I hope someone can help. I have been taking Sinemet for 5 years and the side effects have been difficult to deal with but the latest one is unbearable. And I know no one with this problem. It stops me talking. I either can't talk at all as it feels like my throat is swollen and someone is standing on my wind pipe or I just make agarbled stutter than no one can understand. I tried coming off then for two days and I was able to speak no problem but after two days although I could walk around I had no enegy to do anything. I know PD can cause voice problems but this is the meds. I cant bare not being able to,communicate it it's so isolating.
The medical profession don't seem to know what to suggest as speak therapy no good as i have no voice to do therapy on.
It seems that i am getting more and more side effects and no more benefits. Sinemet causes breathing problems and internal dystonia which goes when i stop taking Sinemet. I also get bad morning facial dystonia from the Sinemet when I wake so I can't talk in the morning anymore prior to tablets and it's the one time I was able to talk and smile freely, Sinemet also has stopped me smiling and give me a mask. As my smile came back when I came off it for the two days.
It's like the Sinemet is causing the problems that is meant to help. I think I am on too much Sinemet as it causes my teeth clenching so bad that it gives me pains in my jaws and side of face and also stops me talking.
I m sorry I am rambling but I'm at my wits end with it and my medical team can't help any more
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Connie18
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When I don't take Sinemet for a couple of days I get my voice back to normal. Nneurlogist is aware of all the none motor sideeffects but he says it is the price i have pay to move. It's just that I am nowgetting more side effects than advantages
It seems like your body is telling you that sinemet is not doing you any good! As sinemet was designed to mask certain symptoms, which does not appear to happen to you, then I would suggest that you stop taking them. We are all different and what works for some does not work for others.
look at my website - reverseparkinsons.net and make contact with me. Maybe I can help you. I don't charge for helping people, but I cannot guarantee that I will be able to help you, but it is worth trying.
I have done your walking regime but I needed more Sinemet after doing it for a couple of weeks I still doit as it is the easiest excercise to do but i don't get your results. I'm caught in a loop now as imtaking a drug my body doesn't proses well and never has. It work but goes through my body really quickly and wears of in an hour. I keep telling my nureologist that this drug is doing me more harm this good and I want to come off it but he says that if i do that in won't be able to walk and will go so slow I won't be able to do anything and will die. Indissgree I may be a little slow but i have got strong legs and am sure that when I conciuously walk i will be able to change my brain which has got used to being helped to walk and need to relearn walking. I admire you very much and has been looking forward to a talk by you last year in the uk but you fell ill before getting on plane are you feeling better nowadays. I am sure your fitness level from the walking aided your recovery. I just have to find a way to come off the 1200mgs Sinemet as I have tried before and has to go back on it. I may go cold turkey as I think my side effects that i am getting everytwo hours are worse than cold turkey for a few days
Hi Connie. When you tried the fast walking, for how many minutes did you start the walking? Did you walk every second day? Dis you walk as fast was you could? For how many months did you walk? If you did not follow the regimen you would not have got the desired results.
Unfortunately, I have had very similar problems, but more milder than yours. I take Sinemet too, but I don't think I can blame the face masking, pins and needles, and sometimes, my talking, on the Sinemet dosage. Teeth clenching and mild facial dystonia that I have, at times, I probably can blame that on Sinemet, as a side effect. I sometimes get painful jaw spasms, that, I suppose, could be a side effect of Sinemet. It's very frustrating to me, too, when my medical team doesn't have any answers for me, either. It makes me feel like a "turkey", so to speak. A lack of empathy and understanding is difficult to deal with, when the symptoms you have are real, very irritating, and you need a solution, someone to help you, and you feel that your medical professional team has let you down. Perhaps a reduction in dosage of Sinemet might help the frustrating symptoms of side effects, but you would have to carefully weigh the pros and cons of doing that, and, of course, discuss that action with your medical professional team, because they should have the final say on what your Sinemet dosage needs to be.
I have the final say on my Sinemet look what I have put up with every 2 hours I can't swallow and my breathing is difficult. I feel like I'm going to die some times and it also effects my thinking I'm confused and can't think straight half the time. It is effecting my mental health as I can't think properly and feel like I'm losing my mind sometimes and when you combine the mental and physical it's getting unbearable. I have written a large piece at the end of thi topic tonight thanking every one for there suggestions but I think this has only renforced my opinion that we can only know what we are going through,.the neurologists do there best but they have no real idea what someone with Parkinson's goes through and if they did i think they would not say things like you have to learn to deal with it somehow. You sound like you haven't been dealt with very well either. Nobody should have to gg through what I'm going through every two hours it's inhuman and the majority of PD patients go through similiar issues and it only gets worse with meds when you throw in the side effects.
