We have built this section of the site to allow people to post and build a timeline of their symptoms.
3 year out update
it has been about 3 years since I had these injections. As mentioned before some of my major issues were humming in right ear, dizziness, permanent migraine with pain all along the right side of my head including jaw teeth face. I also had swollen lymph nodes in my neck , jaw and back of head. My eyes were blurry and my vision seemed off. There were more issues but these were the major ones. I have been on medication since this ordeal to combat the severe vestibular migraines I had been suffering from. I was put on 2400 mgs of nueronton and 100 mgs of nortriptyline. I have been able to successfully wean off nueronton w no side effects. I have definitely gotten better since this ordeal. I no longer am dizzy, I do not have anymore migraine pain and my vision seems back to normal. I do however still have tinnitus but it seems a lot more quiet now. I hardly notice it now. I also still have eustation issues in both my ears. About a year ago I had sudden hearing loss that did come back with a steroid injection through the ear drum. Thankfully I got all my hearing back. I believe I had an attack of the immune system after these injections. I read about the list of side effects and thankfully they have come out with a lot more than 2.5 years ago. Glad that is being exposed. I still have to take the 100 mgs of nortriptylin or else my migraine symptoms come back. As I write this I now believe the botox or possibly the the juvederm were the cause. Please know that a lot of symptoms will disappear but you may be left w some. I am better but not the same. I can now function and do everything and more pre injection. I would say it took a good 2 years to feel good again w the help of some major medications. All of that anxiety is also gone. . Peace and love to all of you. I hope you feel better soon.
I’m 9 months out.
I have been coping with this I’ll mess okay – still have swallowing troubles if I get any negative feelings like anger/sorrow/hurt – my vision is still blurry, I get tingles in my right leg, I have head pressure a lot of the time, and full ears. This skin give issue raised its head in Feb and exploded over my entire face up to my eyes. I had to go to see a doctor and am on different creams to help it and thankfully after a month it’s going away slowly. I have a friend I talk to on here to told me she had hives so I’m wondering if it’s related to my injections… It seems other have experienced it so I thought I’d report it on here. My face was blistering so bad i didn’t go out. It hurt to sleep. It wept and stang.
Anybody else have this?
and I had a ear specialist explain to me something very wise; the more you think of tinnitus (ear ringing) the worse & louder it’ll get. Because you think of it lots it’s etched into your mind – the brain stores the thought near the front so you will remember it. So if you think about it more, it will bother you more as the brain categorises it as “important”.
good luck everybody X
I am 6 months out today.
I seem to get better & am able to work thank god. Occasionally things happen in my body that are weird. Like at Halloween I had a terrible, serious pain in my side – it was agony. So I went to hospital & they suspected kidney stones. I was sent away with nothing more & told to follow it up with my doctor. It’s now gone, so I believe I’m one of those people where I get pain that moves round my body every now and then – I’ve also had pain in my foot and hand too since having Dysport. Most recently my lips started to burn. For 4 days they were agony & I thought something was surely going to happen as I have filler in them – but it went away & nothing became if it. (Phew!) I’m learning not to panick when I get these random pains now…but I do find it hard as I get anxious.
I still today have visual disturbances all the time, it’s very graphic what I see – almost like a computer game. My ears ring constantly. but I’m learning to deal with it all…. That is, until I fly.
My boyfriend lives in LA. I’m London. When I fly THERE, I’m ok. I get tired but genrally I feel ok. Nothing happens. When I fly home I feel awful. My symptoms are FULL force again.
Louder ear ringing, visual disturbances get worse, swallowing problems, neck ache, pressure in throat/ears/neck, shoulder and neck stiffness, my body is exhausted, and the annoying one – Insomnia…. I cannot sleep! I mean I get it – everybody feels crap after jet lag but my Botox symptoms are making it miserable. :(
It’s now day 9 after coming home and I’m still really not well with full symptoms again. I feel depressed and tearful today because of it. I don’t know how to help myself.
The sad fact is – My symptoms only seem to surface after flying home from LA. Or getting on a train.
So does this mean I’m making myself go back to stage one & not getting over it each time I fly? I’m starting to worry that I’m not going to get better because I keep getting ill again after the flight. then as soon as I pick up again I’ll start planning another trip to see my boyfriend.
Does anybody else have any experience with this? Or tips? I’m get a bit down every time I come home obviously as it is without feeling ill for days afterwards.
Thankyou if anybody reads this. Preying for everybody to get better.
