need advice, comfort, suggestions


Posted by S. LaShelle Fisher , May 04,2002,02:08   Archive
I will try to relate my experience because I feel the need for advice and sharing from some of you who are suffering and have experienced more of this mysterious condition..
My symptoms began two years ago when my eyes became hyper sensitive to the slightest breeze or sunlight. A nurse friend said that it sounded like an allergy so I went to the doctor and received eye drops that didn't help. The symptoms progressed to "blinking" then in a while I was "winking" with the cheeks involved (mostly the right side of my face). The spasms became worse and I was sent to a psychologist who declared that the "Paxil" I had been taking for several months (given to me by a doctor, before the eye sensitivity, in another area we had moved from)was the cause. She said that the spasms were a typical Paxil reaction for the predisposed, and that it might go away after I discontinued the drug. I did discontinue the Paxil but my symptoms only worsened, adding a facial "grimice" (sort of false smile spasm)and the eyes became worse, closing as you all know about.I waited much too long before seeking more help as I believed the condition was only temporary. It wasn't.

About a month ago I was diagnosed with Blepharospasm,and Botox shots recommended, at an eye clinic. On TV they showed a "Botox party" for wrinkle removal, where they put an ice bag on the face to freeze the area, then injected two or three small shots, with no pain or strain.
I did not get the comfort freeze treatment. After the doctor felt my face and found that the contractions went way down into my jaws (he made a comment like "wow"), I lay in the chair and desperately suffered most uncomfortable multiple punctures (I heard him say 152, and I confirmed it later). He left the room once to "mix a new batch", and he used three syringes full. The doctor told me I have an extreem case of this condition and he dared not give me shots in all the affected areas at once for fear I could not chew my food.
The first day my face really ached, and the next day I was bruised to the extent that it looked like someone had beaten me. I had hoped I would get some immediate relief for the twitching but I did not and I had the added pain of the treatment. But each day I improved a little (longest week of my life), noticing that my eyes were not squeezing as tightly, until a week later my eyes were open, but my lower face was still spasming.
I returned for my weeks visit and he was going to give me some more Botox in the lower face but it had not been approved by my primary care. Then the shocker. The eye doctor said he used two bottles full, which would have to be repeated in three or so months, and he thinks Botox is not my solution. He wrote a note to the primary care that I might go to UCLA medical and see what they say.
It is now two weeks since the injections, my eyes are normal, but I do not know what the future holds. In a word I am scared. It was even mentioned that the nerves in the sides of my face could be cut.
Does anyone have any ideas or similiar experience?
Thanks in advance for any help, advice, comfort, or?
I am LaShelle,66 years of age, in Lancaster, California




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Re: need advice, comfort, suggestions

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Ann Doyle , May 04,2002,07:45 Top of Thread Archive
LaShelle, Your story sounds just like mine until the doctor part. I would go to a neurologist at a movement disorder clinic who has been treating bleph patients with botox for awhile.
My condition keeps getting worse. I now have it in my throat. Until recently the max amount given was 100 units. My doctor gives them in 2o places. It spreads out. I heard that they can now give 150 but I'll bet my dr. won't give that much. They are afraid you will become immune to Botox and then have to go to Botox B that usually doesn't work as well. They also usually only give them every 3 months for the same reason.
Did you get some literature from the Bleph org. E-mail
bebrf@ih2000.net Web site www.blepharospasm.org/
They will send you all kinds of free literature and help. This bulletin board is the best help of all.
My husband has to drive 3 hours to get my shots--one way. It's an all day adventure. I was lucky enough to find a friend in town .The bebrf sent me the name and phone number of someone in my state and she gave me the phone number of someone in my ciy.
The doctor giving the Botox has a lot to do with it The fact that you have it in your jaw (I do too) may mean you have Meige syndrome. Pretty common.
Please contact bleph, then the people and find a good doctor. I have never heard of more than 24 shots in the face before. Ann Doyle



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Re: need advice, comfort, suggestions

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by denise mckew , May 04,2002,08:11 Top of Thread Archive
LaShelle,

You sound like many of us. I'm sorry to hear your struggling with BEB.

Are you seeing a nuerologist? If you can get to UCLA, ask to see a nuerologist who specializes in motion disorders as a second opinion. It is really important to find a docotr who has a lot of knowledge about BEB. As far as I know Botox is the best treatment for us, if done correctly.