I want to see better treatment for us and will fight to get it as long as there is breathe in my body. I hope you find a way around this hideous condition and can have some sort of life. I'm going to bed now to lie in pain for hours until I can get some sleep. I was sleeping quite well until my night time meds did what they always do and stopped working a couple of weeks ago
How did you cope without Sinemet and moving around. Ignore nitro53 he was trying to be clever picking you up on your spelling when we all Know what you meant and it's an easy mistake to make
Can you tell me how you have coped stopping sinenet. I want to but have been warned it is dangerous to just stop it but I want my voice back. Is your voice back to normal now
The BIG and LOUD L Silverman Voice Training program is also helpful. You can learn exercises for your voice as well as exercises to keep you mobile. Your neurologist or movement disorder clinic should be able to tell you if there are any in your area.
Good Morning Connie18, I am a Speech Pathologist working with the Parkinson's community in my city. Please go to this web site parkinsonvoiceproject.org
and find a provider for this type of speech therapy. If you can say AAHH then a therapist has something to work with...trust me. I have seen great improvements with this two-part treatment program. Communication is vital for you. On a personal note, my husband has Parkinson's and if he no longer exercises I hear it in his voice,... softness, need to clear his throat, hoarseness....just another thought. ALl the best in your search.....~Anne
Thanks for your comments. Excercise has no effect on strengthening my voice. I had an appointment with a therapist and i have to wait till December to go on a course with her . But my voice was a lot better when I first saw her and I could say arhhhh. But now the sinenet which,was changed from predominately controlled release in the summer to regular only is so,strong its made my voice worse and i,mo longer have the energy to,do,that and from my first Sinemet of the day now have problems with speaking. Sinemet is causing me worse voice problems and I don't think by December I'll have any voice to play with. I live in virtual silence. It starts with my chest it is very tight and feels like there is a rag down my throats and it hurts when I try and talk. All tablets that help Sinemet last longer in body like entacapone makes my voice even worse so I am limited to what I can take in th way of meds tonhelp use less Sinemet. I take amentadine and i feel that it also effecting my voice but I don't want to come of it yet as it is giving me more energy.
Bingo, Connie18!! I was wondering if you were taking Amantadine and I was going to ask. You gave me the clue in this post/reply. I had the same problems and it went from bad to worse. I was on Sinemet and Amantadine.
After a painful and painstakingly drawn out process of drug elimination ( I am also diabetic, hence other meds are involved too) and with the cooperation of my doctors and the pharmacist, I finally got back to normal after stopping Amantadine.
First, understand that Sinemet is the gold standard and nothing can come close or replace it. It is also the safest. If you stop that without a replacement like John Pepper's protocol, you will suffer. So, don't do it. You cannot also stop it cold turkey because of the danger of NMS or Neuroleptic Malignant Syndrome. You can literally die from the withdrawal effects sometimes.
You should talk to your doctor about stopping Amantadine. I stopped it without tapering down (meaning cold turkey) and improvement showed up in a week. After about two months, I am fine..
Good luck to you and please do let me know how it goes.
This forum is good, but not perfect. I hit upon Amantadine as the likely suspect after reading about another member's similar experience.
My husband has also been taking Sinemet for 5 years and Gets frustrated when his voice gets horse but has never lost it. I concur with one of the comment in that don’t reduce Sinemet on your own! The low voice or loss of voice from what we know is due to Parkinson’s symptoms not necessarily Sinemet. Our doctor had reduced my husbands Sinemet of 6 a day down to 3 on a gradual basis and he then got Capgras Syndrome! It was terrible! He had no idea who I was. Scariest thing ever! All due to Sinemet reduction! Neurologist advised going back 6 pills and things corrected themselves. Capgras Syndrome is when they don’t recognize their main caregiver/spouse. They think you are an imposter and want to kno what happened to their spouse.
I believe neurologists are just a waste of specialty! They can't cure or help PwP, all they do is to prescribe synthetic poisonous medication. You might want to consider natural levodopa and B1 vitamin protocol. I would encourage you to contact Dr. Costantini. Good luck to you!
