Shake, Rattle, and Spill? Tremors in MS
I live in a part of the country with beautiful green forests, mountains, abundant freshwater, and saltwater. If you have seven hours to spare, you can drive across the state and experience desert, orchard, mountain, alpine meadow, rainforest, and the Pacific Ocean. This beautiful land also comes with some known, and yet unpredictable, risks: volcanoes and earthquakes.
Not too long ago I read an article about the Cascadia Subduction Zone and a fairly recent discovery, tectonic tremors: a weak shaking of the ground that can last from minutes to weeks. Scientists are eagerly looking at the conditions that precipitate tremor and the relationship between tectonic tremor and large earthquakes. It’s possibly the most exciting discovery in decades, as far as tectonic plate research goes.
Tremor and MS
Are you wondering what the relationship between tectonic tremor and MS is? I’m sorry, the only connection that I’m aware of is the fact that reading about these geological mysteries caused me to think about one of my MS symptoms. Tremors. I have never mentioned it to my healthcare providers and, quite possibly, none of my friends or family. In that regard, my readers may consider themselves citizen scientists with this revelation.
According to the National Multiple Sclerosis Society, 30 percent of patients with MS will experience tremor. The most common type is intention tremor. This type of tremor does not happen at rest but increases as a person tries to reach for something with their hand or move their foot to a specific spot. This is my kind of tremor. Not as in, “Hey, you’re my kind of guy!,” just “Yep, that sounds like my type of tremor.” The name is entirely wrong, though. Intention tremor? Trust me, there is no intention behind my tremors!
The article did make me wonder what precipitates my tremors and if there is any connection between these weak shaky moments and MS exacerbations. The only noticeable pattern, thus far, is that they are worse after sleeping. Some mornings, as I reach to turn off the alarm clock, my arm and hand do this sort of herky-jerky dance from the bed to the nightstand. Stretching before rising can cause a similar situation in all of my limbs. I suspect it looks a bit disturbing. The first time it happened I froze in the bed, terrified that I was developing Parkinson’s to go with my MS. Apparently, Parkinson’s patients generally have a different type of tremor.
These tectonic tremors of mine are just a nuisance at this point. (I’ve decided to steal that name — it sounds way cooler than “intention tremor”). They cause minor disturbances when I wake up during the night, first thing in the morning, and after naps. As my hand trembles, I may squeeze five eye drops onto my cheek before one makes it into my dried-up eyeball; or spill a little water as the cup does a jig on its way to my mouth. I frequently knock my eyeglasses onto the floor and curse my weak bladder as I wait for my legs to stabilize.
The gang at Pacific Northwest Seismic Network has fueled my curiosity about both the real tectonic tremors and my MS version. Why do they only happen upon waking? Why not every time I wake up? Are there certain things that make them more likely? Are they a clue that something else is about to happen? I am going to put on my “science geek” hat and pay more attention to these nuisance shakes. It isn’t bothersome enough to add a new pharmaceutical, but perhaps there are natural remedies or other solutions. I’ll do a little research and share what I find.
Do you get MS tremors? What have you found to be helpful?
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
santo
Hello Judy Lynn:
I have had the displeasure of primary progressive ms since 1985. The one thing nice about this disease is no pain-no medication. The disease itself is frustration I can not move with out my muscles contracting.To move my legs have to physically lift my legs at the knees then slowly lift my body up. I feel am a prisoner in my own body.Every time I move have to let my muscles tense up then relax then make several attempts to move. When have muscles tense up if not in a balanced position will fall. Please keep in touch
Judy Olsen
I am sorry to hear that you have such trouble with tense muscles! But it also sounds like you persevere and have a warrior spirit inside your uncooperative body. I hope and pray for effective treatments for progressive MS.
BoscoBob
Thank-you for writing this. I truly thought that I was likely going insane. There would be no tremors until trying to reach for something, or attempting something "intentional". Then the tremors would start.
I have cursed this disease, cried and screamed at this disease...in the end, all that I can do is accept it. The one thing that seems to mitigate the tremors, somewhat, is THC. The downside is the "high". The CBD's that I use for pain control have much less of the "high" but do nothing for the tremors.
