My husband's movement specialist has said that none of the medications for Parkinson's work for tremor. Is this true, and if so, why has nothing been developed to ease this problem?
Treatments for Tremor: My husband's... - Cure Parkinson's
Treatments for Tremor
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merne
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Interesting. Medication has almost completely removed my tremor although it returns when it’s about 45 minutes before the next dose.
Really, perhaps he hasn't been given very good advice. What medication do you use?
Sinemet, the oldest PD medication (carbidopa/levedopa). Can you get a second opinion?
It was suggested a while ago that he try another med but the one suggested could cause obsessive behaviour so he decided not to bother. His tremor is worse now so it is probably worth trying something other than just Azilect.
C/l does not cause obsessive behavior. He made a good decision to decline any medication that can cause obsessive behaviors; they are in a class called dopamine agonists.
C/L is inexpensive in immediate release form. Does the doctor want to push newer, expensive medications? Mine did; suggested a new, pricey dopamine agonist but I refused. Can you find out why c/l brand name Sinemet wasn’t suggested.
Stay away from the dopamine agonists....Pramipexole/Mirapex, just to name one.
I've heard this before and have never understood how they could say that. An hour ago, before my latest Rytary pill, my tremor was fairly strong. Now it's gone. I suppose that eventually, the meds will stop working so well, but for now, they work just fine. I also take vitamin B1 in a high dose (search for HDT on this forum), and that helps as well.
I'll look into that, thanks
My HWP is on Azilect and Rytary. Tremors come back close to next dosing.
There is one other possibility. If hubby's been taking large doses and/or a long time, the 'tremor' his MS refers to might actually be dyskinesia caused by the meds. If this is the case, then the only way I have heard of to deal with it is to reduce the meds, but then he might experience the PD-caused tremor (which might be preferable). Unfortunately we all face that possibility.
The only med he is on for PD is Azilect. He’s been on it for about 4 years now.
Is his tremor light and fluttery like a butterfly most of the time (but can get more energetic if stressed)? Or is it more like a punch or jab most of the time? If fluttery, it's a PD tremor (not enough muscle stabilization to keep it still). If more muscle is involved (jabbing or larger movements) it's probably due to too much med. Contrary to popular belief, dopamine agonists like Azilect, can - over time - cause the same dyskinesia as C/L meds.
It's more like a flapping, which becomes bigger when he's stressed.
When he's not stressed is the flapping usually light with little strength? Or is there some strength behind it? If someone else were to try to hold his arm still, what would happen? In other words, would it be more like arm-wrestling or would someone be able to hold it still?
From the book Once Upon a Pill: "Eventually, after this patient reduced his medication slowly and carefully over more than a year, the violent ticcing stopped and his original tremor – a small, fluttering, weak movement – reappeared, amazing him and his family. For the first time, the family members were willing to admit that possibly the violent ticcing was a drug-related twitching – not tremor, a normal symptom of Parkinson’s disease. The violent ticcing showed no signs of slowing until he got down to 300 mg/day (from his high of 1000 mg/day) and stayed at this lowered level for three months."
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C/L resolves my tremor almost completely. I have heard that it doesn’t help tremor for some people, though.
He isn’t on that yet, his specialist has said that his PD is mild and progressing slowly but the tremor in his arms is causing pain so it’s maybe time to try something new.
CL is sinemet (generic). He isn’t on it yet? There’s still some controversy, but many neurologists nowadays don’t think waiting to start this is necessary. Especially if he has pain! And his symptoms bother him. I agree he should consult with a different neurologist, preferably a movement disorders specialist.
Try Kapikachu ( India raw Mucuna powder ),. This will control tremor as long as it is working. It has to be taken with normal drinking wster. Try initially with 1 TBS in 200 ml.water . It has to be taken in empty stomach , it will start working within 15 to 20 mins, tremor will start coming down, within 30 - 45 mins, it will completely stop tremor and other PD Symptoms, there after he can take food. It may work for 2 to 2.5 hrs. It is advisable not to take, more than 3 times per day otherwise it will induce dyknesia. Take 45 mins before brake fast, lunch and dinner.
God bless you and your family.
I hadn’t heard of Mucuna before but it looks really interesting. He uses CBD oil which takes the edge off his tremor but doesn’t stop it.
I find that cannabis with THC helps more than CBD, it stops tremor in about 5 minutes. I also use Mucuna along with C/L and Valerian root tincture.
I am trying that also for tremors and stiffness and it seems to help. At first I took pure cbd oil but just got CBD:THC 20:1oil. Not sure how often to take it. What is your experience?
I forgot mention that Kapikachu is being natural Dopa, please reduce if you are taking allopathic Dopa, otherwise it may cause dyknesia.
Hi!
Someone recommended this Mucuna - healthyhabitsliving.com/pro...