As for the pain in your face, do you think it is because of all the spasming, or do you think it's really nerve pain? I have trigeminal nerve nueralgia that does get worse after the shots. That last about 3 weeks for me. Cutting the nerves to your face would be a last option. I have had the nueralgia for almost a year now, and no one has mentioned surgery. I use Lidoderm patches for the nerve pain. They are like bandaids that I put on at night and the lidocaine gel numbs the nerves enough for me to rest.

152 injections or did he mean 152 mg of Botox? No wonder you are bruised. Botox takes approx 2 weeks before the full effects are realized. So make sure you give it time before getting more shots.

Hang in there and take care of yourself. Get to a specialist - which you should be able to find through the BEB main menu. Sign up for the news letter too. We're all in this together.

Take Care,
Denise




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Re: need advice, comfort, suggestions/LaShelle

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), May 04,2002,08:39 Top of Thread Archive
This seems to be yet another blatant example of a doctor giving you a drug with no information on the dystonic reactions it could cause in you. It's good that the second one could immediately recognize both your symptoms and the cause. I don't know what you're supposed to do about this.



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Re: need advice, comfort, suggestions

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by June in Toronto (June Floyd,June in Toronto), May 04,2002,09:02 Top of Thread Archive
Welcome to the bulletin board, LaShelle - what a beautiful name you have. I'm so sorry you are going through all this, it certainly is scary and painful, but we are here to comfort each other and help in whatever way we can.

Being bruised after the injections is somewhat normal - remember not to take blood thinners (vit. E, aspirin) for about a week before. Some people use EMLA cream, a prescription cream to help with the pain of the injections. It is put on in layers (avoiding the eye) starting about 2 hours before the injections and covered with saran wrap. Others who have used this method will comment on it I'm sure - I've never used it.

You appear to have had 152 injections with 3 full vials of botox which (at 100 units per vial) = 300 units. I wonder how many of this you got for the beb around the eyes? It sounds like a visit to UCLA might be necessary. Do, as another posted, get all the information you can on the subject - talk to your doctor about it fully - some people keep a journal so they can remember all their symptoms on a daily basis.

Keep your chin up and keepposting - we care.

June in Toronto (beb/meige)




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Re: need advice, comfort, suggestions

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Linda in CA (Linda Tuttle,Linda in CA), May 04,2002,09:10 Top of Thread Archive
Welcome, LaShelle, you have come to the right place for support and information. BEB/Meige seems to develop differently in each person, yet as you review some of the BEB bb postings, you will find many similarities. It took me 4 years of searching to find out what was happenig with me and most likely would still not know if it wasn't for the BEBRF and the BB. I printed off info from the BEBRF and took it in to my PCP, who referred me to a local neurologist. The local neuro doctor has been wonderful, but after talking to an opthomologist who specializes in BEB, I requested a referral to UCLA neurology clinic. The opthomolgist explained that when someone has developed meige and other additional symptoms, it is best to get a neurological work up to know exactly what nerves and muscles are involved. He felt the best place to do that is at a "teaching hospital." For me, the closest place is UCLA (and which my insurance covers). I am in that process right now. It is my understanding from UCLA that Dr. Vanek is the movement disorder specialist who is specializing in BEB/Meige.
Be sure to read through the old postings on the BB, there is a wealth of helpful information regarding ways to deal with light sensitivity, Botox, medications, herbs, stress, and finding ways to cope. You have found a place to receive support and information. It makes the journey easier to know that others have traveled down similar paths.
You are welcome to contact me through email if you have additional questions. Linda in Santa Maria, CA



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Re: need advice, comfort, suggestions

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Lynn Yarbrough , May 04,2002,11:32 Top of Thread Archive
Hi, LaShelle,

Sounds like you are carrying a heavy burden right now. Let me suggest that you go to one of the Univ. Med. Centers to get the latest info on diagnostic procedures and treatment. I'm not familiar with who's who at UCLA, but I can recommend Dr. Peter Quiros at USC/Doheny Eye Inst., who is my Doctor for this condition.

You need a very accurate diagnosis, because what you have described has features of BEB, MEIGE, and HemiFacial Syndrome (HFS). HFS is treated quite differently from the others, and is curable, unlike the others.

I am shocked that your Dr. gave you so many shots. 150+ is WAY off the charts, IMHO.

