My PD symptoms have greatly decreased. It is bizarre. (Yes I have PD , was diagnosed twice, father has PD) I used to have a visible tremor in my fingers that would come out when exhausted or stressed. It has disappeared as of late. My “weird leg” as I call it, PD feeling of disconnected weaker leg is reduced. Dexterity improved. Etc etc
But, as my PD decreased I developed RLS. It’s like a seesaw; PD down and RLS up.
Im trying to determine some potential causes of this.
Im looking in to methylation (under or over) thinking that could be a cause?
And Histamine? High histamine is observed in PD. Ambroxol is an antihistamine. I take Ambroxol. Antihistamines can worsen RLS. But not all and I don’t know why not all.
RLS and PD are opposites in some ways like iron metabolism.
My puzzle: why do I have RLS now and simultaneously less PD symptoms?
My Pd improved so much I considered stopping Azilect. Doctor said no need to wean. Just stop. I did. I was fine for about 10 days and I was elated! Then it HIT. Internal tremors that felt like what I believe seizures are like. My head felt like it was bouncing on the pillow. My organs were shaking. And I suddenly had EXTREME RLS.
I’m back on Azilect. Internal tremors subdued but and RLS reduced but very present.
What the heck is going on?
Im getting a mineral hair test in a couple weeks.
Methylation? Histamine?
(If your response is, maybe you do not have PD; just don’t. Im not debating that further.)
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So did the RLS start before you stopped the Azilect? If not, it sounds like stopping Azilect was the trigger for the worse RLS. Maybe it will calm back down over time.
Congratulations, that is very exciting news to have your symptoms reverse to almost gone with the concomitant use of Ambroxol ! Thank you for sharing your results and please keep us updated on your progress!
You don't think the Azilect which is a recognised monotherapy for early stage PD , and often completely relieves all symptoms at that stage might have had anything to do with the symptoms reverse?
Or for that matter the cold turkey Azilect halt be responsible for the adverse reaction?
Definitely the "cure" was due to Ambroxol - we can isolate that because we are looking for it to be true?
”we” meaning me obviously. Responding to my post but “not to me” to say that my improvement is not improvement but just Azilect masking symptoms. 🙄 You consistently insult and degrade and contribute but avoid answering questions and certainly will not acknowledge not knowing.
Question you will ignore but it’s based on your question (to Bolt and Art 😂) :
then BP why do I have fewer symptoms now, whilst on Azilect than when I had been on Azilect for a few months, same dose, which was approx 2 years ago? Repeat: Medicated with Azilect 2 years ago I had more symptoms than when medicated with Azilect now. Is that just the Azilect magically getting more potent? Seriously, how or why could this be?
I don’t think the perceived or real improvements are due to the Ambroxol and I don’t know what it is. What I do know for sure is that you don’t know either but have once again tried to demean me. Bravo with your consistency in aiming low BP.
Actually I meant the "we" I addressed - Bolt and Dave, who both appeared to draw that conclusion, but you have demonstrated on other threads that it is always about you 😉
well it is my post and I’m the one taking Ambroxol and none of you are so…
How about answer my question as I stated above? You won’t bc you can’t. But you will respond with a smear of 💩 BP.
Enjoy your beer and pizza. That is really inspiring and will definitely improve your long term outcome. 👍🏻
I’m finding reciprocating your years of hostility towards me fun. Long overdue. I used to try and just stay on the high road but down here in the muck with you ….well I can see why you do it. 😂.
I don't know what is working or not working, little apple would be better able to answer that question. I am responding based on what L_a said , but obviously I was not clear on that because based on what was said, I first thought the Ambroxol was the reason for the improvement in PD symptoms, but it turns out that it likely was not due to Ambroxol and that is why I asked, why not stop Ambroxol if you feel it is causing the RLS and not really helping PD symptoms.
Yes. It's a confused picture for sure. A good physician will get a comprehensive case history and be able to make direct physical observation. For example, how do you factor in the bydureon usage to any assessment of LA's situation. Or her extreme dietary choices? And doubtless a long list of supplements? But given some of LA's other recent posts where she is anxious and confused about her worsening health situation, I wouldn't rush to the conclusion that anything is working. AND cold turkey stopping Azilect could easily account for the sort of problems she mentions.
Parkinson's disease is a tough disease made even more difficult by the large variance in response to different treatments for each individual. What works very well for one person may cause serious side effects and be intolerable in another person. It is really nice when you are able to find a combination that is beneficial for you, but that road can have a lot of twists and turns along the way and even if you find that combination now, will it still be as effective down the road? It can be an exercise in frustration for many. Very slow advancements in the science and research add to the frustration. I don't want to add to that frustration.
I wasn't aware that you're still on Ambroxol. Although the mechanism of action differs, a bronchodilator theophylline which treats respiratory conditions by relaxing the airways and affects blood vessels is associated with worsening RLS. Both treat respiratory conditions and could affect blood flow.
The first link is massively long and covers a myriad of causes of sleep issues, cancer etc. I’m assuming I missed the part on RLS and respiratory symptoms. You’ve always assumed I will understand more than I do which has motivated me to strive to be able to understand. It’s been very good for me but then there are times when I’m just at a loss, like now.
ctrl-f, type "theophylline," enter. Search the text for the drug related to sleep disturbance.
Also, high histamine level is often associated with low methylation level, which is more prevalent in Parkinsons, but not always. See the below thread to see the relevant past discussion.
“The change in thyroid hormone levels in COPD might play a role in development of RLS. The relationship between thyroid hormone and RLS was shown by “
On the RLS forum I posted about a link between subclinical under active thyroid and RLS prevalence.
“The dopamine pathway is known to influence RLS symptoms and there is evidence showing that dopamine depresses the thyroid axis. Pereira et al proposed that there is a similarity between the daily circadian rhythm of TSH and the rhythms of RLS. Deviations in the thyroid axis might lead to RLS as well as other sleep disorders (Citation18). “
bronchodilator theophylline which treats respiratory conditions by relaxing the airways and affects blood vessels is associated with worsening RLS. Both treat respiratory conditions and could affect blood flow.
Affect on blood vessels…how? I need to learn in what way? Maybe things that increase blood flow like Vinpocetine could contribute.
You're looking at myriad downstream effects. I would try to look for the root cause, such as copper dysfunction also being related to thyroid problems and many other issues including iron metabolism and dopamine production (ie/ dopamine-beta-hydroxylase).
The simplest thing for RLS that I can think of is a light supplementation of magnesium and b complex. This helps brain cells more orderly manage the flow of dopamine given the dopamine ups and downs that occur with the use of Ldopa.
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