Do you think this is it, I mean would this help against tremor?
I don't know , whether this helps or not. It is a whole bean, you have powder it for consumption.
I am using Kapikachu Indian raw mucana powder from Vidyaratnam , see the link, they deliver world wide :
Hi Ramuu,
My 75 years old mom has the same issue.. Sinemet really don't do nothing to her limb tremor on her both hands, she is totally devastated not to able to hold a glass or spoon. Plus she is loosing her motor function getting weaker and weaker. You said the India based raw Mucuna powder will give her quality life back taking 3 times a day ? Giving her 7 hour basically a day ? The other thing is the Anxiety hurting her big time usually before bed time.. From where should I order Mucuna and how much should I order ? Any advise ? Thank You so much...
I am using Kapikachu Indian raw mucana powder from Vidyaratnam , see the link, they deliver world wide.
vaidyaratnammooss.com/vaidy...
As they use DHL courier / Indian International Speed Parcel, the delivery cost per box of 100 grams ( Standaard packing ) , becomes expensive if you order small Qty.. I suggest you to order 10 or 20 boxes, per box cost Appx USD 1.19 per 100 Gramsbox + Delivery at actuals. As Kapikahu is natural dopa , one should adjust /reduce the dosage of Sinemet. Please note it should be always taken in Empty stomach to effectivcely work. Try first with moring dosage, give 1 to 1..5 max TBS ( 7.5 to 10 grams ) of kapikachu in about 200 - 250 ml of normal room temperature drinking water ( stir it throroughly, so that the mixtue is free of lumps ) are before taking anything tea / coffee / breakfast. Generally it starts working within 15 min to 25 min, but she should not take anything for min 45 mins , by then it would have completely absorbed , all tremor and other Parkinson symptoms would have stopped , after that she can take brakefast. Similarly , she can take before lunch and dinner , make sure that she does not take any food items between break fast - lunch ( min 4 hrs gap ) and lunch - Dinner ( min 5 to 6 hrs gap ). This also applies to Sinement, all dopa drugs works effectively in empty stomach.
Good luck !!
Parkinson's RX Sinemet, Rytary, CL also did not work for me to control the shaking/tremor of my Left Wrist, Thumb and Fingers. A 3rd neurologist confirmed there are a few persons for which the typical meds do not work or reduce symptoms just minimally. What does work is Oxycodone and THC which I use in the PM to try and get some sleep. During the day I use minimum doses of Oxy (5mg every six hours or so).
Did your neurologist prescribe Oxy for PD or are you taking it for pain?
Good question, I have fibromyalgia, spinal stenosis and a host of other issues including migraine and Parkinsons. The Oxy / Percocet was prescribed to handle pain but I found out quickly that it also reduces my Left hand/thumb shaking and finger tremor. I can't use NSAIDS or Acetaminophen because they blow my blood pressure through the roof. The THC also helps with the shaking, pain and the insomnia.
I'm sure you know you have to be careful with Oxy.
Absolutely, I use the minimum to achieve Reasonable pain relief. In retrospect have you reviewed the issues of long term use of NSAIDS and Acetaminophen: Organ failure, stroke and the list goes on. Oxy is safe and well tolerated with virtually no side effects. Abuse is up to the individual. Stupid is stupid does.
Madopar works very well for me
I've found that my tremor depends on my mood, regardless of medication.
I don't understand how a movement disorders specialist can say that! My neurologist has been able to get my resting and essential tremors with prescribed medicines to stop. Sinemet has helped me, a lot, for example.
Hi, I am on Sinemet 250/25 1 in morning and 1 in the evening. My shakes have gone. But we are all different with various meds. This works with me.
Take care
Have you tried considering or speaking to the neurologist about Stalevo? Its usually prescribed if Sinemet isn't helping.
I wish I knew as well. Nothing has ever been able to get rid of my tremors they’re either mild or severe never gone. Unless I’m in a very passive state between waking and sleeping.
Get another doctor...immediately.
Yes lots of neurologists, including mine, say that there is no medication for tremor. However I have been on a low carbohydrate diet for quite a few years and the first symptom to decrease was my tremor.
I do agree, however, I find that when I'm under stress the tremor does come out.
Unfortunately this is a radical change in diet for no guarantee of results. Not everyone reacts the same way.
Siminet 12.5 six tablets a day and no tremor.
I was DX 30 months ago and have been on Sinemet since. My tremor (right arm) is reduced by about 60%. A couple of times pharmacy hasn't been able to suppy Sinemet and given generic, tremor goes up about 15%.
In almost six years I have not found a medication that relieves the tremors in the right side (arm and leg). I am currently on amantadine, carbidopa/levodopa, and ropinirole (generic requip), but nothing helps the tremors.
That’s not good, I’m hoping something will work for my husband.
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