All posts by Chgofit16

About Chgofit16

I had Botox 12/7/2010. Immediately I had stomach issues and felt weak. Within 3 weeks I was rushed to the hospital with hives, and difficulty breathing, since then I have had tendonitist in my ankles, dislocated ribs and humorous from muscle spasms , pain in neck, arm, traps,vision issues, ringing in my ears,itching and rashes etc.Now I am having full ears and head pain, post nasal drip. It's been 15 months I seem to trade one problem for a new ones. When will this end?

Good publication on iatrogenic botulism.

Search the site below for botulism. Look for Sept 19, 2016

http://austinpublishinggroup.com/bacteriology/download.php?file=fulltext%2Fbacteriology-v3-id1035.pdf

Good to show your doctors, includes drugs not to take, and some things that have helped the recovery process.

Thrush

Yesterday was 5 years since my injection, 24 units for crows feet. I spent the day at the doctors. I still have nerve pain but much lighter then in the pass. I still get new symptoms as the toxin moves.

Right now I have thrush because I had to go on an antibiotic  . Unfortunately my sensitives are still very bad. I can not tolerate any of the anti fungal drugs. Has anyone had this issue and overcome it? I am eating a yeast free diet and using salt water and oregano oil to gargle with. I am so scared . I feel like I can’t deal with much more.

 

1/2 Marathon at 57 months

Well it’s getting closer to 5 years for me and I still have symptoms but they aren’t as bad. They still move from region to region, so I am not so sure about everyone’s theory “the nerves need to heal” I could be not able to walk one day and be 100% recovered in that area that next, but then something else gets infected. I still have symptoms daily it’s always somewhere. For me the toxin moves around and it’s more of waiting for it to be eliminated from my body.  Which is a very slow process since most nuero- toxins are reabsorbed in the gut, and then finds a new place to attack. The problem is the everyone is affected differently. So what has worked or not worked for me, might not make a difference for you.

This year has differently been my best. I am stronger and able to participate in life. I am very guarded in my movement because I can still trigger a relapse. I don’t fatigue as easily. I still have sensitivities but not as bad. I also know what triggers me most of the time and just stay away from those things. I have learned to manage this better. I have plans for the future which is so hard when you can’t plan while being ill. It’s gives me hope. I don’t take anything for granted.

I still can’t swim and my eye sight varies day to day and I have dental issues. My pain has gone from a 10+ to a 4 on the pain scale. I still twitch and spasm. But with all that being said I ran a 1/2 marathon last week and placed right in the middle of my age group, which is incredible since I was never a long distance runner before Botox. I also didn’t have a rough time recovering and no major issues, except foot spasms (I get this anyway). This put extreme stress on my body so I am ecstatic! Since stress of any kind is not my friend.

I have also been able to socialize in small doses and working and lecturing and planned a little traveling and more.

I still worry about my overall health care and health in the future. There is no way to know what damage this is doing or has done to me long term. I biggest advice is to live one day at a time and even on your worse day know that it will pass.

Lots of love and thank your everyone for your love and support.

Improvement at 4 years and 5 months!! .

Finally I can come back and say things are improving.

Where should I start? I am almost pain free. Still get some new weird stuff but it is all manageable. My vision has improved and been stable, no more floaters or redness or flashing lights. Sensitivities are still with me, but just too very specific things, no more rashes or hives. No more breathing, swallowing, chest pain or anxiety issues unless I am allergic to something. Ears are no longer full, clicking, or ringing.   Stomach is healed; I had diarrhea, GERD and nauseas for almost 3years. My period is as normal as can be at 55. Hitting menopause so I feel like most menopausal women.  My spine, ribs which would spasms and dislocate hasn’t happened in some time. This was by far my worse symptom which I thought I would never recover from, all gone. Headaches , gone! Still get weird head stuff once in awhile, a little burning or dizzy or head squeeze. Still have nerve pain in my feet. Getting stronger every day and have resumed all weight training. No more sciatica and it was so bad at one point I couldn’t sit. I lost the ability to lift my arm at one point, recovered! Haven’t had problems urinating in a long time (either couldn’t go or going all the time, and pain) Still have traces of vulvodynia. Less fatigued, no more depression. Still have some pelvis instability, but 85% better. Still twitch at night before falling asleep or if I over do it I can get spasms but nothing like they were. I know I am omitting stuff, but it was minor things like gum pain which didn’t last long or acne.

