Re: pseudoephrine hydrochloride/Carol
Carol , I guess I don't know what other names this (otc)?? drug has. If you could elaborate please. Is this an allergy medication? I don't take any of those so I don't know how to respond? Is it one of those cold or sinus medications? I usually just suffer thru it and try and close my windows during pollen season as I stupidly didn't , not being aware that so many allergans were in a different climate. Stuff happens gradually, until you read things , for instance , on this support group, and you become aware. I also change my air/heat filter very frequently with a high allergan ( supposedly) screen.
Re: pseudoephedrine hydrochloride
Sudafed is the USA brand name for Pseudoephedrine Hydrochloride which is a common over the counter nasal decongestant. It usually comes in 30mg tablets and instructions say that 2 tablets can be taken every 4 to 6 hours. It has been brought up here before on the bulletin board and some people do find that it helps.
I tried it some time ago and it didn't help me but I have tried it again recently and it is helping some, now. I also take Benadryl along with it as the Benadryl definitely helps to relieve some of my symptoms and help with the apraxia problems. I personally think that it has to do with its slight "stimulant" action.Shirley in Arkansas with BEB/Apraxia
Re: pseudoephedrine hydrochloride
I usually get the cheaper generics, but I started with Sudafed. It helps me if I don't use it too often. When I was using it regularly, it quit working and I had to stay off it for a while. My doctor did warn me that it can cause high blood pressure, so be sure to watch out for that if you take it regularly.Virginia in AL
Re: pseudoephedrine hydrochloride
Your comments re: high blood pressure is very interesting. Not sure if this is relevent to it all. But have noticed as of late, especially, when I lie down, my pulse seems abnormally fast. HUMMMMMMMM. I do not see a Dr. regularly, other than when I go to my neuro opthamologist for botox injections. I would hate not not be able to use the sudafed as, I feel along with the botox, am able to maintain. W/o it, I could not. Carol
Re: pseudoephedrine hydrochloride
There are many over the counter drugs that contain those ingredients and they often do increase the heart rate and increase the blood pressure, cause insomnia if taken in the evening and cause hyperactivity in some people. It can cause the heart to "race" or "skip beats". It needs to be taken with caution and supervision with heart disease and high blood pressure or mitral valve prolapse or history of irregular heart rate or rapid heart rate. Taking it with other stimulants like caffeine can make the symptoms much worse.
Re: pseudoephedrine hydrochloride
This is very interesting and it didn't click for me until Shirley talked about Sudafed. Three years ago, I had been taking ADVIL COLD & SINUS quite regularly, since I often suffered from sinus headaches. When I first went to see my GP about my bothersome dry eyes about a year 1/2 ago, he told me the first thing to do is stop taking the advil because this was drying my eyes, so I immediately did. At this point my eyes were just a little dry at times but nothing that really concerned me in fact, I had thought the dry eyes were a result of maybe 2 things. One being that I had been working on the computer all day at work for the last 10 years, or that it was a sinus problem. These 2 things were always in the forefront of my mind. Then I sort of resigned myself to thinking that it was sinuses since I had pretty much stopped taking the sinus medication and my eyes were bothering me more often and this was the only thing I had changed so occassionaly I would still use the sinus tablet but I would try other brands and at times, they seem to relieve my symptoms of dry eye irritation but not always so I stopped completely and it was then that my eyes seemed to progress more quickly. Could there be some connection as to what is being discussed here? Since I take no meds at all and just receive the botox injections, perhaps it is worth trying a sinus medication again?
Does anyone have any thoughts or comments on this?
Debbie, who's has been 9 weeks since the last injections and it is now beginning to wear off! Next injections June 20th and I don't know that it will last that long but it really needs to!
Re: pseudoephedrine hydrochloride/Debbie
Yes , this does deserve some thought . Nine weeks is the longest period of time i have ever gone in many years. If I could go that long every time i would be able to cope perhaps a lot better.
Re: antihistamines-to take or not?