Hi. I am new here and wanting to reach out to other people who have received Botox injections for migraines and had negative reactions, and no doctors that believe them. I started injections in September 2014. I have not felt normal since then. For most of the school year, I just basically didn’t feel right and had an increase in intensity of daily headaches. As the year progressed, I felt worse and worse, with vague symptoms. I just didn’t feel right. Right around May, I began to experience a lot of pain and weakness in my joints (all of them). I also became very fatigued, sometimes sleeping up to 20 hrs a day. I am now diagnosed with Rheumatoid Arthritis and on disability. In September 2014, before I got my first Botox injections, I completed a 24 mile mountain bike ride. Now, a year and few months later, my husband has to help me up from the couch, I have to arrange for a driver, I can’t use the can opener. I feel positive that this is all from the Botox injections. I have asked every doctor that I have seen and none agree or even consider it a possibility. Has anyone else been diagnosed with an autoimmune disease after receiving Botox injections for migraines?
Hello everyone–First entry, I’ll try to be concise. As mentioned on my profile, I developed a focal dystonia in my right hand as the result of 40+ years of playing steel-stringed folk guitar in the manner of John Fahey. My thumb and first two fingers now spasm constantly, making it difficult to sleep. The promise of a botox-fueled recovery, and being able to recover some playing ability, has been a siren song for the last few years, after having tried a bunch of medications that either did not work or turned me into a zombie (the combo of a fairly high dose of propranalol and baclofen was particularly awful, as was one of the patches for Parkinson’s, which makes you want to heave all day). Tried botox twice, relatively small amounts, with some slight success and no SE. Third time 25 units–15 between thumb and forefinger, and 10 on underside of forearm. 20 minutes or so after leaving my neurologist’s office (she is highly regarded in Albuquerque, where I live) I started to feel very heavy, but no breathing difficulties so I thought it would pass. I guess the lesson for anyone who has such a reaction, as so many of us have had, is to IMMEDIATELY return your doctor’s office or go to an ER and explain the situation. I wish I had. Later that day an extreme spike in anxiety, back muscles locked up. I am pretty familiar with anxiety, having done a straight taper off of klonopin over 3 months earlier. One of the hardest things I’ve ever had to do as an adult. Please, anyone who is taking benzos–be careful! Day 5, started to have the other standard–as I now know from reading this site–symptoms. Some difficulty swallowing, ears burning like crazy, flu-like symptoms, blood pressure through the roof, perpetual anxiety. Several days later, some difficulty breathing. Hard not to be anxious when that happens. It was as if the toxic effects were moving slowly down my body. Two nights ago, I finally went to an ER, and had a good chat with a doc who actually spent a lot of time with me. He even called a neurologist at another hospital for a consult, as mine was out of town. He probably would not look favorably at this blogsite, but he also did not dismiss me, as my voice was still hoarse, and I spoke of the swallowing and breathing issues. The upshot from the ER visit ($700 later) was–“Your symptoms of weakness, difficulty swallowing and weak voice may well be due to a systemic botox infection, but these are not life-threatening and will wear off over time. However, return to the ER for worsening weakness, swallowing difficulties or speech problems.” So at least I was not dismissed out of hand. But obviously, physicians need to take more seriously the very real risk of botox hitting the entire system, and not just staying at the intended site. At 12 days in, I can only hope that things will not get too much worse, but they well may. I’ll check in in another day or two. The other thing that pisses me off is that I’m probably going to have to cancel a European Xmas market trip in December that I had planned, but if that’s the worst of it I will be fortunate, indeed. It is likely to be a very unpleasant few months. Godspeed to all of us, I really do sympathize. Thanks also to those of you who share their recoveries.
A key theme for me in the last two years has been problems with these particular hormones, which I hadn’t even known existed previously.
of course all the hormones are terribly upset at the same time. But the electrolytes and stuff we’re so weird that I had to see a nephrologist…he was amazed at what was happening and said he couldn’t understand it….when I mentioned Botox he thought it was bizarre. But he acknowledged that acetylcholine and the cholinergic system is what runs the kidney function.
When having a bad multi-month reaction to stuff, I spend a couple of months of it with salt wasting (urinatng salt out and not retaining it in the body), and I have to constantly take teaspoons of salt so as not to pass out and get nausea/ muscle weakness. Then I go into severe phases of terrible muscle spasms and migraines and need to AVOID all salt, and instead drink many litres of water per day to reduce the muscle spasms.
