Blepharospasm Bulletin Board

How successful is botox for you?
  Archive
Posted by: Kathleen
02/20/2004, 14:17:38


After over 2 years and many misdiagnoses, including 2 eye surgeries at supposedly one of the best medical centers in the country, I was finally diagnosed with blepharospasm in October. I tried Neurontin with no success, so I had the first botox injections on December 3, with relief within a few days. Unfortunately, that relief lasted less than 6 weeks. Since the injections can only be done every 3 months, I've now had 6 more weeks of severe spasming. I can relate to those who say they get depressed. I was only 44 years old when I started having the spasms, living with this for next 30 to 40 years is mind-boggling and it is hard to stay upbeat. For those of you who have been having the botox injections for some time, did you find that they lasted longer each time? How long do you generally obtain relief from each set of injections? Have you find any other things that provide relief? Sorry this is so long, but I appreciate any info you can give me. I just discovered this site / BB and it is comforting to know that there is someone else out there who understands.


Modified by Kathleen at Fri, Feb 20, 2004, 15:07:14

| |   Current page

Replies to this message


Re: How successful is botox for you?
Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: June in Toronto
02/20/2004, 15:10:18


I've had beb/meige for 9 years now. The neuro started me off at a low dosage for about 18 injection sites and gradually increased the units over a couple of years. I've also tried medication but nothing helped. I've been at 90 units of Botox for several years now and go 4-6 months between treatments - this time around its been 5 months so far and I have booked the next set for mid March. I should have gone next week but my life (in other areas) is in a bit of turmoil right now soI've had to delayit (I'll suffer more because of this delay). So, for me, Botox works quite well - although I do suffer with about a month of side effects after the injections. These vary but usually include a lot of pain (liked barbed wire in my eyes), super dry even though I lubricate ALL the time (365 days/year and take eye rests) and even extra during that time, headaches, blurred vision (sometimes double vision in one or both eyes), black eyes on occasion, sinus on occasion (more often in the early days but not so much now), headaches and I'm sure a few others that I can't think of right now.

I wonder how many units of botox you received the first time around - perhaps the doctor will increase it slightly on subsequent treatments, as seems to be the norm? I wish you good luck in figuring it all out. Best wishes

June in Toronto, Canada that is.




| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- June in Toronto Top of thread Archive
Posted by: Kathleen
02/20/2004, 15:45:22


He did tell me that he started with a very low dose, since he was worried about me developing antibodies to the botulism. I did have significant ptosis of one eye for a couple weeks, even with the low dose. It's helpful to hear that it has been pretty successful for you for several years. I also have the barbed wire eye pain at times and wasn't sure if it was related to the beb or not. Thank you. Over the 2 years it took for me to get a diagnosis I truly did think I was going crazy sometimes.



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: hkang
02/20/2004, 17:04:03


My name is Hyeyoung Kang and I am living in Korea.
Like you, my beb was started when I was 44 years old, March of the last year. I left my job in July due to beb.
I had my 4th botox injection last week and it is okay. I mean I can open my eyes, but not all the times.
It last 2 to 3 months for me. I think it depends on the doctor`s skill.
I am the youngest patient for my doc.
Now I am taking herb medicine, but I have to take 3 months at least.

Hyeyoung Kang from Korea




| | Where am I? Original message Top of thread Current page
Re: Herbs/Hyeyoung Kang
Re: Re: How successful is botox for you? -- hkang Top of thread Archive
Posted by: June in Toronto
02/21/2004, 05:42:05


Hi Hyeyoung - if you find the herbs help you in a few months I hope you will share what they are and what they do with us. I take Bilberry for light sensitivty - it took 2 years before it really helped me and even now I still have sensitivity to light, but much less with that herb. Its very hard to be as young as you with this disease - at least I'm an old timer and that doesn't seem to make it so bad. Take care

June in Toronto, Canada




| | Where am I? Original message Top of thread Current page
Re: Herbs/June
Re: Re: Herbs/Hyeyoung Kang -- June in Toronto Top of thread Archive
Posted by: hkang
02/21/2004, 16:55:18


Hi June, I will share everything with all of you.
This is the hardest time in my life. The hardest part is that I am dependent on my mom. I feel very sorry for her.

