Category Archives: Improved Update

Recovery can often be a long process therefore this section has been provided so that members can post when they feel they have had significant improvements. Members may feel like they are not ‘recovered’ however their improvements have been considerable enough to give hope to other members that are still in the initial stages.

3 year update


 

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.

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.

Higher dosage of botox (Dysport)

Hello everyone,
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?

2 year + update

Hi everyone.

First of all I’d like to say I’m sorry I haven’t been on this site much recently. I still think about the people I have met and talked to on here all the time, and wonder how you are doing.

I’d like to share my improvement to give hope to those who are in that dark tunnel. I was severely incapacitated – couldn’t use my body even for daily tasks, in severe pain for months and months, many episodes of being unable to walk or do basic things. I’m sure you can find more details in my past comments. I looked and felt like I had been poisoned and my body was dying. It’s been more than 2 years now – its been so long I am starting to lose track of when it started as my whole life has just been overtaken by sickness.

Onto the good news – Currently my pain levels are way down, symptoms less and less severe, and when things happen recovery time is shorter and they are generally less intense.

I’m doing something I wasn’t sure I could do again – working full time. I do 50 hour weeks so all my time and energy is spent working, and the little time I have left is trying to rest. I definitely wish I could focus more on my health like I did before, but after not working for so long and spending so much on trying to get better, I am just grateful to be able to work, and to have someone willing to employ me. I haven’t been able to enjoy the improvements in my health because I have no time to do things for myself, and I do worry that I may need to stop working to recover more. I worry about how long I can last doing this before something has to give, but as much as I need a rest, I don’t want to go back to where I was before, unable to do most things.

Acupuncture definitely helped me. I waited to go until I felt my body was less reactive. If I had gone when I was at my worst I feel like it would have made things worse. I took Chinese herbs too, which had a detox effect. I stopped after a certain point, probably 6 months of treatment, due to the expense, but I would go back for maintenance. With acupuncture I didn’t get a reduction in specific symptoms, but my health improved overall – I wanted it to help normalize and regulate my nervous system, which I think it did somewhat.

I learned about burbur on here and that really helped my herxing. I also tried sodium alginate which is supposed to help absorb poisons in the gut – I took it for several months without knowing if it did anything, and I still don’t know if it really does this, but it did seem to help me with preventing muscle weakness. When I stopped taking it my muscle weakness and inflammation increased. AHCC – this is a mushroom used to help cancer patients through chemo. While this hasn’t removed any of my symptoms, it gives me energy and without it I would be much more tired.

I’ve tried many other things but those are my mainstays.

Where I’m at now:

I’ve gotten used to looking like someone punched me in the eyes – I never had dark circles before, but since being sick they are part of my face. I also look much older, have deep wrinkles on my forehead and some muscle recruitment in between my eyebrows. my eye is droopy because that side of my face seems to have dropped slightly. Some days all of this looks less bad than others – I just wish I knew what it was that helped it look better and what makes it look worse!

I feel anxiety and stress I never felt before and in general I feel like a different person. I don’t want to have all the limitations this person has, and find it hard sometimes to see how narrow my life has become and how much I have lost.

Various autoimmune symptoms and hypersensitivity. My food allergies started about a year and a half in and have gotten worse each month. I currently can’t eat most things – I know there are people on here who have survived on just sweet potatoes, and I’m in a similar stage. If anyone has any remedies for the severe food allergies or knows how to start the process of reversing it, please let me know. I’ve tried ACV liquid and pill form, enzymes, probiotics, etc but haven’t had any luck. Has anyone tried acupuncture for this?

Teeth problems – sensitivity, cavities, you name it. I never had tooth problems before, but being in bad health must have caused them plus drinking apple cider vinegar and vitamin c powder in water (separately, at separate times) has eroded my enamel.

Muscle loss – everything dissolved long ago, still working on improving strength.

It took a long time for me to be this improved, and I’m still on the road to recovery. Don’t be discouraged that I still have symptoms – most are manageable and there is no denying my quality of life has improved. There are days where I have started to feel like a normal person. It’s strange and amazing to glimpse what I used to be, and feel normal even just for a moment. It’s incredible to not be in constant pain, and I do my best to manage my symptoms even if that means I have no life (lol).

I’ve thought about making this post for a long time, and I’m glad I have done it. I try to limit my typing because I still have issues with the nerves and muscles in my fingers, hands and arms. I can’t promise I will come here often just because I have so little time (I really would like to change this without being unemployed), but I do want to be of help to others and learn from you as well. I don’t know how I’ve lived through everything up until this point, but we can all survive. We may never be perfect, but we have to believe we will improve.