Anyone else got this?
I’M CURIOUS what foods are giving most of us problems,
I already had a very limited diet due to IC or Interstitial Cystitis, it is a Bladder disease so if I cheat and I eat certain foods it causes me pain or my heart races, also it burns my bladder causing me to feel like I have a U.T.I or Urinary track infection, My bladder and pelvic muscles become inflamed and it causes my back and lower legs or feet to throb, it’s basically an allergy in my bladder, so I have always been on a very strict diet and can not take most medications, this is why I warned my Doc I was scared to get a reaction to the 100 units of Botox he wanted to inject in my pelvic muscles,
3 weeks later I started to sneeze weirdly, meaning I thought I was going to stop breathing, then my heart was pounding very fast and I was so out of breath,also very high blood pressure, normally low, then itchy welts under my arms . next a rash, I was so sick I couldn’t even comb my hair for 3 solid months ,
Foods, and Med’s
I had to stop salt, Beef, milk, breads, butter, Fresh beets,sweet potatoes I can’t eat cookies, ect….I stopped coffee and many other foods years ago, but now I can’t eat most of the foods I could tolerate,
breakfast,,,,,,,since march 2015 i only eat 2 or 3 boiled eggs or use light olive oil to cook them in, boiled potatoes fried in olive oil , water only to drink
Dinner: white rice plain, plain broiled chicken, fresh Zuccini, or green beans, or Broccoli,,, Water
fresh… blueberries or fresh pears,
Watermelon was causing my breathing to get worse and I felt very fatigued, same with other foods, I was exhausted all day if I ate even a few peanuts, or one cheeze it cracker, also It gives me digestion problems,
I loved salt and can not use it any more, my blood pressure is out of control and I take a pill 2xs a day to control it, I also have problems with foods getting stuck when swallowing,
it’s been 9 months and I have improved, I just hope and pray I will get back to my old self after a year,,,,,
I’m also taking vit D and Vit B for the past month, not sure if the B vitamin is causing me belly pain so I stopped them for now,
anyone who is having the food and medication intolerance please message me I used to use Benadryl if needed and that’s causing my heart to race,
Has anyone taken pyridostigmine? Or know anything about it?
I’m guessing it only increases acetylcholine levels to counteract the botox effect of decreasing acetylcholine…but not rid the body of Botox itself?
Does it work months (or years) after injections?
my friend pointed it out to me on this blog
i was in emergency again the other day so like everyone else, I’m always looking for help.
I’m seeing a GP tomorrow who I know is open minded and understands Botox is poison. Should I ask for this drug?
Thanks everyone xx
I’m new here and this is my first post. Now, my diagnose is paraplegia spastica, it’s spasticity in leg muscles, witch is causing problems with walking ( spasticity is reducing my control over my muscles);muscles are weakened, but not entirely. I received botox (actually Dysport) in gastrocnemius (2×75),adductor longus (150) and tibialis posterior (150). That was three months ago;I had a little headache that day. Soon I need to go to receive another dose (29.july),and I want to seek a higher dose (because spasticity is in all muscles of legs). I read that usual dose is around 1000 units and that maximum dose is 1500 units (at dose above that, poisoning is possible). What are you thinking about this? Has anyone been is similar situation?
Hi All — so, June 7 was my six-month injection anniversary (and my b-day. Lousy way to remember a b-day, I’ll tell you). For the past month and a half I have been noticing joint pain, especially in my hands, wrists, and elbows. It’s not there all of the time, but comes and goes (just like other depressing symptoms, like my weirdly twitching eye). I’m pretty sure I remember people on this page mentioning joint pain as a Botox poisoning side effect. Just throwing it out there to see if anything helps, or if it’s just like everything else – drink a lot of water & ginger/turmeric tea & ride it out and wait for the symptoms to go away. If anyone has any specific suggestions for things that helped (or things to avoid!!!) that would be great. Thank you!
I posted once before in March, the title was ‘Enough’. I thank those of you who responded, I appreciated the support greatly. I do have an update and, as my title informs, questions. I’m happy to report that the majority of my symptoms have diminished greatly, unfortunately I am still suffering from terrible trouble swallowing. My questions are: Has anyone out there been suffering as long as a year with trouble swallowing? What is the longest anyone has had trouble swallowing? Can you offer any tips or advice? As I had noted in my first post I have been taking a mild dose of Xanax and it works. I have a Dr appt on Tuesday as I’ve been trying to wean off the meds but when I do I can hardly swallow at all. My concern being that even though most of my symptoms have diminished maybe this is due to something else, you never know.
