 1st trial (link below), had an escalating dose protocol which started out very low to test for any rare side effects and to adjust to it (I had mild stomach upset in the 1st week or so, but nothing since then to speak of) as follows: "the 186-day exposure period comprised 28 days of dose escalation, with each dose administered 3 times per day as follows: 60 mg (days 1-7), 120 mg (days 8-14), 180 mg (days 15-21), and 300 mg (days 22-28). This exposure period was followed by 158 days of administration of ambroxol at 1.26 g per day (420 mg 3 times per day)." I stopped at 300mg 2x per day, but the current trial may indicate that an even higher 525mg 2x day dose has better results, particularly in more advanced PD dementia cases, there is really no way for us to know just how well it works and how much to take for PD until it's published. As far as a brand, you can find one option on Amazon, but there are a few other if you search on it, just make sure it is from a reputable manufacturer with no reported serious QC issues, it has shipping speed that works for you and an easy return policy if it arrives damaged. If he is planning to try it, he should speak with his doctor about it (mine was fine with it in my case).
Hope that answers some of your questions, and truly hope he finds some things that help.
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