Hi Debbie. I also have taken my fair share of antihistamines before I developed BEB. There is really no way of knowing if they caused the problem with BEB or not. I can only speak for myself on this. I have blepharospasm for some reason but Benadryl does help my symptoms so I take it. Occasionally, I try to stop taking it and my eyes close down whether I have had BOTOX or not. I would love to say that the BOTOX controls my symptoms but it does not. I do much better with a combination of medications and BOTOX.
It may be that you could take an antihistamine that seems to help when your BOTOX starts to wear off and then stop it again when your BOTOX is working well for you. Trial and error.Does your daughter, Nicole, have any questions for us? Ask her what bothers her or scares her the most about your blepharospasm. She could post and tell us or ask questions. Shirley in Arkansas
Re: antihistamines-to take or not?
Shirley, do you mind me asking the ammount of Benedryl you take on your worst days?
I started out on Benedryl because I thought I was allergic. I got up to two at a time four times a day ,25 mg, before I was diagnosed . The doctor was sirprised I was taking so much.
I still take it even after Botox but feel like it is losing it's effectiveness on the other hand I know my condition keeps getting worse..
Do you believe you can build up an immunity to Botox and how much do you take usually and also the max on your worst days.
--modified by Ann Doyle at Tue, May 28, 2002, 07:54:59
Re: antihistamines-to take or not?
Ann, the most Benadryl I have taken is 50mg (2-25mg tablets) four times a day. Right now I am getting by with 50mg, two to three times a day. You can build up an immunity to it and it doesn't work as well and when that happens, I stop it for a month or so and then restart it. I try to back off on the dose that I am taking whenever I can or happen to be having a "good eye day". At those times I may take only one tablet. I also take .25mg of Klonopin twice a day. It is all something that I have gotten used to over time and it no longer makes me sleepy. In fact, I find that as the medicine kicks in and my eyes are doing better that I am more wakeful than I was "unmedicated".Before my surgery, I was getting 100 units of BOTOX approximately every 8 weeks. Things have been rather complicated since my surgery a year ago and I am on my 3rd BOTOX doctor. We are still working on sites and dosage. I've gotten anywhere from 27.5 units to 60 units approximately every 9 weeks since my surgery. I waited too long the last time after only getting 27.5 units and went into "shutdown" mode and became extremely depressed and non-functional. I was being led around again. Not fun. I think that some people can and do build up an immunity to BOTOX but I don't believe that it happens very often. Shirley in Arkansas
Re: antihistamines-to take or not?/Shirley
Thanks for answering all my questions and other questions I had but felt like I didn't want to take up too much of your time.
Like you , I try not to take Benadrl and can usually go without right after Botox. But that didn't happen this time. I hate the idea of doing without it for a month but that seems like the only alternative. It doesn't make me sleepy either.
It seems like I need the maximum amount of any medication to do me any good. I would prefer to take the least amount possable.
My Dr. is very conservative and won't give Botox closer than every 3 months. I think I read on the net that the max given for the face now is 150. Again , I doubt if my doc would give any more than 1oo. I admire your courage of trying different docs.
I don't know of a good one in a 150 mile radius. A new doctor moved into a near-by town and advertised that she would give botox Mentioniong Botox makes me think she is in it for the $$$$$. Good doctors don't have to advertise and since she's been a doctor for all of 3 months, I don't know if I'd want her to give me a flu shoot. Thanks again, Ann Doyle
Re: Many new doctors giving BOTOX
Ann, I'm glad that you mentioned about the new doctor advertising that she gives BOTOX.I think that we all need to be aware that there will be a lot more physicians out there that will be giving BOTOX since it has been approved for cosmetic use. This can be a good thing or a bad thing. In the long run I believe that it will be beneficial for most of us but in the short term, it may be a bit confusing for a newly diagnosed BEB patient that might not understand that there is a difference between getting BOTOX for cosmetic reasons versus medical reasons. There will be many doctors out there trying their hand at administering a little BOTOX for "whatever reason". It's just something to be aware of and watch out for. We all need to be seen and treated by doctors familiar with BEB and not just wrinkles. Shirley in Arkansas with BEB/Apraxia
Re: antihistamines-to take or not?
I am intrigued about the antihistamines and benedryl discussed here.
Like, Shirley, the benedryl helps me in conjunction with the botox.
