Forum


donatenew

Welcome, Guest
Username: Password: Remember me

TOPIC: Dystonic Spasms- seizures

Dystonic Spasms- seizures 3 years 7 months ago #3122

  • Ironside13
  • Ironside13's Avatar
  • OFFLINE
  • Fresh Boarder
  • Posts: 1
  • Karma: 0
Hi my name is Lesley and I've been diagnosed with Dystonia since 1982.
Although I've had Dystonia since I was 7yrs old, from 7yrs to 32yrs old I only had Dystonia in my left foot and voicebox.
Then in 1979 aged 32 I started movements in my neck torticollis and back and in 1982 I was finally diagnosed with generalised Dystonia.
6 years ago I started moving from my truck, I get a lot of pain from spasms.
I believe my Dystonia is hereditary as my mother, uncle,both deceased had neck and voicebox problems and my 2 daughters have been diagnosed with having it.
It is also thought that my grandmother and her mother may have had it too as both had neck movements and my grandmother was said to have had Parkinson's and at that time people weren't diagnosed with Dystonia.

I have been in the Dystonia society since 1983, and I think I know all the names of the different types of dystonia's.
BUT........I have never read anything about Dystonic spasms that take the form of brain seizure/absences. My youngest daughter now 41 was diagnosed with having left sided Dystonia and these Dystonic spasms,this was in 2005 by her neurologist, and her psychiatrist thought at first they may be complex partial seizures but has recently said he thinks the neurologist diagnosis was correct.

Has anyone come across this or does anyone know where I can go to do research?
Thank you.
Ironside13
The administrator has disabled public write access.

Dystonic Spasms- seizures 1 year 3 months ago #4060

  • Supergran
  • Supergran's Avatar
  • OFFLINE
  • Platinum Boarder
  • Posts: 261
  • Thank you received: 15
  • Karma: 4
Hi I am inspired by your story and would love to know more details about the seizures. I have severe generalized dystonia and at the moment am quite distressed. I have for a period of time now have felt disorientated and confused following severe attacks of dystonia which have meant a trip to hospital to have assistance for my breathing which stops completely during spasms.This means if the spasm is a long one my whole body from head to toe goes into seizure type behaviours and if it continues to hold I get added to this flashing lights behind my eyes before blacking out completely. This has been going on for some time now but a week or so ago I had a really bad attack and all that I have mentioned happened but for the first time I have missing periods of time I have no memory at all for periods of time while I was in hospital. I did have a bad time of it in hospital with the attending doctor interested only in did I take drugs and the presenting issue was ignored...asthma and chest infection bringing on a dystonia attack. Bloods were taken from me no checks were done on my chest area and I am left emotionally traumatised. I feel violated by the question of street drugs and the taking of blood without consent or discussion etc

I like you am searching for more info online and there is very little available.

All the best and a wee update from yourself would be good if you feel you could share.

Thanking you
Christine
The administrator has disabled public write access.

Dystonic Spasms- seizures 1 year 2 months ago #4077

  • Supergran
  • Supergran's Avatar
  • OFFLINE
  • Platinum Boarder
  • Posts: 261
  • Thank you received: 15
  • Karma: 4
wee update on the seizure situation!......There is a whole load of stuff around seizures and dystonia on the epilepsy site. It is called non epileptic seizures and it appears to be relatively common. The other thing is that I have just been discharged from hospital...admitted for pneumonia and pleurisy. While I was in I took a number of these seizure type things and have been told that severe pain that is difficult to manage could be the cause. I am to see the Neurologist about this again at my next appointment to get his view but my presentation during these times is definitely seizure type so watch this space! I am also going to the pain clinic to have it looked at from a pain perspective.
The administrator has disabled public write access.
Time to create page: 0.098 seconds