I’m afraid my story might not be of help to anyone here as we all have some form of it. But it feels good to vent! I noticed, and it was only very rarely and under infrequent moments of duress, my neck turning involuntarily to the right and tilting up and then, within a minute or so, relaxing. It did cause me to become more aware of my neck posture and rigidity. On the belief that chiropractors are the specialists to see for neck problems I went to see one who questioned me briefly on my problem. I stated there were moments of stiffness and a curious inability to look straight ahead if I was having my picture taken for a passport photo and the like. He had me lay on my stomach and proceeded to pop out a point on my neck as well as an area between shoulder blades. Within 24 hours I was in excruciating pain and had a permanent, life-altering case of cervical dystonia for which I receive Botox injections quarterly, prescriptions for Lorazepam, Percocet and Neurontin. Plus he exacerbated discs in my back that required an operation within several months and cause intermittent bouts of pain that before my visit I had none of. I tried to sue but the burden of proof lay with me proving these conditions were non-existent before. If I did not have a modest business that allows me to make my own hours, I would without question on disability. I try not to think about that visit that changed my life. A really qualified chiropractor would have taken x-rays first and likely not applied the same treatment.
Hi ,
I am a former sufferer of dystonia and want to offer you my support if you are still struggling with this awful disorder or another movement type of neurological disorder.
I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.
It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
on the health fundamentals that I have discovered that can make a huge difference on improving one’s health.
I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
28 countries and 48 states. Please feel free to call me if you would like to learn more about my work
and how I have been helping others.
There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.
For more information, please visit my website at https://www.dystoniahealthadvocate.com.
Thank you.
Steve Zarren
Fortunately, I am in a rare remission, where I have been 75% free of dystonia for the past 9 months. I cannot believe it is completely stress related – or “in my head” as some doctors would dismiss it-because I am under the most stressful period of my life without the effects of the dystonia returning. I will certainly bookmark your website but hope I never have to use it! Thank you.
I experienced something very similar but Chiro had me on my back and did a Linda Blair on mr sending shock thru my body down to my feet. I immediately had a headache that felt different from other headaches and within a few days my eyes started to close. I now have worked into apraxia and nothing helps. Not Botox, not partial muscle remova
, nothing. My life is stifled.
So sorry.
Here is my update. I hope something here is of some use to you.
Botox has not been that successful so when I could no longer afford the insurance covering it I stopped using it. Lorazepam works more on the building anxiety I feel when the dystonia takes over, more than it treats it specifically, and I get”sick” of the lorazepam can cause. Neurontin has side effects I can do without ( esp. when I temporarily developed IBS during an unfortunate financial period…likewise SSRIs, play havoc with IBS). Eventually, I developed chronic RLS that starts around midnight and can remain until dawn. I think the dystonia has indirectly brought that on. I forgot to mention the relative bliss I experienced from remission is no more, with the return of the cervical dystonia.
I have “played’ around with various opiates and find them to be the most effective; not only do they mitigate the discomfort but my anxiety level drops considerably. While I have been on a doctor prescribed opiate for 3 years without much increase in dosage over time, the most effective opiate I’ve tried is very rarely prescribed for pain issues -generally, for drug withdrawal issues- but it managed my dystonia, dystonia-related depression and RLS with the smallest dosage. If I was going to become a “middle-aged” drug abuser which is the new fear of the FDA, it would have happened by now. I simply have too many responsibilities to ever allow that to happen. I am hoping I can make a legitimate case, with another doctor, for prescribing the aforementioned “withdrawal” drug for my dystonia, etc.
Hmm…I don’t know how to edit my commentary so this addendum is to clarify a couple of things. I omitted the word ‘fatigue’ when describing lorazepam’s effect. Also, it is important to add that the trip to the chiropractor, who brought on the dystonia to full effect, took place in 2001, when I was 43.
As well, the doctor prescribed opiate is oxycodone hcl 5 mg. It does not contain any acetaminophen so less harmful to liver. Since it was prescribed- 3 or 4 years ago- I have increased the number of tablets for a month’s supply from 30 to 45. I work out daily in the morning and the first dosage works quickly to
relieve stiffness so I can get through the workout. Occasionally , a second pill ( or half) might be taken.
I heard dry-needling can be effective. It was not the case for me who tried it 3 times but it is worth a try for sufferers as it is not expensive and physical therapists are often licensed to use it.