Somehow it seems to enhance it with a good result--get some relief
from the breathing difficulty as well. I only take 1 25mg tablet
twice a day--am very senstive to medicine unlike Ann who needs the maximum dosage. And I have to take a break from that when I get heart
skips or racing heart. It also tends to lower my blood pressure unlike
the pseudoephedrine hydrochloride. I do notice more short term memory
loss, though. Just my 2 cents worth. Joanne M. San Diego, CA
Re: cranial therapy/antihistamines-to take or not?
Hi Shirley, I talked with Nicole and asked her if she had any questions she would like answered or if there was anything that bothered her about my beb. Her reply was quite simple.....'The only thing is, sometimes you can't drive me to the mall or to the movies.' You have to love the thoughts of a 13years girl! She has a pretty good understanding of BEB in fact her class was discussing Dystonia one day and she felt very comfortable telling her teacher and classmates about my BEB. Her teacher was very interested and has been askings her questions about how it effect me and how I am able to get around. She is and such a good, kind hearted young girl and extremely helpful for me when I really need it. I try very hard not to let this affect her or limit her in anyway and so far it hasn't. I have still managed somehow to go to her school band performances and bake for the raffles. She does know the bb is here is she has anything she would like to ask. I went to my Dr. a week or so ago just for a 6 week follow up to my injections and he indicated that my grimacing was due to facial spasms and not just my way of trying to keep my eyes from closing. I am really having difficulty accepting this. I often wonder, why is it when I close my eyes, all my spasms immediately stop??? When I close my eyes, I don't clench my teeth at all like I do when they are open, to the point I feel I am going to crack them and I don't strain my face to the point I can hardly breath when they are closed? This really puzzles me and I can't seem to get my head around this. I went to the cranial therapist today. I don't know that I feel any difference but I didn't really expect to the first visit. I am not sure how this therapy works. She was not familiar with BEB at all. I came prepared with all of my literature for her and explained my condition however she didn't read before she began and asked only a few questions about it during the therapy. She spent a lot of her time with my the back of my head touching very gently, certain points at the base of my skull. She had indicated she could feel the area was quite swollen and there was a blockage??I am not sure what she meant by that? She asked if I had been in a car accident or had fallen which I hadn't. Perhaps a standard question? It was extremely relaxing but my head felt pretty fuzzy by the end of the session. Not sure why? I will go back in 3 weeks for another session. She indicated this week my symptoms could be aggravated as a result of the therapy but would only last a few days if it happened. I feel I am spending every waking moment trying to find some relieve from the spasms and to help my eyes. I have bought yoga tapes and relaxation/meditation music, sound therapy box that I listen to all night long, eyes drops during the day, ointment at night......and on and on and on...... I am going to give the benedryl a try so see if this will help me in any way. The botox seems to be working good, 9 1/2 weeks now. I hope my next injections work as well. Is there a possibility that it may not? Does anyone know.
Sorry for the 'book' I have written here. I always seem to do this. I spending days reading all I can and then I just seem to let go and start typing.
Thanks for all of your answers and support. I may not post each day but I certainly do read the daily postings and search the archives for tips.
Debbie from London, Ontario
Re:Kids and chit chat
Debbie, it sounds like you have a very caring and compassionate and intelligent daughter. You've probably been very honest and forthcoming with information for her so that she has a good understanding of what is going on. You must be very proud of your young lady.
My sons were 15 and 18 when my symptoms started. They learned about BEB as I did. It has not been easy for them but they have handled it well, also. I was concerned at first about embarrassing them in front of their friends but over time realized that was more my problem than anything they were feeling.
I believe that the bb has helped them also as they had reinforcement that this actually did happen to other people, too. I would frequently read them posts off the board. When they started screaming at me to shut up about the bb, I decided to back off-a little. :-)
My oldest son and husband have both watched me get the injections numerous times. My son enjoys watching a little too much and cheers the doc on. :-) My youngest son refuses to watch.
