As a sufferer for over 4 years with no treatment, how on earth do other people in my situation manage with daily life, social life ,work , dating. The physical aspects as well as the emotional and mental toll with how self conscious it can make you feel and how exhausting it can be?
I (33f) was officially diagnosed with Cervical Dystonia last Monday, and I’m beyond relieved to finally have an official diagnosis. I went through 7 doctors, multiple hours of PT, Chiropractic adjustments, dry needling, acupuncture, etc.
For the longest time I felt that I had dystonia all along. As much as it sucks to know I’ll have this for the rest of my life it’s a breath of fresh air that a doctor finally listened, and I’ll start Botox treatment soon. I’m truly hoping it’ll give me some relief.
My everyday symptoms are: right upper trap constantly inflamed, constant shoulder pain/burning, head tilt to right, constant pulling to the right with right shoulder raising to ear, neck tightness, and not being able to hold my head up (mostly in the morning)
As a person who was pretty active before I’m hoping to get my to a somewhat “normal” life again. I think I might cry when I’m able to simply just walk my dog again without being in constant pain.
For those of you looking for answers do not give up!
On top of this I take care of a family member who also has their own set of health issues. If I didn’t have them in my life, I’d probably just end mine at the rate things are going. Things are only getting more expensive and my pain and discomfort just keeps getting worse. I don’t know what to do anymore.
Edit: when the Botox was working I was working a job and felt free, but unfortunately this all ended up not working. Had to leave the job. Looking into xeomin now but Dr. said I’d have to wait til 2 treatments from now, which is like 4 months away.
Hey all. I’m about 16 days into my first Botox round (120 units) but I’m abysmal at making charts. I did a small progress note on day 11, but I didn’t do the best job at this. How do you all do it? What is the best layout and since it’s been two weeks plus, how do I recollect everything that I’ve experienced?
Thanks in advance.
I've been seeing a neurologist for about a year and half. She did a great job dialing in the right injection medication and locations, which seems very difficult and involved some trial and error. When she uses the EMG, she digs around a bit to find just the right spot where the tremor is loudest, so it takes time, but seems to be the most effective.
EDIT for clarity: This round did not go well, and as the days pass the tremor gets worse and worse. I dread the next 2.5 months before my next injections. Well, she's now leaving my health insurance. I've seen another doctor who really wasn't given the time she needed and, while she used EMG, didn't really seem to wait for just the right spot where it was loudest. I'm planning to have a conversation and get the two doctors to talk to each other about the best method, hopefully the new one will be willing to hear me out.
I'm so frustrated and tired. This has been a multi-year saga of not being listened to, having medication after medication fail, while having this tremor that makes it so hard to just exist as a person and a worker. I need some relief. I'd be willing to switch insurances for the right doctor. I'm at my wit's end.
I developed oromandibular dystonia during pregnancy about 2 years ago although it was only diagnosed a year ago when I was finally referred to the right doctor. My symptoms have continued after giving birth and gotten worse leading to long periods of extremely painful spasms of my jaw and tongue. During my spasms, my jaw deviates and I am unable to voluntarily move my jaw/mouth and I struggle to keep my tongue in my mouth and avoid biting on my tongue. I have been doing botox injections with a neurologist for a few months and seen some improvement but I am still having to take muscle relaxants twice a day to prevent spasms. I want to have another child and so it is important to me that I stop taking the muscle relaxants as there is little to no evidence of the safety of taking them during pregnancy. I have tried physical therapy and most of what I was taught was just stretching. I am interested in learning if there are any other lifestyle changes anyone has seen to have been helpful or any "tricks" to alleviating symptoms (for instance, I have found that trying to drink through a straw when I am having tongue spasms will stop them for a few seconds although it is not long-lasting relief). I know that nobody can give me any medical advice, but I am looking for any tips anyone can give me who may have a similar experience including anything you've found to help prevent or stop spasms.