Moving House and a couple of questions


Posted by Christine Grainger , Nov 09,2001,18:25   Archive
We have sold our house and are moving cities in a few weeks. I probably won't have internet access for a while and I will have a new e-mail address. Do I re register with my new e-mail or what?
Thank you all for posting such interesting information, some of it I find a bit scarey. Like the breathing thing, I hold my breath unconsciously, didn't realise it was part of this?
Can someone explain the squeezing thing? I have pressure pushing down on my forehead and get headaches and tired from holding my eyes open, but I don't know about squeezing, I don't think I have that.
Christine Grainger in New Zealand.



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Re: Moving House and a couple of questions

Re : Moving House and a couple of questions --- Christine Grainger
Posted by Sally - in - Idaho , Nov 09,2001,22:12 Top of Thread Archive
Hi Christine,

Good luck with the move. Be sure to come back to us as soon as you can. I'm not sure, but imagine you will have to re-register with a new e-mail. Hopefully, one of the moderators will guide you. I'm sure that Judy will.

I get headaches and my whole face is tired from holding my eyes open, particularly if I've had to do a little bit of driving or have tried to watch TV. I think it is just the strain on those muscles trying to do something that they can no longer do comfortably.

Sally in North Idaho who would love to go to New Zealand




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Re: Moving House and a couple of questions

Re : Moving House and a couple of questions --- Christine Grainger
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 10,2001,09:44 Top of Thread Archive
Christine, I too get headaches from trying to open my eyes when they don't want to open. I received my last Botox Oct. 8th and it lasted one month. Not a perfect month but I saw great improvement but this week they shut down. I told my husband yesterday that it would seem that if I just went with the flow, keep my eyes closed when they pulled shut that I would not have any pain. But my eyelids are pulling down and my forehead (which is nuumb) seems to be pulling up. I fell like my face is on one of those medieval (sp?) rack where the body is being stretched. This is what I think causes my headaches, so if you are having headaches, I am there with you. I understand.

My husband and I were having this discussion, he said that his bottom lids don't blink, only the top lids. I told him he is normal, I am not my lower lids squeeze up and force my eye closure. In fact I think that from my neck up is pulling upwards causing my mouth and nose to pull up. and then my eyes are pulling down and forehead up. Oh the joy of this disease.

Hang in there, there will be good days and bad days but you will make it. Keep us posted even if it is good or bad. We all are in the same boat.

Your BEB friend, Joyce Whitt in North Carolina which is on the eastern coast of the USA but I live in the central part of the state. You may e-mail me if you wish, just click on my name above (blue letters)




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Re: Moving House and a couple of questions

Re : Moving House and a couple of questions --- Christine Grainger
Posted by Carol Brown , Nov 10,2001,19:28 Top of Thread Archive
Hi Christine,

I had myectomy surgery on the upper lids about three years ago, Before that, I experienced extensive squeezing and headaches. I was constantly struggling to hold my eyes open. After the surgery, I still found myself wanting to raise my eyebrows up to help keep my eyes open. It was out of habit though because the surgery did help. My doc advised to to make a conscience effort not to raise my eyebrows. He also suggested relaxation techniques which helped. The squeezing comes from the muscles contracting.

Carol from Naselle whose daughter was a foreign exchange student in New Zealand many years ago.




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Re: Moving House and a couple of questions

Re : Moving House and a couple of questions --- Christine Grainger
Posted by Carol Brown , Nov 10,2001,19:29 Top of Thread Archive
Hi Christine,

I had myectomy surgery on the upper lids about three years ago, Before that, I experienced extensive squeezing and headaches. I was constantly struggling to hold my eyes open. After the surgery, I still found myself wanting to raise my eyebrows up to help keep my eyes open. It was out of habit though because the surgery did help. My doc advised to to make a conscience effort not to raise my eyebrows. He also suggested relaxation techniques which helped. The squeezing comes from the muscles contracting.

Carol from Naselle whose daughter was a foreign exchange student in New Zealand many years ago.




