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aarniek
@aarniek

Posts: 33
Joined: Oct 30, 2016

Spasticity?

Posted by @aarniek, Sat, Apr 7 11:32am

I have been living in my recliner for over 5 years as this muscle spasticity keeps me from walking more than a few feet! It's due to stopping a Benzo with a 5 week taper and 3 neurologists have done nothing for me! Anyone find something to help?( I even had Botox and it did nothing)

REPLY

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

@aarniek, sorry to hear about your spasticity issue. I have/had severe spasms and cramps in my feet and legs, so my doctor prescribed physical therapy for me. She was the first to do so. Previously, I had just been prescribed more gabapentin by my neurologist. I was taking 1800mg daily, and am now down to 900mg daily. The physical therapy did wonders for me. I saw a therapist for about a month and now do stretching exercises at home twice a day. I haven't had any cramping for almost a month and am able to walk without having a problem with cramps hours later. (My cramps are always a delayed-onset situation, usually hours after walking or doing any type of exercise.) I also take a yoga class a couple times a week, but have to be careful about anything involving the feet and legs due to the neuropathy. I really recommend trying any type of physical therapy that can be tolerated. It's really helped me.

Hi, spasticity has become my world. It started about 4 months ago and I have had no relief in all that time. It is in my foot and lower leg due to my stroke. I have tried/been prescribed several muscle relaxants with no relief. Of course, Blue Cross is nice enough to not allow several meds that might help… But, I will never know. I am starting with a new PT tomorrow and maybe she can figure something out…

@maryar I appreciate your joining this discussion about spasticity. I am glad to hear that you will start with a new PT soon. I'll be looking forward to hearing how that goes for you.

My spascity is related to Parkinson's and it is delayed-onset situation (I can walk OK for awhile and then when I begin to get tired it hits me) similar to what @magg discussed in her post above.

One thing my PT explained to me is the importance of holding stretches for at least 30 seconds. She said that it takes that long for the muscles to completely stretch out and relax.

@aarniek I hope that these ideas are helpful to you.

@maryar I would enjoy hearing from you again.

Teresa

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

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It's only the muscles in my back ,shoulders ,head and neck and sitting in my recliner relieves the back and shoulders part,but others who cold turkeyed a high dose Benzo have this,just no one has it to where it's disabling !(also I am 80 years old and that may be part of why I have not gotten any better in over 5 years!

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

Hello @aarniek

I am sorry to hear about your continued spasticity. Those of us who have this problem understand how uncomfortable it is. It really upsets your way of life, doesn't it?

Have you talked with your doctor regarding an order for Physical Therapy? Usually you can get a lot of relief from PT. Also, has your doctor mentioned using either heat or cold on the affected area? There are also some muscle relaxers that can be prescribed on a temporary basis to offer relief. Your doctor would be the best one to advise you on which would help you most (or perhaps a combination of therapies).

Keep in touch and let me know what you have tried. I look forward to hearing from you again.

Teresa

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

Teresa,
I don't think I'm having spasticity. I'm having shaking ( tremors) in my fingers from 3 things meds -Clobazam, Divalproex Sodium ER; heredity; and seizure history. I'm a 43 year old female who's had a few thousand seizures coming from the left temporal lobe of the brain from a lesion I was born with from a fever my mom had during pregnancy. I would move my mouth salivating and clenching and moving my right fingers together. My fingers, hand, and arm on the right are weak. I have a hand instrument with weight that I push the keys up and down like playing a piano. I had a temporal lobe lobotomy done in 2011 where they removed both the lesion and the left hippocampus- problems I have are with short term memory and when you want to say, speak, write something you say speak write something else

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

Hello @12271997

I appreciate you sharing your rather complex medical history with us. How are you doing with the tremors/shaking?