I am the Southern CA Rep for BEBRF, and while I will be out of town this coming week, after May 12 feel free to call me at 760-360-4006.
(I live in Palm Desert.)

--- Lynn




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Re: need advice, comfort, suggestions

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Sally - in - Idaho , May 04,2002,14:21 Top of Thread Archive
Hi LaShelle,

You do have a basketful of symptoms to deal with and I can understand your being scared and uncertain what to do. I think that the visit to UCLA sounds like a good first step for a second opinion.

You say that "It's been two weeks since the injections, my eyes are normal" ... that's great if you actually mean they are staying open, not spasming or painful. That is the goal of Botox.

Welcome to this BB. Come often and feel free to ask, comment, discuss nearly anything (politics and religion are out, but what do they have to do with BEB anyway!). There is always someone around who will listen. We have soft shoulders when you need to cry and vent your frustrations. All we ask is a sense of humor. That will get you through many tough spots. We like to have a little fun and do some "partying" now and then.

Take care and keep us posted.

Sally in North Idaho where it feels like snow today. My husband and grand-daughter are running the Bloomsday 7.5 mile race tomorrow and will likely freeze.




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Re: need advice, comfort, suggestions

Re : need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Delaine Inman , May 04,2002,17:41 Top of Thread Archive
Welcome to the BB and Bless your heart! This is not the first time I've heard of Paxil and other antidepressants triggering BEB/Meige/and other dystonias. That makes me really angry. What you describe needs attention from a movement disorder specialist who knows how to treat BEB/Meige and whatever else could be going on with you. I've been the eye clinic, eye/neuro clinic and the movement disorder clinic neuro clinic route and the last one has been the best for me. Many movement disorder specialist use EMGs to find exactly where to place the Botox when the face, throat and vocal cords are involved. Botox migrates and nerves sprout so you need an expert who knows how to use the least amount of Botox in just the right place. Bruising, ptosis, and pain will be miminal to zero if you are prepared properly before, during and after injections. The expertise of the doctor giving the injection is a must to prevent all these things. Ice before and after, applying pressure, EMLA cream 2 hours before, avoiding the aspirin and Vit E as mentioned all will prevent you unnecessary problems. Learning relaxation breathing and visualization can also help relax you and decrease the discomfort and bleeding. Good luck and keep posting.
Delaine, the TN state Rep



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Re: need advice, comfort, suggestions

Re : Re: need advice, comfort, suggestions --- Delaine Inman
Posted by S. LaShelle Fisher , May 04,2002,22:20 Top of Thread Archive
Thank you for all the good survival advice. I wil pay attention and use it if I have a chance in the future. I wonder why the patient is not given any such information prior to the treatment. The amount of suffering could be eliminated and the success rate increased with a little more medical counseling. I will be well armed with printouts of these messages when I go to UCLA.
Thank you
Love,
LaShelle



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Re: need advice, comfort, suggestions

Re : Re: need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Ann Doyle , May 05,2002,04:41 Top of Thread Archive
My newspaper said that 1/3 of people going to the doctor now, go with computer printouts. There is so much knowledge out there , one doctor can't keep up. Please keep in touch and let us know how things turn out. Ann Doyle



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Re: need advice, comfort, suggestions

Re : Re: need advice, comfort, suggestions --- Ann Doyle
Posted by June in Toronto (June Floyd,June in Toronto), May 05,2002,08:25 Top of Thread Archive
Most doctors don't believe what is found on the web either (according to what I've heard) - BUT what we say is OK - OK?:-)

June in Toronto




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Re: need advice, comfort, suggestions

Re : Re: need advice, comfort, suggestions --- June in Toronto
Posted by Ann Doyle , May 05,2002,08:38 Top of Thread Archive
That sure is true, June. In fact we shouldn't believe everything either but if you can find something by a Medical Association, it's hard to refute. My GP who helps me here in town and is learning with me about bleph , listens and then make up his own mind because he has a lot of other info to add to it. I don't tell my movement disorder neuologist much. Just how it is with me personally. Ann Doyle



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Re: need advice, comfort, suggestions/LaShelle

Re : Re: need advice, comfort, suggestions --- S. LaShelle Fisher
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), May 05,2002,06:56 Top of Thread Archive
LaShelle, most of us learned all these survival techniques right on this bulletin board; that's how valuable it is.



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