I agree. They are so narrow in their thinking. My neurologist is one of the leading lights in uk and i chose him after had really mediocre one who would not give me anything but Sinemet. I was really disappointed in his reaction to dr C. I was really excited and thought he would help me look into it but he just called him a quack trying to get money from desperate people,,i tried to tell him that he wasn't charging but he wasn't interested. Ive,given up o conventional meds now. I have been in touch with dr c but inhavent had any joy on b1. But I'm still,trying with it. I need to see him really as im very complicated as I have no tremour and load of non motor symptoms. I have realised that the,neurologists don't really know what to do for us and we are on our own. That's why these forums are so helpful
From what you are saying Connie18, all I can think is that perhaps your body can't tolerate the levodopa/Sinemet. I majored in voice in college, and Parkinson's does affect my voice, because of the weakness of the muscles, from neurodegeneration; however, I don't have the problem you have, where I feel someone is standing on my windpipe, and my throat is swollen. That would seem more like an inflammation, or allergic type reaction to something, perhaps. For sure, you need to be reevaluated by a movement disorders specialist. I would think. Because a neurologist and/or movement disorders specialist is trained and highly qualified in the prescribing of medicines, it would probably be wise to seek his/her advice concerning withdrawing Sinemet dosage, and what other medicines and/or medical procedures would be applicable for you. It is my hope
(continuing) It is my hope that you will find some relief for what you are going through, and that, perhaps, with this forum, you feel that there are those who understand your frustration and support you, emotionally.
Thank you for your kind words . I think I'm allergic to the yellow dye in the Sinemet as it never as severe when i take the pink controlled realiseones
You don’t take the Drs best Magnesium chelated with glycine and lysine do you? I have developed a reaction like you have described with them. I think I may be sensitive to lysine or glycine or something else in them as other magnesium is fine.
No i don't take it but i feel like i am have an allergic reaction to Sinemet as my throat feels it's swollen and l can't breathe or swallow as it feels so thick. I get a but scared that it gets to the point that my throat will close up completely and I'll suffocate
I have had a lot of side effects from Sinemet, also. I couldn't tolerate the high dosage I was prescribed. I have lowered my dosage and this has helped some. I have to take it, though, or I get really stiff. I read something on the Internet about a speech therapy that is supposed to help. When you can speak again, you might try this: practice saying "may-me-my-moe-moo." It was suggested that saying it for 15 minutes a day would help. Instead of continuous repetition, I say it during TV commercials at night. It is too stressful and boring for me to try and do 15 minutes at a time of this exercise.
I have written this on another post so sorry if you have already read it but I thought you may find it useful. My husband has no tremors, his worst symptom is loss of fine motor skills in his hands. Masking has been relieved by b1 and other vitamins I think. Hard to tell what is doing what.
We have just got tests back which were ordered by the natural health doctor. My husband has had faeces test done for parasites and bacteria and yeast and he has no bifidobacterium and almost no lactobacillus which are bacteria common in most people. He also did a sibo test and it flatlined for hydrogen where normal guts' bacteria produce it after drinking the solution.He does have a strange bacteria at very high concentations called corynebacterium amycolatum which apparently is fairly resistent to a lot of antibiotics, and it feeds on mannitol! It is also common in PWP.
He has also had an organic acid test which shows biprodicts of yeast infections and bacteria. Also it has high readings in things that indicate fatty acids aren’t being processed properly, and others which are linked to diabetes and fatty liver though other blood tests etc done by the normal doctor didn’t indicate either of these.
He has also had DNA tests which show he would not process vitamins d, a, folate or b12 properly and that he should avoid all starches including wheat, potatoes and other grains, and dairy amongst other things.
I think his DNA has meant that on his previous diet which was pretty normal and healthier than the average person in New Zealand but included bread , potatoes , quite a bit of dairy, small amounts of sugar, meat and Veges he was susceptible to yeast and bacterial infections, he developed roceacea so the doctor put him on doxycycline which wiped out his good bacteria too. This exacerbated the problem in his DNA with the b vitamins and eventually led to depression as the neurotransmitters weren’t being produced and other strange biprodicts made him feel anxious. Then he was proscribed fluoxetine which made him suicidal (predictable according to his genes as he cannot process it properly) then mirtazapine which made him sleepy and apathetic so he wanted to sleep all day and wouldn’t exercise. Lack of exercise meant he piled on the weight, and was bordering on diabetes and fatty liver, which created oxidative processes damaging neutrons.
I think DNA analysis in his twenties and identifying metabolic process problems from his genes, this could have been predicted, then sticking to the correct diet would have prevented bacteria and yeast overgrowth, borderline obesity and PD.
Now we have to undo the whole mess! Vitamin supplements and mainly vegetable diet has made him lose lots of weight. His fungal toenail that he has had for years seems to be slightly better, the DNA tests say he needs b2 for metabolic processes that may get stuck, and the urine test says he needs b1, b3, b6, d, b5, ala, mg. The naturopath has give him berberine to support liver, allicin from garlic to kill bad bacteria and fungi then probiotics to replenish the missing ones.
