I’m a 53 year old very athletic woman, I play tennis, walk anywhere from 6-7 miles approx. 6 days a week and hit the fitness center on occasion. And I am sick by what I believe Botox has done to me both mentally and physically. Finding this site has been my salvation, it has helped to keep me positive and fighting through this miserable experience.
I have had approx. 4 or 5 injections, my last on being on April 3, 2014, 54 units in my forehead and around my eyes. Three weeks later it all began to fall apart. I started having some very concerning health issues, it began with having trouble breathing one day. I tried to stay calm, thinking it must be some sort of indigestion, well low and behold I did burb, but it was as if it had to fight it’s way out. Then one day I noticed that my tongue was quivering and fasciculating, along with all of the other muscles in my body, and I mean pounding. My muscles ached like never before, I would be sitting on the couch and be in pain, without even moving, then I would get this spasm in my left calf that was terribly painful. I’ve been athletic all my life, I’ve never had a muscle spasm!. So then I start having trouble speaking, I was on the tennis court, just trying to say “good shot” and it was like I had to fight to get the words out of my mouth, thank heaven, that only lasted a few weeks. When I would go to work out I would come home literally with my muscles trembling, when I would try to do a plank my arms would shake like jello, when I was walking I was afraid I was going to fall because my muscles weren’t supporting me. My arm would just jerk, for no reason, out of the blue. Then the real fun set in, trouble swallowing, anxiety and depression, I would wake every day with just this overwhelming feeling of dread.
The trouble swallowing and my tongue quivering led me to begin with a visit to an ENT. I was diagnosed with laryngeal and pharyngeal dystonia, which is caused by a neurological problem which they treat with….Botox! I could tell by the Dr.’s face I was in trouble. My voice was also very hoarse. Wants me to see a neurologist immediately.
This is when I began to utterly fall to pieces. I was sure it was either ALS or Parksinson’s, Google really can a times be one of the worst inventions ever. I contacted my GP and asked for a prescription for Xanax, the anxiety I was experiencing was overwhelming.
So begin the visits to two neurologist, who conducted muscle and nerve conduction tests, I had blood work, two MRIs and various visits to my GP. Guess what? Came up with nothing. Am I crazy???
In regard to the trouble swallowing I noticed that if I had a cocktail I could swallow. What the heck? I couldn’t each much during the day, so at night I have a cocktail and eat like a truck driver. Well, then put two and two together and found that the Xanax helped with the swallowing a bit as well, but not as much as the alcohol. I was grateful for that because I couldn’t go around drinking all day and I was freakin hungry. The ENT said it was because it was relaxing the muscle.
One day I had the TV on and heard a commercial for Botox and heard that it can cause trouble swallowing! I’m embarrassed to admit that I did not due any due diligence regarding the strongest neurotoxin on earth that I was injecting into my body!
Months pass and I notice that my tongue is not quivering anymore and my voice isn’t as hoarse. I went back to the ENT and asked him to bear with me and hear me out, I think this has been caused by Botox. Now the man works with it to treat the condition I was diagnosed with so I was expecting him to disagree with me. He scoped my throat and said he saw improvement! He said, “I think you figured this out for yourself”. He agreed with me!! I almost jumped out of the chair with sheer joy! He also told me the problem swallowing could last anywhere from 6 months to one year!
After that I started to calm a bit, still dealing with all of the symptoms, reading this site to stay strong, but hoping we’re right and just trying to cope through it. Then I get a call the other day from my GP and he asked if I’m buying into this. Oh no, please, I can’t go there again. He wants me to go back to the ENT for a recheck. I went in, making sure not to take any Xanax so I would get a clear result. He said the dystonia was 90% better but he wants me to stop the Xanax in the morning to make sure it’s not masking something and I truly am improving. Enough, please! Now I’m a wreck again. What if I have been masking something? I can’t do this again.
I’m going to try to stay positive, I’m pretty darn sure I’m heading in the right direction! I’m not having trouble speaking anymore, my muscles don’t hurt, albeit they do still fasciculate, but not as hard, I’m not cramping anymore and the depression has lifted. I am still struggling a bit with anxiety, but having trouble swallowing for close to a year gets old.
My questions for any of you are: Has anyone had the same diagnosis of dystonia and has anyone had trouble swallowing for such a long time.
My helpful hints are fish oil and especially magnesium. Not all magnesium is the same, some are not absorbed as well. I’m using Magnesium Taurate and truthfully find it amazing in calming my muscles. Also a cocktail for swallowing….I’m probably going to wind up in AA, I think I’ll send the bill to Allergan, or whoever just bought them out.
Thanks for reading my ridiculously long dissertation. Any and all support, suggestions, ideas, anything would be enormously appreciated. And for those of you who began this site, I thank you from the bottom of my heart. For those of you suffering I wish you strength!