Judy Olsen
I'm glad that you happened upon this post. No, you are not crazy, it's just another spin of MS. Thank you for mentioning that THC seems to help. I did read that cannabis may be effective. Other treatments sounded like they had high risk and low efficacy. We have legal recreational and medical marijuana in my state, I plan to do more research as I understand it also helps with spasticity.
Olivier
I have PPMS, a combination between CBD twice a day + LDN 4.5mg work the best.
Pretty cheap treatment, no side effect, seems efficient.
Judy Lynn
That's great that you have found something that is working for you, without side effects! Thanks for sharing!
Olivier
Thank you Judy.
So far there is no treatment for the progressive form of MS, at least no safe treatment.
The LDN works good, I'm taking it for about a year now and each time I go to see my neuro, he is amazed by the progress done, even if they are small progress. The MRI done a week ago shows that my MS is now inactive and no new lesions are visible on the MRI.
The CBD helps others symptoms such as the bladder.
It is either a pure coincidence or that the LDN and the CBD work well since they are my only treatment.
Judy Lynn
I do wish for an effective treatment to halt progressive MS. And of course myelin repair! I wasn't sure if the LDN was for symptom control, but it sounds like you think it may have stopped the progression? I hope that your MS stays quiet.
Olivier
Thank you Judy, after more than 15 years with MS and many different treatments, the best treatment I got so far is the LDN.
At least LDN is not going to kill you like almost all the others...
If there is one thing I regret is to not have started the LDN years ago.
Lorraine Clark
What is CBD?
CBD is Cannabidiol. It is derived from marijuana.
Olivier
The CBD in one of the many chemicals founded in the marijuana / hemp. It is not like the THC which is hallucinogenic, the CBD is not and because of that, it is legal in all 50 States.
Judy Lynn
This website https://www.projectcbd.org/article/cbd-misconceptions shares some misconceptions about CBD and specifically talks about the issue of whether it is legal or not in all 50 states. I can't vouch for accuracy, but it seems like a legitimate site. Even if marijuana products are legal in your state, I still encourage you to check with your provider to ensure it is not contraindicated with any of your other meds or conditions.
Judy Lynn
This article on MS News Today discuss medical cannabis and MS. I encourage anyone considering a cannabis product to treat MS symptoms, to consult a healthcare provider.
http://multiplesclerosisnewstoday.com/blog/2016/06/14/medical-cannabis-has-a-role-to-play-in-ms-treatment/
Wendy Leob
I have MS since 1990. I am glad to see that I am not alone in thinking that it could be Parkinson's! I just recently started to have left hand tremors. I am left-handed,so, this really affects my writing too. I use my right hand to hold my left hand to help stop the tremor.
Judy Lynn
Hi Wendy,
Sometimes I have trouble with my writing also. I thought about getting some of those books for tracing, that they use to teach kids to write in school, and teach myself to write left-handed. I get tremor in both, but the righthand is more pronounced.
penny
Such a comfort to see this discussion. I also suffer from intention tremors… And was just musing to myself recently how unintentional they are.
They impact not only my upper extremities… But sometimes my lower ones as well. I can kick something or knock into something very easily. They also can be so strong in my body that they throw me off balance.
I find that when I'm under stress they are worse. I have to remember to breathe and slow down or I can really feel out of control!
Also have been using various cannabis products and I feel like they help… If but for a short while. I'm sorry to be naïve… What is LDN?
Olivier
The LDN is a very old medication called Low Dose Naltrexone.
It has been proven efficient at treating many autoimmune diseases and also it helps people with some cancers.
Please go to fiikus.net to learn more about LDN.
Judy Lynn
Hi Penny- thank you for sharing! I also find comfort in sharing with others. I must admit that I'm shocked at how many people seem to experience this and how little I've heard about it in the thirteen years since I was diagnosed. I'm going to pay attention to whether or not mine are worse when stressed.
Joan Quilter
Marijuana inhaler helps my daughter with everything, especially, with her mood whenever she becomes overwhelmed with the thought of her predicament. After 20 years of MS, she is now bedridden with tremors, major loss of vision and speech.
