Recently diagnosed Dystonia : Can anybody... - Dystonia Society

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Recently diagnosed Dystonia

Toto88
Toto88

Can anybody plz help me with advice - I’ve been recently diagnosed with dystonia - it affects my neck & I have chronic head pain/jaw pain & ear pain/tinnitus hypercusis ! I’m on clonazepam - trying to get off Seroquel which the specialist believes has caused all this ! I’m also hypothyroid so all in all v ill & still in a lot of pain. I’ve tried so many different meds but I wondered if any of you had burning neuralgia pain accompanying your stiffness - I can’t find any resolution for this - awaiting neck Botox but due to the Covid-19 could be waiting well over 6 months for this ! I’ve started mirtazapine today because I am so low xx I really need help & any advice would be welcome plz x My legs are starting to become stiff & painful too now xx

12 Replies
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I can only share that I have experienced the exact same symptoms - burning neuralogical. GABA pentin does help me with it but I don’t take too much. There’s a natural cervical dystonia recovery program that’s offered remotely through a woman named Abigail brown it’s in Santa Fe New Mexico you can look up spasmodic torticollis recovery program she will send u CD with exercises and program etc I have had trouble with it because of the nerve pain but I think it’s worth looking into because it offers a lot of good advice it’s $500 for remote program

Toto88
Toto88 in reply to jhop

Hi - thanks for getting back to me. May I ask was your Dystonia medication induced ? The burning neuralgia is mainly in my head & legs - I did try gabapentin for awhile but it knocked me out even on a low dose ! Have you not tried Botox in your neck ? I’m UK based by the way -

For me chiropractic/soft tissue work on my neck,jaw and acupuncture n cupping.The cupping i just tryed and Im definately gonna do again for my pain n inflammation ,after we r past this coronavirus.

Make sure the chiropractor does xrays first..gives him more answers n can help ya better.

Heat...heating pad really helps when the jaw n neck is super painful.

I also use medical marijuana for my dystonic storms.

Toto88
Toto88 in reply to hippolove1

I was havg physio before the Coronavirus which was starting to help a little ! She does do acupuncture so this may help you say ? What is cupping plz ? I keep thinking about trying CBD oil - if it’s prescribes for ms & epilepsy then surely it should be beneficial for Dystonia !

hippolove1
hippolove1 in reply to Toto88

Acupuncture,cupping,cbd oil is very fickle.Some it works for,some not..just depends on the person.Ur acupuncturist can explain the cupping.Cbd oil doesnt work for me (i use thc medical marijuana)but alot of people use it for Dystonia with good results.

I had the same exact issues and tried Botox a few times, but it didn’t help me much. I discovered that my pain is greatly diminished by going on keto diet. Meaning under 20 grams of carbs a day. It has really changed my life! That’s just my experience - I don’t know how it would work for anyone else. But I was having chronic headaches and neck pain/shoulder spasms, etc. and now it is much more manageable. Prayers to you!!

Toto88
Toto88 in reply to Gwhowell444

May I ask is your dystonia caused by medication like mine & how did you find out about the low carbs diet plz ?

Gwhowell444
Gwhowell444 in reply to Toto88

I have no idea what started my Dystonia. It might’ve been medication, but I do t know. My son kept insisting that I try keto, because he said it helps a number of physical ailments. So I finally went all in abd was so surprised that it helped me so substantially! I’ve been doing it mostly on for two years now. When I’ve “cheated” with sweet treats I can tell! My pain goes way up! Sugar causes lots of inflammation. It’s been a major godsend for me!

Hi Toto88, I have been dealing with cervical dystonia for 34 years. I searched for the cause for many of those years but that incessant questioning just became a rabbit hole and in fact interfered with my process of finding strategies that worked for me. I never uncovered a rock solid answer. Presently I am fairly comfortable with botox injections every three months, (they did not work first try but are better located now) Mirtazapine 7.5mg at night and Lorazepam 3 mg per day in divided doses. This works for me right now. (Some find that Flexeril helps, or Baclofen or Zanaflex or Clonazepam). And at times during these years I have had complete remissions for long periods as well. I wish you all the best and really wanted to tell you that this has been a journey. One which has required trials of different meds and procedures, and patience and faith in myself and my resolve. All this takes time and is a learning process. But you can be much more physically and emotionally comfortable. You can get to a much better place than where you are! I started by reading a book called "When Bad Things Happen to Good People". and then "Love, Medicine and Miracles" Sending you prayers.

Toto88
Toto88 in reply to pepper7172

I will have a look at those books you mentioned & many thanks for replying. I so desperately want to try Botox - my head neuralgia pain & neck stiffness is on a totally different level ! I honestly cannot live with the pain & I don’t really see anyone on here mentioning this - which is why I am looking into other poss. for the pain ! I have hypothyroidism which is not under control & a T6/7 disc herniation which may or may not be causing a CSF leak - I’m awaiting another MRI ! I know everyone is different but I’ve found even 1 Year absolutely horrendous & I have no life at all - I’m housebound & bed bound most days ! Does this sound to you like someone who is suffering just with cervical dystonia ?? Sorry for my rant but I’m just v v tired of it all x

Please read my reply (re: Mucuna Pruriens -natural bean-levodopa) to Wizardsmom who just posted with almost the same thing as you have. Since you are on other meds you should discuss it with your doctor 1st. I don't have neuralgia pain and feel for you as it's not pleasant for the many that do. You can try Magnesium bis-glycinate (200mg) for your leg pain. I use it every day and mine hasn't come back for awhile now.

Hi ride about - thanks for looking at my post. The levodopa you speak of is this a natural product & where do you purchase it from ? Also what type of symptoms do you suffer with plz that it also helps with ? I would rather try anything herbal than pharmaceutical but how did you come across it ?

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