Hyeyoung Kang from Kore and who is trying to many things to improve my eye condition




| | Where am I? Original message Top of thread Current page
Hyeyoung Kang
Re: Re: Herbs/June -- hkang Top of thread Archive
Posted by: June in Toronto
02/22/2004, 06:31:09


Being a mother myself, Hyeyoung, know I would do anything to help my children (our youngest is 36), and I'm sure your mother is doing just that. Once your health problems get stabilized and you understand how to help yourself (with botox, medication, herbs, rest, learning and prayer) you will be able to do more for yourself. Keep your chin up and hang in there.

June in Toronto, Canada who prays for a cure for us all.




| | Where am I? Original message Top of thread Current page
Re: Hyeyoung Kang
Re: Hyeyoung Kang -- June in Toronto Top of thread Archive
Posted by: Ann Doyle
02/22/2004, 16:24:27


One of the hardest lessons in life is to let others help us. It makes us feel good to help someone else. Now it is time for you to let someone else feel good.
My sister was always doing for others. When she was dying with Cancer, she said ; It is so hard to ask other people to help me. I quoted Kubler-Ross who wrote a book on death and dying. "Do you think it is more important to know how to clean a window or to know how to receive?"
Sometimes it may be difficult for your mom but she will never regret it. I am a mother of 7 children and am so pleased when my children ask for help. I am now 73 years old. When they were all real little it did seem too much sometimes but just let your mom know that you love her. That is a hard thing for a man to say but it sure means a lot to a mom. Ann Doyle



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: Lyn Down Under
02/20/2004, 17:24:24


Hi Kathleen

Everybody is different when it comes to the amount of time the Botox lasts. I have been having it for about 14 years. It starts to wear off at about 6-8 weeks and I like to have it at 10 weeks. I have a wonderful doctor who is very careful about the placement of the shots and he lets me have it when I need it unlike some doctors who do it on a clinic basis at times to suit themselves and not the patient. As to antibodies, I have not developed any yet to the best of my knowledge. To my mind, there is no point in having it at any other time than when you need it. To let it wear off and have to suffer spasms etc while waiting for an appointment only causes even more stress.

Unlike when I started having Botox, there are now many more doctors using it so it pays to "shop around" for a doctor that will work with you and not against you.

Lyn




| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: Mary, upstate NY
02/20/2004, 20:35:31


Hello Kathleen, and welcome to the Bulletin Board. You will get more information here than anyplace else! Botox works for me. I've been having injections for about 10 years or so. I had a limited myectomy about 4 years ago, and still get the shots, but at a lower dose. I get 50 units total every 8 weeks, exactly! I haven't shown any immunity, and do not have any side-effects. If I keep on this schedule (appts. planned way ahead for 8 weeks ) I seem to do quite well. I have a strong sensitivity to the sun and/or wind, and wear wraparound sunglasses over my regular glasses when I'm outside. And I take .5 mg. of clonazepam (generic Klonopin ) 3 X per day. So I'm finally, sort of, on a level playing field. Took me 10 doctors and 8 years to get a diagnosis, not unusual in cases of BEB. My doctor is a neurologist, and that's what you should look for! Best of luck to you! Mary



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- Mary, upstate NY Top of thread Archive
Posted by: Karen
02/20/2004, 21:25:48


Mary, If I may ask, how does the Clonazepam help with the BEB? Is it to calm the anxiety associated with it in some people?

Also, where can I get the wrap around sunglasses you referred to?

Thanks!

I just received my first Botox injections today. My Opthalmologist used only 25 units total and at 5 different sites per eye area. This sure seems like a very low dose compared to most of you. I sure hope it helps at this low dose, otherwise I will have to suffer another 3 months before she will redo it again. Drats!




| | Where am I? Original message Top of thread Current page
Re: Karen/Botox Units
Re: Re: How successful is botox for you? -- Karen Top of thread Archive
Posted by: June in Toronto
02/21/2004, 05:47:23


25 units of botox does sound very conservative but most doctors start off this way and gradually increase if necessary. I know you must be anxious for the `best results' now but you really don't want a lot of units immerdiately if you respond well to less. Be patient, hang in there - you and your doctor will sort it all out I'm sure.

