Help with Cervical Dystonia please - Dystonia Society

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Help with Cervical Dystonia please

Wizardsmom
Wizardsmom

Hi, I was recently diagnosed with Cervical Dystonia after being unsuccessfully treated for a head tremor caused by MS. I received Botox 3 weeks ago and my pain and tremors seem worse. My question is, what other medications are used to treat Dystonia? What else can I try?

34 Replies
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I have found that Botox works for me. Speak to your Neurologist about meds. The only advice I can give is to support your head as much as you can ie put your head on a headrest or pillow. Helps to ease shaking & pain (but not straight away after 5 or 10 mins or so).

I have head and internal upper body tremor and neck and head dystonia (no twisting but tight stiffness) , sometimes in one leg and stiffness internally in diaphragm (SOB) and swallowing mechanisms. I'm on a waiting list for a dystonia clinic here in BC.

I started on Mucuna Pruriens (a bean), a natural form of Levodopa that people with Parkinson's disease use. Have been on it for almost 1 1/2 yrs. and only take 1/8 tsp. as it's very pure. There are many types to take (some whole bean) but I use a brand from the US website NutriVita.com. There are a few other good brands in the US. (Barlow's is one I've heard is good). I've tried many types including the pharmaceutical brand Sinemet but it makes me sick every time.

I read up about Dopa responsive dystonia first since I had not seen a Dr. since diagnosis. I have about 4 hours of relief from stiff neck and head, tremor and other symptoms. Mucuna is available almost everywhere and is well used in Parkinson's disease. If you would like more information about it just do a search in the Parkinson's forum and you'll find lots of info. Linda

Wizardsmom
Wizardsmom in reply to rideabike

Thanks for the information. I just may try it.

Toto88
Toto88 in reply to rideabike

Hi again Linda - I was looking again at the mucuna bean you have spoken about. I know you are US based but what is the brand you use plz & can it only be bought in the USA ? I have hypothyroidism so I may have to spk with my GP first about it - there are a lot of side effects I’ve read aswell which is quite worrisome but I’ve read you only take it 4 days a week. Is it 1/8 teaspoon you take plz & does it def help with the stiff neck ? I don’t know whether you get chronic head neuralgia but I’m hoping that the less stiff my neck is - the less my head pain will be !! I know you can have levodopa prescribed from the pharmacist but what actually made you decide on taking it in a natural way than prescribed plz ? By the way thanks for linking me with wizardsmom - it’s nice to be able to spk to someone who understands x

rideabike
rideabike in reply to Toto88

I'm in BC Canada but I have to order it from the US. I lost my thyroid gland to cancer and

the medication IS affected by levodopa so I have to take a little more levothyroxine. It is always a good idea to talk to the doctor first. Interesting that you mentioned tinnitus. I get that quite often but levodopa helps and when it wears off the tinnitus acts up. I'm not in any real pain as you are, just very uncomfortable and the stiffness is just gnawing and moves to the inside (axial) areas where it causes a bending forward type walk and chest stiffness leading to SOB. I also cannot control temperatures. But I do get the head/neck tremor if I don't take dopamine. The brand is NutriVita from NutriVita.com. You can check it out and see where they'll send it to. I wonder if you would mind if I asked you if you feel that you've been affected cognitively. I sure have a problem with apathy but not depression, executive function can be oddly affected too. My eyes are affected with convergence problems and dysphoria....it's getting complicated. Also thinking my blood pressure is affected and I have something like vertigo that comes and goes. Not the same person I was that's for sure. I'm 68. Sorry this is so long toto88. I hope you could at least try it but someone maybe able to help you find some levodopa in the natural form MP if you check out the Parkinson's site or talk to your doctor as he may even know of some that are using it there. Many are and share information about the brands they use. Take care and ask away if you have any more questions. (I wish I knew how to space my posts like yours??)

Toto88
Toto88 in reply to rideabike

Afternoon Linda - hope you’re ok 🙂I will certainly look into the levodopa on that site ! Since becoming unwell I’ve found that because of the pain I don’t really do much at all - my dystonia came on overnight after a dystonic reaction. I find it v difficult to be in the sun or cold & I react terribly to it ! Any heat or cold makes my head worse & wind is v v painful to my ears ! It’s as though I’ve become super sensitive to everything - sound & temperature. I find I’m v v lightheaded all day & cognitively it’s a struggle - takes a v v long time to just write something. I’m v v tired all the time - my eyes are painful ! I just feel overwhelmed really by how v ill & in pain I’m in every day - nothing has really touched the pain ! I just feel so out of touch with reality - my surroundings because my senses are so messed up ! I was saying to wizardsmom about having a thyroid condition which both you & I have aswell ! I believe honestly that because of that & just being treated with a synthetic tablet our immune systems have incurred other disabilities now - it prob wrks ok when you’re young but I don’t think the tablet remains or does anymore what it’s suppose to do when you age & any form of pharmaceutical drug over time loses it efficiency - so the thyroid drug must do aswell ! My belief anyhow x may I ask what SOB is plz - sorry for my ignorance x