On another note I am in the process of recovering from shoulder surgery, torn rotator cuff. I know it’s common BUT I’m suspect…..with everything I was going through with my muscles being horribly weak. Maybe the Botox weakened them to the point of tearing. As I said, suspect .
Thanks for taking the time to read my post. All the best to everyone
Hi everyone, I was injected with 3 x 90 units of Botox in 2012 and my life hasn’t been the same since. This site has kept me going and given me strength to keep trying to find answers and to keep speaking out. I have been suffering from nearly every symptom listed on this forum, have been in emergency numerous times and have been admitted to hospital twice for about 10 days each time, leaving with no answers or help. After these last 3 years I could write a book on everything that’s happened but I will try and keep it as short as possible. I suffered from debilitating breathing problems, right side facial droop, anxiety, muscle weakness, muscle spasms, blurred vision, body swelling, fluid retention, eye twitching, my body in constant allergic and inflammatory state, hot flashes, nausea, foggy brain, swallowing problems, dizziness and wanting to pass out, hot water sensations in leg, buzzing in leg, tachycardia, numbness and wanting to pass out when I lie down and very poor circulation. Numerous tests have been done but this is what doctors have admitted so far… Left side weakness, blood gas test 74%, left side chest muscles don’t move when I breathe, nerve 9 in my throat is gone, have numerous deep white foci lesions all through the top of my brain, also every medication they gave me in hospital made my body go nuts with respitory spasms, head tremors, eye spasms, acute right side facial droop and the feeling the floor was moving underneath me when I walked. When I was in hospital in January this year, they sent in 3 teams to assess me: neurosurgical team (who actually listened to me a little bit), the neurology team (who didn’t want to know me- and who also lied to me about my second MRI results as they had no idea what the lesions all over my brain were)and then they sent in the Psyche team *insert eye roll* who said I was mentally fine and stable. Doctors said they had never seen anything like it before. The neuro surgeon released me from the hospital telling me I needed to find someone that was willing to help with botox toxicity but he was not willing to document that. I’m also having trouble getting the hospital to release my chest/diaphragm results and am still trying to get them as we speak. I am booked in to see an immunologist tomorrow and am also in the process of finding a forensics lab that are willing to test for botulism in Sydney. My gosh it’s been a long hard 3 years but I’m so grateful to everyone on this site and for all your posts! This poison has taken away our lives so we all have to try and support each other and find some answers. Stay strong everyone and keep speaking out!
I am so devastated to learn what I have done to myself. I did not figure out until this last year that Botox has ruined my life & I feel like at times I can die, I have had what seems to be attacks that lay me out! I sort of started to put two & two together as it seemed that just a day or two after I got Botox I would become ill. I thought to myself no I have been getting Botox for years BUT you know what I have not felt great for a very long time, I blamed it on PMS, I have female issues, stomach problems I just thought it was my body until this last year. WOW I am sick I am scared that I will die! My body is so thin it hurts all the time, I have terrible night sweats only at night, I have a hard time eating as it feels like I am swallowing acid, my body cannot break food down properly. I asked so many Drs to please help me and they tried until I mentioned BOTOX this is both PS & GP they say no way it cannot get into my body but I now know it has. My last Botox encounter proved to me that I now have botulism poisoning. So I will not go on & on but I have some good news, I saw a gastroenterologist who is also a scientist, she believes me she thinks that I have been sick because of Botox. I have been diagnosed with hydronephrosis due to my sphincter valve being damaged due to the botox this has caused kidney problems & my gut. I am getting ready this next week she plans to scope me & is actually taking my case to the board so that the Drs she works with are aware of this. I pray to God I get better as I feel so sick but this has cheered me up finally a Dr to help me!! I Hope I can help many byn sharing this, my Dr pulled up on her computer in front of me the side effects of Botox & was convinced many of my problems are due to Botox. The botix has weakened the valve to my kidney to my bladder and I am in danger of loosing my kidney if I do not fix it, I am scared to see what she finds in my gut and that entire area. This is very scary & very real. I am hoping for s class action against the use of BOTOX!! If anyone has any of the same issue please let me know. I will keep posted the results of my scope as well. Oh I also have dents in my head and hollowing in the temple area a PS said to me that it was just my facial structure well I did not have it until now since I have not used botox go figure.