June in Toronto,Canada




| | Where am I? Original message Top of thread Current page
Re: Karen/Botox Units
Re: Re: Karen/Botox Units -- June in Toronto Top of thread Archive
Posted by: Barbara
02/21/2004, 08:13:55


Many dystonia patients take klonipin to help the dystonia spasms. In most people it really helps but be careful it is very additivie. Everyone takes various doses. I started at .5 mg 3x aday and then I was upped to 3 mg 3 x a day. Too high. I'm still trying to lower it back down to .5 3 x a day. Too high and boy can it mess up your libido ( that's another story). Good luck Barbara



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- Karen Top of thread Archive
Posted by: Mary, upstate NY
02/21/2004, 10:20:34


Karen - Clonazepam was prescribed for me for anxiety, for which I was being treated before I finally found out what was wrong with my eyes. When I was finally diagnosed with BEB, that med turned out to be (usually) the first one prescribed for BEB. It relieves anxiety, but also is used to treat spasms. I am convinced that stress/anxiety strongly contributes to, if not causes, Bleopharospasm. BEB is certainly aggravated by anxiety. Yes, I'm sure I am "addicted" to Clonazepam (small dose), but so what?? There could be worse things! It works for me, and keeps me somewhat sane and un-spasm-ing!Mary



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- Mary, upstate NY Top of thread Archive
Posted by: Ann Doyle
02/21/2004, 16:01:06


Two years seems to be the norm to be diagnosed.
Botox only works for me for 6 weeks. My first was only 25. Then 100. I also have Meige and Oromandibular. I did get a myectomy and the first time he didn't give me very much and I am really suffering. I have my appointments through DEC. He only likes to give them every 12 weeks but I make the appointments for 10 weeks. I would like them for 8 weeks. I keep looking around for someone with experience within a days drive and can't find anyone. My DR is excellent and is booked 4 months in advance and will not take anymore patients. I'm afraid to quit since I am on Medicare and he is connected to Vanderbilt Hospital so he doesn't have to pay for what Medicare doesn't. Before the Myectomey , I was up to 220 but I do have all that other stuff. Total face, jaw, throat, tongue. Ann Doyle



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you? to Ann
Re: Re: How successful is botox for you? -- Ann Doyle Top of thread Archive
Posted by: Barbara
02/22/2004, 07:39:05


Wow Ann I thought that my units of 160 were high. For you to drop from 220 units to 100 is remarkable. Best of luck Barbara



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you? to Ann
Re: Re: How successful is botox for you? to Ann -- Barbara Top of thread Archive
Posted by: Ann Doyle
02/22/2004, 16:26:21


Remember, I get them all over my face , neck and jowl. I don't think I will need so much now after the myectomy. Ann



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- Ann Doyle Top of thread Archive
Posted by: Dee Shaw
02/28/2004, 02:16:57


Wow Ann. That's a lot of Botox. I get about 90 every 3 months. I, too, have Meige; Oralmandibular too. My doctor doesn't seem to think the botox will do much for my jaw movement. He says he will give me shots there if I think it will help. So far the Neurontin seems to help that. I also wear wrap around dark glasses. One pair for indoor use and one for outside in the sun use. I have a pair of regular photo-grey.. type glasses. I get my wrap around glasses from a doctor in Idaho where he makes them especially for people with light sensitive eyes, etc.
I took a long time to diagnose, about 8 years. Even had a Doctor suggest I see a psychologist. Noow I have my family doctor, an Optomitrist and a Neurologist. LOL Been taking BOTOX for about 5 years now. Also take Ativan and Celexa. I take other medication because I have GERDs, but that's not for the Meige.
Hugs,
Dee



| | Where am I? Original message Top of thread Current page
Re: Stress and Diseases
Re: Re: How successful is botox for you? -- Mary, upstate NY Top of thread Archive
Posted by: June in Toronto
02/22/2004, 06:38:02


Its well understood, Karen, that stress aggrevates and even brings on diseases if we have a pre-disposition to them anyway. That's why its so important for us to learn to relax and go with the flow. I wish I had listened to my own advice many, many ago, as i believe I was pre-disposed to beb as a child when I was accused of blinking too much. Its not too late to learn, however, even as I near 65, and doing yoga for the past 2 years has helped me achieve that. I tried a few medications for the beb but they didn't help me at all. thank God and Dr.Scott for botox. Best wishes

June in Toronto, Canada



Modified by June in Toronto at Tue, Feb 24, 2004, 06:08:40

| | Where am I? Original message Top of thread Current page
Re: Botox
Re: Re: Stress and Diseases -- June in Toronto Top of thread Archive
Posted by: Pam
02/22/2004, 15:54:26