rideabike
rideabike in reply to Toto88

Sorry it's....shortness of breath. In medical terms they often just write SOB. Sounds like a bad word and I just hope people know what I'm writing about. 🤔 😮. Sorry for your pain and suffering. Not pleasant. I feel that mine started after my thyroid surgery. Shortly afterward the cognitive brain fog started and it just progressed to other things like-- severe anxiety and a few panicky feelings....( there's more) The head tremor started about the same time but back then it was mild. I had knee surgery before that so 3 surgeries in a row and I read that anaesthesia can bring on dystonia and Parkinson's.

I am taking a mix of synthetic thyroid meds and thyroid hormone. It's been a lot of trial and error to get the right amount and doctors don't like it because the thyroid hormone is not always exact in T3 measurement but it works better for me to have the mix since I totally depend on it for energy. I feel the synthetic stabilizes the hormone because of the changes in each batch of thy. hormone.

Like you I also feel so much worse in winter. Spring is the best time of year for me. Summer I nearly pass out if it's too hot.

Our symptoms are similar. The movement disorder specialist wouldn't prescribe me levodopa so I got it on my own. It works very well if I take it everyday but as soon as I miss a day it all gets worse and stiffness is unbearable. I just sit, have no motivation and feel like I'm in a box and have no desire to get out. (It would be great if I was a cat!)

I take a number of supplements, some for sleep, but find that for mood 5HTP is very helpful and take it before bed so I can wake up happy. I can't sleep without lots of supplements and have avoided medication so far.

I read that in Parkinson's they aren't able to read people's facial expressions or express their own and I feel that applies to me so big question for me; is this atypical Parkinson's? My face and head have been strongly affected with stiffness but it certainly is a cognitive affect as well. Many PWP (people with Parkinson's) get dystonia too . I'll send you a message with how I keep a positive outlook. Like I said, it's complicated!

Toto88
Toto88 in reply to rideabike

Lol - no problem about the SOB actually I feel like that every day aswell . Prior to me going downhill I was actually an apprentice landscaper! I’m a woman yes - but I was so physically strong & fit, this is what aswell is making life so difficult. The former me has gone & im just a shadow of her - to be honest I feel broken ! I have looked at the 5HTP - that’s natural serotonin isn’t is ? Today aswell I had the bad news that the NHS will not fund my liquid levo so I will prob have to pay privately for that & the T3 the private endocrinologist wants me on ! You mentioned about the facial expressionless - well that’s me too & what is v v strange is that my eyes especially the right one become enlarged as the day goes on -my sisters have both noticed ! I’m so sorry you have to go through what you do every day & it’s lovely of you staying in touch ! I will look forward to reading your message about how you keep positive 🙂 & again it’s a real pleasure to spk with you Linda x

rideabike
rideabike in reply to Toto88

5HTP probably boost serotonin... yes, I need all the help I can get. It's nice we can connect like this and read all the different situations we're all in. HealthUnlocked has kept me sane because I didn't even have the report read to me by the doctor after seeing the movement disorder specialist and didn't find out for almost a year. So I've had to do all my own research but there is lots to read on the internet. It may not solve the problems but we have a need to know. Hope the days ahead are brighter!

Toto88
Toto88 in reply to rideabike

Yes I’ve been on this site & the thyroid site which have both been great. That’s appalling that you didn’t get know for nearly a year ! The 5HTP does that interfere with the thyroid ? I’m not on any antidepressants now but I was thinking maybe trying the natural form of serotonin because I am def v low ! It’s knowing what to be careful of taking - I recently stopped my HRT because I didn’t benefit from it at all - only took it for 3 months but they say that def interferes with thyroid ! So I may try that & the levodopa but prob spk to my GP first.

So I’ve heard that Canada 🇨🇦 is a beautiful place - were you born there ? I’m born & bred Essex - about 25 miles from London ! Lived Scotland for 7 years & other English towns ! On here you can private message - so it maybe better if we chat that way if you’d prefer ? Just other people can read personal stuff this way 🙂

rideabike
rideabike in reply to Toto88

I don't think 5HTP interferes with thyroid. Dr. had to lower my thyroid meds just recently. BC is a beautiful place in Canada where I've lived on and off for 22 years but I was born in Quebec, Canada where winters are colder. Lots of mountains here and now I'm in the southern part where the weather is more tolerable in winter. (there are cactus here!) I've always wanted to go to England or Scotland (English, Scottish, Welsh in my genes). I'm enjoying your posts and hope to learn something.