Judy Lynn
I am sorry to hear about your daughter's struggles, but thankful that you are there for her. It is such a frustrating disease! Does your daughter take a disease modifying drug?
Darrel Scodellaro
I'm relatively new at PPMS -- diagnosed in 2015 -- but not new at tremors. I'm 68 now and have had "essential' tremor since about age 10. Essential tremor is also called "familial" tremor or, in my words, hereditary tremor. I've traced it through my family tree.
Now with age and MS, the tremor appears to be worsening -- no big deal -- I've learned to live with it. I just always knew I'd never be a surgeon :) I had a 35 year career as a senior high chemistry teacher. When demos were required involving chemicals I'd just call on student volunteers! Inspectors would rave about how I involved my students but they didn't know my real reason!
Left hand is worse. Typing this involves careful use of my left paw!
What helps -- no magic pill here -- sedatives (valium, yuck), beta blockers (blood pressure med), and of course alcohol. Unfortunately, alcohol is very effective so watch out. Occasionally, I'll take a shot of whiskey or whatever ahead of something important. I've recently started using covered cups/glasses to avoid red wine spills.
Most important is to have understanding family and friends and laugh at it.
Judy Lynn
Well Darrell, you made me laugh multiple times in your comment, so job well done!I'm curious if your left hand is your dominant hand? I started making homemade bitters a couple of years ago. I can't tolerate much alcohol with my meds. I add a dropper of bitters to my tea or seltzer water and joke that it's 'medicinal'. Now I may have a legitimate statement there. (some of them actually are, for cough, etc)
The water on my nightstand is in either a kid's sippy cup or a coffee cup with lid- I hear ya!
Darrel Scodellaro
Judy, Fortunately my "more-affected" left hand is NOT by dominant.
Further note to all: tremor is usually exacerbated by physical strain. eg carrying a load
Avoid doing this if necessary.
Denise
So amazed at finding this conversation. I felt so alone in my experience with tremors. I first noticed them when I was stressed or more exhausted than usual. I also had internal tremors start about 5 years ago. Now, my tremors can evolve into whole body weakness and struggles if I do not take a break and rest. Neurontin and baclofen also calm them somewhat.
We were involved in a rear end accident a year and a half ago. Since the wreck, I have required 3 surgeries, multiple other med procedures and plenty of physical therapy.
One surgery was to to repair my shoulder. Initially, my tremor on that side was very uncontrollable. As I regain some muscle strength, my tremor is lessening.
I have a friend with MS who has constant intention tremor; her movements are always difficult when she is trying to use her arm. But mine seems more variable and effected by my fatigue. Do others share this type of tremor?
Tim Bossie
We are so sorry to hear about your tremors, but also the struggle you had with the surgeries after your accident. It seems that you have a bit better control of the tremors now... at least as far as knowing what to look out for in terms of fatigue.
Judy Lynn
Denise, we are glad you found this conversation! My tremor is variable and I'm paying better attention these days, trying to catch the pattern. Thank you for sharing that Neurontin and Baclofen seem to help yours.
That sounds like a terrible car accident! I hope that you continue to get stronger and find your tremor improving.
Susan Addison
I have secondary progressive MS. I experienced tremors for a brief time about 15 years ago. I did not know it could be related to my MS. However in December 2015, I developed a terrible tremor. I first noticed it when attempting to write gift tags at Christmas. At times, the tremor interferes with feeding. Other times, my head will tremor. Sometimes my trunk tremors, and when I stand, I often get what I call "the bounce" from tremoring legs. These symptoms came on with a severe relapse in 2015, continue to this day. They are worse when I am sick or fatigued more than usual.
Tim Bossie
We are truly sorry to hear this Susan. Are you doing any therapy, exercises, or other treatments to help you with these tremors?
Renee LaC
I hit the lottery with essential, intent, and postural tremors and worsen with fatigue or activity. Medical cannabis is legal in my state and does help with spasticity, not so much with tremors. Most effective was Carbidopa, usually given for Parkinson's. Worked for 6 months, then stopped working. Currently trying out low dose alaprozam (Xanax) 2x a day, seems to calm down for a couple of hours.