I am getting better rather than trading one by symptom for another. Want to THANK everyone for helping me along my journey. I have had a bad mammogram and a boispy and got though that and another surgery. I got through a lawsuit against Allergan and won, all kinds of various health problems and life issues. If it wasn’t from my BSC family I would have drove my family and self insane. And I have had the pleasure of meeting many of you from all over the country. Some wonderful people I wouldn’t have gotten to know, if it wasn’t for BOTOX.

 

Four year update

I was hesitant to post because I so badly want to say I am recovered and don’t want to discourage anyone.  But here I am at the four year point; this has been my best year yet. At three years I started to see some improvement.

I still have pain everyday and new symptoms now and then. The new symptoms don’t last as long but can be just as painful. The old issues still come and go as well, but they too don’t last as long. The symptoms still seem to circulate though my system.

I seem a little less sensitive to things. My weight is back to normal. I still only work part- time. If I do too much I get pain. I have been able to be more social. Still not back to my regular exercise but I am running and have been able to increase my distance.

Recently, I had to have a biopsy on my breast and the light surgery caused a relapse but I recovered in about three weeks to my baseline. My baseline isn’t as bad as it was.

This has affected every part of my body. I am very careful in what I do, eat, drink and medical advice I take. I think this has changed my life forever. I probably would have killed myself if it wasn’t for the people on this forum and the encouragement and support I have gotten. I am forever grateful.

I hope to come back like others at some point and say that I am recovered. Everyone recovers in their own time.

Vulvodynia/44 month update

Botox seems to be the drug that keeps on giving.  I have been diagnosed with vulvodynia which is:  burning, itching soreness of the vaginal area. This is my third episode of this . It comes and goes and is very uncomfortable. I know that there are at least five other women who have had the same symptoms and just wanted to put it out there that you are not alone. For me it usually goes away if not treated with anything. Just another form of nerve damage.

It been 44 months since my injections and I am feeling much better. I still have some minor lingering issues (Neck pain-which was gone last month and the above). I am not completely healed but I am on my way!!! Every month is better then the last.

Three and a half year update:

I was really hoping to say I was recovered by now but I am not. But I am much better then I have been. I started to see a turn about at the 3  year point. I am getting stronger. Less fatigued and able to function more. This has been a long journey and it’s not over yet. I have had ALL of the symptoms and then some. My breathing and anxiety resolved after the first year. I still don’t have a days without pain, mostly my spine and intercostal area.  I still have vision issues. I get joint pain (feet and hand) but it usually passes quickly. I have chemical sensitive’s, haven’t been able to color my hair or put on any lotion since year two.  Pharmaceutical drugs and some herbs are really hard on me , usually result in difficulty breathing and rashes and itching. My immune system is run down and I have developed a vaginal yeast infection which I am trying to fight off with natural products but since I am still weak my body PH is off, so it is hard to maintain  the proper flora.

My goal is to be able to dance again one day , travel, and work more (still only working part time). I actually think I will be able to do that in the future. There were days I didn’t think I would recover. There were days I prayed to GOD to take my life. I no longer think that way!  The weird depression left  after the 2 year point. I do still have relapses they don’t last as long but they are still intense. I think as long as toxin remains this will happen.

What has helped the most is:

Infrared light for muscle pain and tight muscles as well as a good magnesium supplement.

I also do HBOT ( hyperbaric oxygen therapy day)

I take one activated charcoal pill a day ( don’t really know if it does anything , but I will take the placebo effect)

Lidoderm transdermal pads for pain.

I am also able to run and do resistance training as long as I work around my spine issues.

Rest and eat well.

I also sued Allergan and won, believe me it doesn’t make you feel any better, it is stressful but I felt it was necesary .

I currently have the state investigating my doctor for failure to consent. I really think you should all do this. The more the insurance companies have to pay out in fines , the harder it will be for doctors to get insurance that will cover Botox injections. Maybe it will bring attention to our cause. If you are in the states you file with the Dept. of Financial and Professional Regulations . Tell them what happed and provide your consent form showing no mention of the black box warning. That is all you have to do.

I hope in six month I will be able to say recovered but I know others who didn’t feel better til the 5 or 6 year point, but I am over the half way point. This is life changing and I will never be the person I was before. But maybe better in other ways.

I also want to thank all of you for being there for me!!!!!

Cholestyramine Update

As some of you know I was going to try Cholestyramine to detox. There are a few studies showing that it detoxes nuero toxins from the gut. I found it very hard on my system. It gave me diarrhea, and brought on symptoms that other supposedly detoxes have plagued me with. I tried to reduce the dosage but just couldn’t get a dose low enough that I could tolerate. Since none of these detoxes are proven to actually work on the botulinum toxin I think its a crap shot.