|
|
|
|||
|
| Eye tests with blepharospasm and cervical dystonia |  | ||
| Archive | |||
|
Posted by: mpniven ® 08/22/2012, 08:00:35 |
I wonder how other people manage their eye test when they have both blepharospasm and cervical dystonia. My head moves forward a lot and my eyes close. I wear varifocals and need to get new glasses. Are there any tips for managing the eye test when your head spasms? |
| | | | Current page |
| Replies to this message |
| Re: Eye tests with blepharospasm and cervical dystonia | | ||
| Re: Eye tests with blepharospasm and cervical dystonia -- mpniven | Top of thread | Archive | |
|
Posted by: dana15 ® 08/22/2012, 22:31:08 |
I think you would want to get the eye test at a good time in your injection cycle. Do you get successful injections for both blepharospasm & CD? (If you wish, you can also browse the Dystonia BB, clickable at the bottom of this page, for CD & Botox issues, & possibly post your question there, too!) Modified by dana15 at Wed, Aug 22, 2012, 22:35:30 |
| | | | Where am I? Original message Top of thread Current page |
| Re: Eye tests with blepharospasm and cervical dystonia | | ||
| Re: Re: Eye tests with blepharospasm and cervical dystonia -- dana15 | Top of thread | Archive | |
|
Posted by: mpniven ® 08/24/2012, 06:00:28 |
I first got blepharospasm and had dyasport botox injections twice which made me very ill for up to a month. So I stopped the injections. However CD started a few years later and I have been having Xeomin injections for it with no success. I got up to 80 units and had severe swallowing problems so the consultant started me back at 40 units which has not done anything for my neck. I have not dared to have my eyes done yet. So I do not have a good time in the injection cycle at all. I am wondering how an accurate eye test can be done, specially for varifocals. So any tips would be helpful. I have found that the professionals who do the eye tests have not come across blepharospasm, never mind CD and I have had to tell them what it is. ( I am in UK) |
| | | | Where am I? Original message Top of thread Current page |
| Re: Eye tests with blepharospasm and cervical dystonia. UK | | ||
| Re: Re: Eye tests with blepharospasm and cervical dystonia -- mpniven | Top of thread | Archive | |
|
Posted by: dana15 ® 08/24/2012, 13:54:51 |
BEBRF Office
Mailing address: Benign Essential Blepharospasm Research Foundation P.O. Box 12468 Beaumont, TX 77726-2468 USA Tel: (409) 832-0788
You can contact/email the BEBRF office to ask for an information packet for both yourself & also your eye exam/eyeglass practitioner. Here in USA, both my ophthalmologist (M.D.) & also my optometrist know about blepharospasm, & have ways & means of conducting an eye exam for glasses, no matter where you are in your injection cycle, or lack of one. They may start you out with a preservative-free lubricating eye drop, if you don't already use some. For the intra-ocular eye pressure part for glaucoma test, they will simply hold your eyelids open with their fingertips. For the refraction part, where they test your visual acuity with the wall chart & hand-held reading chart (for bifocals or trifocals/progressives or, as you say, varifocals), they can pretty much work with you until they get a useful measurement. My optometrist did so at a bad time during my injection cycle, for my progressive (no-line)lenses, but my exam was successful, or at least reasonably adequate. She was concerned that progressives may inhibit my depth perception when taking stairs or curbs, as BEB is a movement disorder, but it has not been a problem. I had the same experience as you with Xeomin, except for the swallow reflex. The Xeomin did not work at all for my BEB during 2 different cycles. I will return to Botox. There are UK folks here, & Dysport folks, & CD folks, who may be able to jump in here. Below is a link to UK support groups, not sure if the contact info is current, but reps are great folks with local resources.
Related link: http://www.blepharospasm.org/blepharospasm-support-groups.html#ENG Modified by dana15 at Sun, Aug 26, 2012, 09:39:38 |
| | | | Where am I? Original message Top of thread Current page |
| Re: Eye tests with blepharospasm and cervical dystonia. UK | | ||
| Re: Re: Eye tests with blepharospasm and cervical dystonia. UK -- dana15 | Top of thread | Archive | |
|
Posted by: liz in uk ® 08/26/2012, 05:58:21 |
Just confirming that the contact details for the UK support groups in the links above are still current. Liz in UK |
| | | | Where am I? Original message Top of thread Current page |
| Re: Eye tests with blepharospasm and cervical dystonia. UK | | ||
| Re: Re: Eye tests with blepharospasm and cervical dystonia. UK -- liz in uk | Top of thread | Archive | |
|
Posted by: dana15 ® 08/26/2012, 09:38:17 |
Thank you, Liz. Also, isn't there a highly respected female doctor who treats blepharospasm & other dystonias at the National Hospital for Neurology & Neurosurgery (NHNN)? Her first name may be Janet? |
| | | | Where am I? Original message Top of thread Current page |
| Re: Eye tests with blepharospasm and cervical dystonia. UK | | ||
| Re: Re: Eye tests with blepharospasm and cervical dystonia. UK -- dana15 | Top of thread | Archive | |
|
Posted by: pdb ® 08/26/2012, 15:17:36 |
Between 2004 and 2006 I used to get shots from Dr. Carla Cordivari NHNN/UCL. I liked her a lot. Peter |
| | | | Where am I? Original message Top of thread Current page |
| Re: Eye tests with blepharospasm and cervical dystonia | | ||
| Re: Eye tests with blepharospasm and cervical dystonia -- mpniven | Top of thread | Archive | |
|
Posted by: lightwave ® 08/26/2012, 14:55:44 |
It is impossible for me to get my eyes dialated. Instead, I go to an opthalmologist who uses the Optomap (which serves the same purpose as dialation). A visual field test is also out of the question. Something about those little flashing lights just puts my head tremor and CD in overdrive. My head jerks so hard, I can't even keep my eyes on the viewer. I always have the refraction done before any of the tests or Optomap. My ophthalmologist usually has a bright lamp on during refraction but she turns it off for me because she knows it causes problems. She also gives me extra time during refraction and will frequently repeat the choices of the best vision over and over because she knows I blink a lot. Good luck on your eye exam. Glynda in Houston, TX |
| | | | Where am I? Original message Top of thread Current page |
| Re: Eye tests with blepharospasm and cervical dystonia | | ||
| Re: Re: Eye tests with blepharospasm and cervical dystonia -- lightwave | Top of thread | Archive | |
|
Posted by: DianeLDL ® 08/26/2012, 17:35:26 |
Good subject as I will be getting my eyes tested in a month which will be about week four after my Botox for BEB, Meige, and cervical dystonia. I also have difficulty with the lights when they throw the eye chart on the wall. The background lighting causes big problems with the spasms. My ophtomologist who is a cornea specialist and understands BEB also takes time to dim the lights for me. But they do dilate my eyes which I have to keep closed when in the waiting room as the light drives me crazy. It is always difficult when the flip the lenses and ask whether one is better than the other. Strangely, after my BEB and Meige diagnosis before beginning Botox, the eye exam revealed that my astigmatism that I had had for years had disappeared. It was no wonder that I was having difficulty reading and driving with my glasses as they were totally the wrong prescription. We will see what happens with my next exam. Thanks for the suggestions. Diane |
| | | | Where am I? Original message Top of thread Current page |