Toto88
Toto88 in reply to rideabike

I’ve tried finding the mucuna on the site you said but no product comes up on it ? Is it NutriVita.com ?

rideabike
rideabike in reply to Toto88

Sorry I didn't get back to you. Having a few bad days but looked it up and it's

nutrivitashop.com Look in the search box for L-dopa. Will get back to your messages when I'm feeling better. Keep well and safe.

Toto88
Toto88 in reply to rideabike

Hi Linda - just a quick catch up to see how you are x I’ve sadly really deteriorated & I’m waiting on hearing from a CFS specialist to see if I may have a spinal leak ! I’m in excruciating pain - I managed to spk to three naturopaths prior to me going down hill & all three have said that def 5HTP will prob benefit me, the mucuna they will have to see it interferes with my other meds & I did mention about the Thiamine aswell! I’m waiting for a private prescription of liquid levothyroxine & then after 6 wks a trial of T3 !! Anyhow I hope you are feeling better & the sun is shining where you are xx big hugs x D

rideabike
rideabike in reply to Toto88

Good to hear from you and in spite of your pain, your positive attitude. I sure hope someone can get to the bottom of it soon. It sounds like you have some good doctors available to you. Take care and keep safe.

Hi Wizardsmom - I was told about your recent post by rideabike & it was mentioned you have a lot of symptoms similar to mine but I have not been diagnosed with MS but cervical dystonia. I don’t really have the head tremor but I have chronic head neuralgia daily & neck stiffness- along with jaw pain & ear pain with tinnitus & hypercusis! My body also cannot control temperatures! I have hypothyroidism & also a T6/7 disc herniation which is being looked at again. As of yet I haven’t had the Botox in the neck - I’m awaiting this on the NHS! I’ve just started taking CBD Oil to see if it will help & I take clonazepam but so far I cannot get my pain under control & it’s been a year since being diagnosed ! I am in torture daily ! My dystonia is medication induced they think - but because my symptoms are so overlapping they are looking at everything! My endocrinologist wants me to try T3 treatment - I may have a CFS leak because of the disc herniations ! I’m a complex case but like yourself it’s a real shame that we have to find some sort of pain relief or treatment & have to come onto sites like this to get help ! Have you tried any muscle relaxants ? I may retry gabapentin for the neuralgia pain but recently I’ve even been given morphine & I honestly don’t want to go down that road & become addicted ! How long may I ask have you been diagnosed with MS ? It would be lovely to chat with you - I’m female by the way 🙂 although my username may not reflect that lol - Anyhow im here anytime - T care x

Wizardsmom
Wizardsmom in reply to Toto88

Yes, it would be good to chat. I have had MS for 5 1/2 years. I was diagnosed with Cervical Dystonia a few months ago. I went to my neurologist today because of my extreme pain. He put me on tramadol with Tylenol 3 times a day. I have tried baclofen which didn't help much with relaxing the muscles. I'm hoping the tramadol helps. I also use THC sometimes when the pain and spasms are super bad. It does help, I just dont want to be using it all the time.

I would love to chat some more.....I look forward to hearing back from you.

Toto88
Toto88 in reply to Wizardsmom

Hi again - hope you’re feeling a lot better x how are you finding the new meds you are taking ? I know it prob takes awhile to properly feel the full benefit ! So you say it’s been more than five & half years you’ve had MS - so you’ve been on quite a journey. A good friend of mine, her mother had it for at least thirty plus years & she was such a beautiful soul - I admired her v much because whenever I saw her she was always smiling & that is rare ! Life is so unfair hey ! So do you know of any reason why suddenly you have now developed cervical dystonia - I know I mentioned mine is medication induced ! Are you UK based by the way - just a lot of members on here are in the USA 🇺🇸- Big hugs 🤗

Toto88
Toto88 in reply to Wizardsmom

Oh I forgot to ask aswell - how is the Botox wrkg yet ? Some say it takes a few times to get any results & it must be targeted correctly in the neck ! I’m Davina by the way x

Wizardsmom
Wizardsmom in reply to Toto88

Hi Davina, I live in the U.S. So far the tramadol and tylenol seem to be helping a little. I dont think the Botox is working. Its funny because I have hypothyroidism as well. I dont know what caused the Cervical Dystonia though I know it can be caused by medication. My doctor hasn't given me a reason why I have it.

My MS has been quite a journey. It started out being very aggressive but with medication it is calming down. Thanks for asking about it....

Krissy

Wizardsmom
Wizardsmom in reply to Toto88

Davina, how are things going with you?

