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
Recently diagnosed Dystonia : Can anybody... - Dystonia Society
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
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.
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 !
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!!
May I ask is your dystonia caused by medication like mine & how did you find out about the low carbs diet plz ?
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.
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 ?