It would be really helpful if I could find out which drugs I can't process as I'm very sensitive to most and it has caused me a lot of problems. How can I go about this. I have written a long piece with my concerns about what the side effects of Sinemet are doing to my body
i got dna tests from 23andme and ancestry.com and found a natural therapist who analysed the results with opus23 pro. They produce a report which has food and drug sensitivities and give a list of good foods based on dna.
Hi Connie, I also have terrible dystonia and I have had botox which has done wonders for my legs and arms. I still have it in my feet and face and can't seem to doanything about it. Botox hasn't helped here. I'm persevering.All the best
The doctor's u have been talking are full of BS. I started losing my voice and have had 4 sessions of speech therapy call LSVT Loud and it works very well as long as you keep doing it daily. So, hang in there with some work your voice should come back!
Thx for your encouragement. I have few sessions in Dec. There are two teachers and one said I wasn't able to do LSVT my voice too bad and the other said I could do it so even they can't agree. It doesn't fill you with confidence but you have I can't cope with not talking indefinitely
Sounds like the Sinemet is doing more harm than good. Maybe time to change meds? Do not totally discount speech therapy especially one who has worked with Parkinson's patients. There may be simple exercises you can do to build muscle strength so that you can some return of voice even while on Sinemet. You may also want to consider a deep brain implant as most people get positive results. There are also a number of volume monitors downloadable online which are helpful as once speech is restored, we tend to perceive our voice as being louder than it actually is. Good luck. The Davis Phinney Foundation has a 400 page book (bound) with a wealth of resources called Every Victory Counts. Available for free at dpf.org
I'm not suitable for dbs or gene therapy which they are trailing now according to my neurologist. He said it might effect my mental capasity and walking which is okay mo and my voice may end up,being worse as it,usually effects it see my comments I have just put at end of piece
Sounds like you are on very high doses on short intervals. You should definitely try reducing dosage as a first response in conjunction with your neuro. I had been on 100mg every 4h then switched to 75mg every 3-3.5h to control the dyskinesia and so far so good. Its a balancing act you try to reach equilibrum where pro=con or close enough that you are functional with some quality of life.
I am on far too much Sinemet but If i lessen the amount of leave bigger time between then it dosent work can't move talk or do anything . And my breating is difficult and chest walls and throats are stiff they feel like burning sensation. Also can't see properly and my eyes feel very stiff and blurry. I don't get much dyskinisea and not the normal peak type but get the on/offs type which means that it starts while I'm off and my leg kicks about,till I have kicked in and if I don't kick in all i get only dyskinisea and no on time this can be quite painful as well. You are meant to do the opposite of peak type dyskinisea and give more Sinemet to solve the problem. Today I am having problems with my swallowing and chest is all tight on my good side so i know it isn't Parkinson's but side effects. I have been told it's dangerous to just stop Sinemet but I can't seen another way as i cant take the pain I'm going to go through if I do it over a few weeks. If I do it cold turkey it will just be a few days of hell and I could take my larazapam that im taking at night to relax the muscles when Sinemet has worn off in the night. It stops me getting facial dystonia in night. I could take it in the day for a few days till I have cleared Sinemet from my body and there fore the painful dystonia. I have done it once before I was getting any dystonia from meds and but went back on as i started to get slow but I can cope with now as my symtoms of the Sinemet are so scary the breathing and swallowing diffiulty I get and the pain and the way it effects my speak and I can no longer have a conversation with anyone or smile because of the facial dystonia i can't cope
My neurologist says that i will get so slow I won't be able to walk or do anything for myself. I think he is wrong and i would like to try using pain killers and muscle relaxants and learn how to meditate and try natural remedies. I know I'll be slow and I can accept it and my balance is better when I'm not on Sinemet. I'm going to tell my neurologist and try and make him see i can't cope with what Sinemet is doing to my body and my brain. I know I haven't mentioned the brain before but i can't think properly anymore. I feel,confused and spaced out. I don't think like I used to. I feel drugged up and i want the clear headed again and feel,like me
Thanks everybody for taking time to reply. I will let you know if I able to successfully come off meds
I think if your doctor won't help you reduce your dosage to see if that helps, you might want to switch docs. Or just tell him/her you plan to reduce meds with or without his/her help (hopefully then you will get more support). Please do it gradually. I haven't done this with Sinemet, but I have with anti-depressants. Coming off cold turkey can be hell and in fact life threatening. Gradual reduction may still come with withdrawal symptoms, but they should be bearable. Good luck to you. I'm so sorry for what you're going through.
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There is a Dr. C. among the crowd who is prescribing alternative medicine, too!
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