I'd say that we are both pretty lucky to have our kids be so accepting of this.I have mixed feelings, too, about the facial grimacing that I have occasionally and that you are talking about. I still feel like you, that it is somehow connected to attempting to open my eyes. I don't really think anyone knows for certain. Continue to let us know how the cranial therapy goes. If nothing else, it should be relaxing and won't hurt anything. It is pretty much a certainty that your BOTOX injections won't always work exactly the same. You have had very good luck with these and hopefully you may be one of the people that does have good luck with BOTOX and finding the right doctor and things going as smoothly as they can. Think positive, girl! Write a book anytime you feel like it. Hi to Nicole for me. Shirley in Arkansas
--modified by Shirley-Arkansas-USA at Tue, May 28, 2002, 22:33:20
Re: Re:Kids and chit chat
Oh Shirley, You do make me laugh! Your boys sound great and I am sure they keep you laughing. I am very proud of my daughter, you know, she is a great kid!
I have to tell you about how I felt today. This morning after the therapy I fully expected to wake up and be in a very bad way with my eyes because of what the therapist had told me. But I have had such a great eye and face day. My face feels so relaxed and it has been a very long time since I have not spent most of the day grimacing. It has only happened a few times and I have only struggled with my eyes a few times as well. Who knows what tomorrow will bring but today was very good!
Thanks for your kind words.
Debbie
Re: Today was Good!
Don't ya just love it when you wake up expecting the worst and are very pleasantly surprised when all goes well. Those with BEB quickly learn to appreciate a "good day". Enjoy!Shirley in Arkansas scurrying around getting ready for a short trip to Kentucky for my nephew's wedding. I have given my sons instructions on everything from "not to burn the house down with the toaster oven to don't forget to scoop the poop". I'm glad that they are old enough at 19 and 21 to be left home, alone. Freezer is stocked with pizza so that they don't starve. :-)
Re: pseudoephrine hydrochloride/Carol
Kathy,
Guess I didn't make myself clear. What I was trying to say is that this otc drug(aka) as sudafed, helps my beb. Had wanted to respond to Dr. Hallets inquiry posted in the Newsletter (Org)
Carol
Re: pseudoephrine hydrochloride/Carol
Well , I'm also glad to find out what it was. Anything that helps with beb you should stick to, as sometimes certain things stop working and you have to find another. The high blood pressure problem would be something to watch however. Luckily , I don't have THAT yet. My blood pressure has always been low; I don't know if that's good or not.
Re: pseudoephrine hydrochloride/Carol
it's strange that this post came up when it did.I was scuba diving on Wednesday and have got an ear infection and have been taking Sudafed to clear my sinuses and ears..I had noticed that my BEB got better and was about to post and see if anyone else had noticed that! I checked my blood pressure tonight and it is lower than normal! I guess people respond differently..after all we are all wonderful individuals!
Claire in Windy macclesfield..with a cat who is being rather lose with the local males..more kittens on the way?
Re: pseudoephrine hydrochloride/Claire
I think cats are absolutely fascinating creatures!They also have extremely good memories.
--modified by Kathy in Atlanta at Mon, May 27, 2002, 05:26:48 --modified by Kathy in Atlanta at Mon, May 27, 2002, 05:28:04
Re: pseudoephrine hydrochloride
Before having surgery, I took Klonopin,Artane, etc. Since both made me drowsy,I took Sudafed to keep awake and it also helped my eyes. Since surgery, I no longer take any prescription medication, so I just use pseudoephedrine hydrochloride (store brand) and Benadryl(store brand) during the last month before I get my Botox. When my spasms first start to increase, I take a 1/2 Benadryl and 1/2 pseudoephedrine HCl at the same time. As spasms increase, I take one of each. Since Benadryl makes me sleepy, the pseudoephedrine offsets that and creates a good balance. Since these drugs create dry eyes, I just increase my use of Refresh Tears or Refresh Plus, while taking the drugs.
Sometimes I take a store brand allergy/sinus/headache tablet; it is a combination of 500 mg acetaminophen (Tylenol), 30 mg pseudoephedrine HCl, and 12.5 mg Diphenhydramine HCl (Benadryl). So this is equivalent to 1 Sudafed and 1/2 Benadryl, but has the added ingredient of Tylenol.
Since pseudoephedrine raises blood pressure and speeds up heartrate, I am careful to avoid caffeine when I use pseudoephedrine.
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