Teresa

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

They happen mostly in my right hand and fingers since my left side of the brain was affected. I use grip masters to help strengthen my hands and fingers when I'm watching tv that involves so much weight. I bought mine at a sporting goods store. I use my left hand as well. I also pick things up with both hands. My other concern is aphasia where I'm speaking and writing. I thank God for synonyms. I probably need to go to a speech pathologist but I'm sick of tests. I see my neurologist at the end of the month. I was wondering if you have any advice. I also need to learn how to specify what e-mails I want to receive. The directions aren't making sense right now because I'm not computer savy

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

Hi @aarniek, I am sorry to hear about your problems with muscle tightness. I had been taking 1.5 mgs of lorazapem from April 21st up until about 3 1/2 weeks ago. (My anxiety and sleep problems came from a family situation which has gotten better.) The anxiety was much better during the day so my Dr. said I could stop taking the .5 mg during the day. I felt fine for about 2 days then started having really bad muscle aches in my body, especially my quadriceps and calves. My back has been especially spastic and has been causing pain due to very muscles.

Have you considered trying a T.E.N.S unit to help loosen muscles and for pain? You can find them for about $45 online. I found mine at OTCWarehouse. You also have to purchase the sets of electrodes which start around $1.99 for a set of 4. This has helped me greatly.

I am going to see my Dr. tomorrow and am going to ask about a tapering program. I have looked at Dr. Aston's tapering manual. I don't want to go on Valium so I am going to attempt to taper from the lorazapem.

I have started feeling a bit better almost 4 weeks after my .5 milligram cut. I am still taking the 1mg at night.

Have you ever heard of CBD oil? I have purchased the 750 mg topical CBD cream from Medterra and have been applying it. It has been helping to relieve the muscle pain. It is a bit on the pricey side at $89.99 for 3.4oz, but just a little bit goes a long way and after applying it on my problem areas, the pain is gone for about 4 hours. It did take a few days to get in my system and start working. There are other brands of CBD topical creams. Definitely do your research. I researched for about 3 days before settling on one. The company is reputable and their products come with a 30 day unconditional money back guarantee. I am not trying to promote them; as there are other reputable companies out there. I am just sharing my personal experience.

I have also purchased their 3000mg oil that I take under my tongue .5ml 1 hour before bed for sleep. I am prepping my body for when I start to do my taper because insomnia is one of my biggest concerns. The CBD oil has also helped with anxiety as well. I take .25ml of the 1000mg bottle as needed for any rebound anxiety.

I will tell you that CBD products are VERY pricey. But they work when you find a good product and a reputable company. I found out about CBD products by doing an online search for things that aid lorazapem withdrawals. My search led me to learn about CBD and how it has helped others with withdrawals. I didn't realize that severe muscle cramps, pain and aching were a part of benzodiazepine withdrawls until I researched it. I was diagnosed with Fibromyalgia in 2012 and thought perhaps it was just a bad spell. But then I realized that what I was experiencing was unlike anything I had experienced before.

I really hope this information helps you. I am glad you are still here On this website. I joined this site just so I could reply to you and tell you what has helped me. I am praying for you!

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

I tried both and neither helped,but I appreciate you telling me ! I am in year# 6 of this insane muscle tightness and getting worse each year! The only thing I have not tried is an oxygen chamber ,even had Botox injections and nothing ! Trying to do the chamber,but my doctor has not approved me for it yet!

@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

Just saw this- can't take ANY medicine – ALL made me worse ( dantrolene,Zanaflex,Flexiril ,what ever ) ,,but thank you for your post!

Please visit a Movement Disorder Neurologist – ONLY! That's their expertise…Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

@oakbourne

Please visit a Movement Disorder Neurologist – ONLY! That's their expertise…Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

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@oakbourne

I appreciate your posting about your disorder and I am sorry to hear of the many problems you have experienced. You certainly provided some helpful information. In reading a bit about the Selective Denervation Operation I see that it is often followed up by physiotherapy? Did you have that as well?

I look forward to hearing from you again.

Teresa

@oakbourne

Please visit a Movement Disorder Neurologist – ONLY! That's their expertise…Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

Jump to this post

My neurologist knows causes are hereditary my grandfather and dad have it. Meds I take do .and he says he'll change the doses if I want to I'm not making any changes to my meds b/c seizures are being controlled. I also take klonopin and do the exercises for hands and fingers

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