Cervical Dystonia - Dystonic Tremor

Comment by 40K in UK on June 6, 2010 at 5:41pm

Hi Michelle,

I assume that you are aware of the UK Dystonia Society and their support groups – one of which covers Hull & East Riding – Contact details for a lady called Thelma can be found on this link http://www.dystonia.org.uk/ and then click on “Support services”.

There is also another UK Dystonia organisation called ADDER for the North East.

When my wife was diagnosed with Spasmodic Torticollis (Cervical Dystonia) it took me some time to find these UK sites.

Hope this helps.

Ian

Comment by 40K in UK on June 6, 2010 at 6:39pm

Hi Michelle,

A bit more information for you

Regards oral medications can I propose that you look at the following web sites which are for the two USA “Cervical Dystonia” (Spasmodic Torticollis) Support Organisations.

http://www.torticollis.org/
Click on “Treatments” and then “medications”

The following sites are more detailed with some good info on oral medications and avoidable medications.

http://www.spasmodictorticollis.org/media/pdf/Broch-Meds.pdf

http://www.spasmodictorticollis.org/info/treatment.cfm?id=2&sub=10

From this link you have the following pages:

• What is ST?
• Living with ST
• Treatment Center
• Initial Consultation
• Oral Medications
• Avoidable Medication List
• Let's Talk About Drugs
• Oral Medications
• Oral Medications and Dystonia
• Oral Medications for Cervical Dystonia
• What About Those Oral Meds?
• Botulinum Toxins

Once again – hope this helps. From experience can I recommend (if you are not doing it already) that you keep a record of treatments (Botox (type (A or B), amounts and where) and medications (and amount)) that you have been and are receiving for future reference.

Finally, I noted that you have raised your “Cervical Dystonia - Dystonic Tremors” as a “BLOG post”. It may be advisable to raise it as a DISCUSSION under the “Dystonia Neuro Movement Disorder GROUP forum”.

Ian

Comment by dystonia10 on June 10, 2010 at 12:41pm

Hi, I am Marge, 69, and I have cervical dystonia and essential tremor which is the same as spasmodictorticollis.
I have had this disease for 11 years, but I feel much longer remembering symptoms. Every country and even every doctor has a different way of treating this disease. I belong to the botox with the EMG machine in my neck to prevent my neck from touching my left shoulder. I have also been taking clonazapan a generic of Klonopin for the whole time diagnosed, 2 pills per day. This helps with the shaking. You have to find what works best for you. I will remember you in my prayers.

Comment