Hi Krissy - still just trying to manage to get through each day really - thanks for asking ! How’s you today x I’ve been spkg to Linda from Canada 🇨🇦 on here - I keep thinking maybe to order some of the natural levodopa whilst I’m waiting to get the Botox ! Are you getting any real benefit yet from your meds ? Are you by the way in lockdown still - here we are thinking of starting to open some places & sending some children back to school but I think it’s too early - we still have hundreds dying here so I think our government is too concerned about the financial economy & making a v silly mistake ! I hope you are keeping safe x

Wizardsmom
Wizardsmom in reply to Toto88

Things are slowly opening up here in Utah where I live. Kids won't go back to school until the fall and they are still debating on that. I dont know if my medications are helping or not. I still have a lot of pain and my head is tremoring like crazy. I'm starting to feel desperate for anything that may help.

Krissy

I’ve emailed a few naturopaths & have asked if there willing to wrk with me - the mucuna & I heard thiamine can help plus 5HTP - it maybe another avenue you could explore ! I’m desperate too to find relief Krissy so I understand totally ! The way I see things though is that Dyskinesias & akathisias are another poss side effect of pharmaceutical drugs - these cause burning neuralgia pain & most people (me included) have a restless inner feeling which is why I’m trying alternative stuff ! I will try the Botox but I’ve refused gabapentin & morphine ! I feel completely out of my head even on a low dose & what kind of life do they expect when you can hardly walk or see straight !

Wizardsmom
Wizardsmom in reply to Toto88

What is 5HTP?

It’s a natural form of serotonin - I can purchase it from must vitamin homeopathic stores & online ones ok

Plz though krissy spk with your Gp or naturopath before taking any supplements because it will enhance any pain meds - antidepressants etc & if you take too much serotonin you can get serotonin syndrome ! Serotonin though if you are lacking can cause muscle pain & migraines & other pain problems - depression - sleep deprivation! Patients that have fibromyalgia often use it & benefit from it & some people with Dystonia have benefited from it - so there must be something in it ! I’ve read start slow 100mg - 200mg daily & then 3 x a day ! I will ask the naturopath if she knows of a good supply source - aswell as the thiamine & mucuna ! Keep you posted ok x

Wizardsmom
Wizardsmom in reply to Toto88

Thanks!

Hi Krissy - just thought I would see how you are x I’ve spoken with three naturopaths - I’m debating at the mo which one to go with but I’m also waiting on a Skype patient call from a CFS Specialist - think I mentioned I may have a spinal leak because of a thoracic herniation which may account for some of my symptoms. Anyhow that is in two weeks time & depending on what she advises, tests etc then after I will recontact the neuropath I want to use. So how are the meds wrkg & also the Botox has that kicked in yet ? Much luv to you & your family x keep safe x D

Hi all,

Anyone here have cervical or other dystonia caused by manganese exposure? It's rare because there almost has to be airborne exposure (welding, buffing, trains, lots of auto exhaust, etc.) plus poor detox genetics (glutathione / sulfation related). The poor detox genetics can also explain why someone acquires dystonia from medications while 99%+ don't). Manganese can also trigger Parkinson's and RLS ).

Good luck everybody. Hang in there.

Hi, there. I had Botox injections for around 12 years. These reduced the pain but after each set, I felt that my head tremor worsened. I eventually gave up on Botox and reluctantly took diazepam as prescribed by my GP along with Paracetamol for the pain. I hate to say that both are pretty useless and I hate taking them, particularly the diazepam.

I have found on YouTube a number of videos by an American girl called Ashley. These are very helpful and have given me some hope at last. My son found a gadget on the internet which, when you rest your head on it while lying down, puts pressure on the muscles which are overactive in my neck. Ashley goes to a physical practitioner who does the same thing manually and she says that now the treatment lasts for around 6 months. I am already feeling the benefit of my pressure gadget.

If you want any more information, please don’t hesitate to ask. Very best wishes to you.

Wizardsmom
Wizardsmom in reply to Gjan3

Hi, I would be very interested in finding out what the gadget is that you are using.

I had my 2and group of Botox injections few weeks ago. I am having a lot less pain and I feel that my head tremor is improving. I'm crossing my fingers that it will just keep getting better, and I'm wishing you luck that the methods you are using continue to help.

Krissy

Gjan3
Gjan3 in reply to Wizardsmom

Hi Krissy,

Really glad to hear your Botox is helping you.

The gadget didn’t have much information with it but I’ll try to find out and let you know. All the best!

Janet

Gjan3
Gjan3 in reply to Wizardsmom

Hello again. Just checked and found that gadget is called Ascendons C-Rest and can be bought from Amazon. Apparently there’s also a Video on YouTube to show how to use it. Good luck!

Janet

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