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Re: Moving House and a couple of questions

Re : Moving House and a couple of questions --- Christine Grainger
Posted by Christel-California , Nov 10,2001,22:08 Top of Thread Archive
Hi Christine, good luck with your move, moving is so stressful, just what we need with this disorder.
I recently changed e-mail address and all I did was let Bob Campbell know, I did not re-register.

Christel in Ca. who spent a few hours in New Zealand many moons ago and who just came back from Las Vegas today, where they have money-eating machines.




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Re: Moving House and a couple of questions

Re : Moving House and a couple of questions --- Christine Grainger
Posted by Shirley-Arkansas-USA , Nov 11,2001,10:02 Top of Thread Archive
Hi Christine,
I don't envy your moving. What a stressor!
You should be able to change your email address by going to "modify registration" which you can find if you click on "Log In". Log in like you normally do and when that is completed a window will pop up giving you options as to whether you want to go to the bulletin board, etc. I believe that it says "welcome back". In the middle of this window (It is blue on my screen) should be a line that reads "Modify Registration". Click on this and make the changes that you would like in the correct blanks. You can change your email address here and your "description". If you have any problems with this, then just check with our webmaster, Bob Campbell.

If you do decide to re-register instead of modifying your registration, you will need to email Bob and let him know so that he can delete your old information.
You could go ahead and see if you can find the Modify Registration window and see what it says and just don't modify anything at this time and then if you have any questions, post back.

On your question about squeezing-when I refer to squeezing, I am just talking about my eyes squeezing tightly together. This is the "spasm" part of Blepharospasm. In my way of thinking, "squeezing" is a better term for this forceful closure of the eyes rather than spasm. Other people may have fluttering of the lids or increased blinking or closure of the lids without much squeezing. We are all a little different with the symptoms.

I've also heard or read that if your symptoms don't progress within the first two to three years that they are not likely to later on. Where did I hear that from gang?

Shirley in Arkansas with BEB/Apraxia

--modified by Shirley-Arkansas-USA at Sun, Nov 11, 2001, 10:13:20

--modified by Shirley-Arkansas-USA at Sun, Nov 11, 2001, 10:15:58




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Re: Moving House and a couple of questions

Re : Re: Moving House and a couple of questions --- Shirley-Arkansas-USA
Posted by Carol Brown , Nov 11,2001,10:12 Top of Thread Archive
Hi Shirley,

What is apraxia? I've never heard of it. I had a lot of squeezing also before my myectomy surgery.

No, I haven't heard that about if your symptons don't progress after the first 2 or 3 years, they won't. Gosh, I hope they're right! I have meige along with the blephro. Is it the same as apraxia?




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Re: Apraxia

Re : Re: Moving House and a couple of questions --- Carol Brown
Posted by Shirley-Arkansas-USA , Nov 11,2001,10:27 Top of Thread Archive
Hi Carol,
I've posted a link from the BEBRF Main Pages that will tell you about Apraxia. It is when you have difficulty opening your eyes whether there is squeezing going on or not. My eyes just want to remain closed. Before I had my upper myectomy, I really struggled to get my eyes open. I would move my head around and make all kinds of faces just trying to get my eyes open. Sometimes, it would take 30 seconds or so before I could get them to open and then they would immediately close again. This is vastly improved since my surgery but is still there and is my biggest problem and one of the more difficult aspects of BEB to treat.
Meige is not the same thing as Apraxia.

http://www.blepharospasm.org/blephar4.html#A1


Shirley in Arkansas where we are having a beautiful fall day and leaves are fluttering down all around.




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Re: Moving House and a couple of questions

Re : Re: Moving House and a couple of questions --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Nov 11,2001,15:21 Top of Thread Archive
Hi Shirley,

We've been given that information "not likely to progress ...." from various research, but my neurologist has also told me that. He also says that if one's dystonia begins with blepharospasm/Meige, it is not likely to progress to other areas; while if it begins with other dystonias, there is a high percentage of progression to include BEB.

Sally in North Idhao BEB/Meige and whatever else hits each day!




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