I don't post very often, but wanted to encourage all those newly diagnosed to keep trying. I was diagnosed in July 2003 after only (relative to others) 6 months of symptoms. I was referred to an opthomologist who does plastic work/Botox. The first time was somewhat successful, but I had a bout with ptosis and an allergic reaction to some eye meds for the ptosis -- not fun. Then I went to another doctor in the same group. Had two rounds of Botox that did nothing. The local support group coordinator gave me the name of a neurologist. He was totally different in his approach. He spent some time with me, used ice bags, etc. He really "nailed it"! Two days later my eyes were open enough that I could drive without singing and could listen to the radio! That was 2 weeks ago. It may not last, but it is well worth it. I now understand how effective Botox can be if administered correctly. I urge anyone who is not having good results to go to a neurologist or neuro-opthomologist. I think they understand this disorder so much better. Hang in there!
Pam



| | Where am I? Original message Top of thread Current page
Re: Botox
Re: Re: Botox -- Pam Top of thread Archive
Posted by: Ann Doyle
02/22/2004, 16:30:50


Pam , you could add a Movement Disorder Clinic to your list of specialist. They are Neurologist plus. Ann Doyle



| | Where am I? Original message Top of thread Current page
Re: Stress and Diseases
Re: Re: Stress and Diseases -- June in Toronto Top of thread Archive
Posted by: myrna j
02/23/2004, 20:37:27


This is so interesting, June! I blinked a lot as a child too - in fact my friends nicknamed me "Blink". I've been curious whether the the excess blinking as a child might be connected to BEB now. Hmmm.
Myrna



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: Carolyn Pifer
02/22/2004, 19:25:08


I received my 1st Botox injections in August 2003 I have been doctor-hopping since then (3 different doctors) & think I have finally found the right one. He is experimenting with placement & quantity of the injections & after the 1st treatment my eyes were better than they had been for the past year. However, it only lasted for 6 weeks & now I am back to spasms. Also, even though my eyes stayed open this time, I experienced severe dry eyes & slight blurred vision - feels like I am constantly looking through a fog. I am on the young side for this condition also - just turned 43 but am holding out hope that a cure will be found. Hang in there.....

Carolyn




| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- Carolyn Pifer Top of thread Archive
Posted by: June in Toronto
02/23/2004, 06:34:45


Its great that you found a doctor who experimented with placement and quantity of the botox inejctions, Carolyn. Next time perhaps he will increase the botox units and you will have a longer time of relief . How many units did he give you that time? I've had the injections for 9 years now and not every time do I get blurred vision but, if I do, then I know it will disappear in a few weeks. The dry eye seems to be a constant with me - I aggressively attack that condition 365 days a year, at least every hour I put in preservative-drops and creams and the night-time regime even more so. you hang in there....June in Toronto, Canada



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: Kathleen
02/23/2004, 08:21:30


Thank you, everyone. It is so easy to start feeling sorry for yourself when your body starts acting differently than you think it should. I have always been a very healthy, very active person and it is frustrating to have that limited. It helps to hear from all of you who have learned to deal with this disorder. I am seeing a neurologist who specializes in movement disorders, so it sounds like there I am on the right track. I, too, have relief of the spasms when I speak or sing. The relief is great, but it tends to make people think that you have a psychological problem rather a neurologic disorder. I know one of the things I am going to have to learn is to have a little more patience with things, so will keep that in mind as I go in for my next botox on Wednesday. I've seen several mentions of special sunglasses you have found to be helpful for the light sensitivity. I love to garden and practically live outside during the spring and summer. I would appreciate any info on the type of sunglasses and where you obtained them. I apologize if that has been answered many times before, but I'm not real familiar with this BB yet, so don't know how to search for a topic.



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?/singing and psycho
Re: Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: Ann Doyle
02/23/2004, 11:39:39


I used to wonder why a person who stutters can sing without stuttering. Someone explained to me that speech is one part of the brain and singing is in the creative side. Works for me. Ann Doyle



| | Where am I? Original message Top of thread Current page
Re: How successful is botox for you?
Re: Re: How successful is botox for you? -- Kathleen Top of thread Archive
Posted by: Lynn Yarbrough
02/23/2004, 11:50:52


>I, too, have relief of the spasms when I speak or sing. The relief is great, but it tends to make people think that you have a psychological problem rather a neurologic disorder.<

Both public speaking and singing create a kind of stress in your system that causes adrenalin to be generated, and it's the adrenalin that pops your eyes open. It probably also helps reduce the likelihood of automobile accidents. So tell your mistaken friends that being around them is too boring, that you need more excitement in your life :O) and more adrenalin in your blood stream!

--- Lynn




| | Where am I? Original message Top of thread Current page