QueRegarding Trouble Swallowing

Hi Everyone,

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

light at the end of the the tunnel

I want to share my Botox experience with everyone because I am living proof that there is a light at the end of the tunnel.  I had 100 units of Botox injected into my right pirirformis muscle for piriformis syndrome.  I had been experiencing unbearable sciatic pain for years and my doctors and therapists suggested the injection.  I am an RN and was concerned about injecting a toxin into my system, but was assured by my doctor that it would wear off within 3-4 months; the worst I might experience is mild flu-like symptoms.  As we all know, this is simply not true. My injection was on March 20, 2014 and I have experienced the following symptoms over the past 14 months:  anxiety, depression, short term memory loss, severe diarrhea, fatigue, headaches, hypertension, night sweats, swallowing problems, internal chills, paleness, visual problems, ringing in ears, episodes of paralysis to all 4 extremities, with the inability to hold up my head, severe breathing problems, slurred speech and droopy eyelids.  I have been in and out of numerous hospitals over the past 5 months.  All tests have come back negative. My pain management doctor, who is new to me, was the only doctor to acknowledge that my symptoms are most likely due to the Botox injection.  From what I understand, there is no cure.  I have a wonderful primary are physician who is treating my symptoms; and mine have improved significantly over the past few weeks.  I take Propranolol 10mg in the morning and 20mg at bedtime.  I also take Klonopin 0.5mg twice a day. These meds were initially prescribed for hypermobility syndrome, but they also seem to be managing my Botox symptoms, as well.  My diet consists of fresh fruits, vegetables, small amounts of lean meat, Bolthouse smoothies with added protein supplement;  I drink a lot of water and have eliminated alcohol and soda and I limit my sugar intake.  I also take a probiotic twice a day; the diarrhea has resolved.  I had been confined to a wheelchair, but I am not able to walk short distances, and I will begin aquatic PT soon.  Pulmonary function tests revealed that my small airways are only functioning at 58%.; however, I have learned to pace myself, going up and down the stairs only a few times a day.  I have oxygen as needed, but thank God I haven’t needed to use it much.  I feel I am getting stronger every day.  This experience has had a positive outcome for me because it has renewed my faith in God.  I have been praying daily and I am now attending church regularly with my family.  I truly believe in the power of prayer and I thank God every day that I am alive and that I am getting better.  I pray for everyone who is enduring this nightmare.  But please, keep the faith that things will get better.  God Bless.

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.

 

Enough!

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!

 

I

 

 

 

 

relaxing helpful visit with gp

well ive been meaning to write an ‘improved’ update for some time and just not quite up to it yet.. juts want to say that i had a sort of encouraging visit with my gp today…

i havent seen her in the whole time since this becuase i was embarassed what i did to myself, and i was afraid she would disbelieve me.

shes really always been very nice and i told her that, first thing when i saw her.. that i was both embarassed, and afraid… she was very, sympathetic. i showed her the pictures of what happened to me and she was just very sympathetic. she didnt doubt what i said, and i told her straight out that many drs wont believe us and how painful that can be. she was again, very sympathetic. she said, ‘doctors dont always know’ and that it wasnt unreasonable to try botox for headaches, i had done reserach, it wasnt my fault that it went bad, she said i shouldnt feel bad about it at all.. she said it was a totaly reasonable thing to try and i shouldnt feel dumb in the least at all and that she felt that my drs should have been more ‘honest’ with me. she said drs are not always honest for many reasons, but she thinks beign honest is better, and i told her, yes i wish they had been honest with me it would have made this much much easier. she just said, ‘drs dont always know, and you have to be open to what patients tell you’.

she allowed me to have some tests for liver function and kidney function and thyroid and a few other things.. (i may try to ask for some more if i can think of which ones) and i asked her about muscle relaxants that are -not- benzos. (My chemist bf had been researching drugs for another purpose and told me to ask about other muscle relaxants.. these are often used for muscle spasms and nerve issues.. i think someone else here mentioned being on flexeril and this was the one she suggested so i wil try that first.)

i have to say that at 3.5 years, many of my original issues have not really appreared during the last year. i have almost no joint pain anymore and i blieve this is directly due to the anti-inflammatory diet/cleanse i have been on.. (since exposure to certain foods/chemicals etc always increased the joint pain) joint pain is almost nonexistent now. muslce pain is much much less, i still have the muscle and nerve problems in my face, and very mildly in the neck and back.. this is what i was hoping the non-benzo muscle relaxers would help, they are specifically for muscle spasms and nerve pain.

so the other thing to know here, is that there -are- non-benzodiazepene meds specifically for muscle spasms.. and nerve pain.. theres a small handful of these meds, one is flexeril, there is baclofen, one called soma, and a few others.

soem are more mild than others i think flexeril is a mild one. i confess i have been trying baclofen as my bf had some and let me try it, and i really love it. i may ask my dr for it directly if the flexeril does not work. also, the benefit of baclofen is i have completly stopped the ativan, and im really happy about that.

it is better than the benzos for my issues now i think and im happy to be able to discontinue them if possible. also, baclofen is used specifically (of label) to stop cravings for alcohol -and- benzos.. so if you are on benzos and want to stop, you can try baclofen it will allow you to stop the benzos..

ok well, just wanted to say, at 3.5 years, the only real remaining issues that bother me are nerve pain in the face.. which is still the worst part of the problems… persistent but not overwhelming neck and lower back.. -very- occasional weakness.. extremely rare joint pain (usualy related to exposuer ot something). my hair is thick and healthy, my skin is healthy, i can eat most things, i can handle exposure to normal chemicals, i dont have to be afraid of every little thing that happens (though i often still am) and i have not had secondary symptoms arise during the past year. my eyesight is stil very bad, but as i said, the worst area continues to be the actual injected muscles including my eyes :<< puffiness is gone, bags under the eyes gone, dry eyes, gone. hollowness in the face, -much- bettter.

i will stick with my anti inflammatory cleanse for a second year (more about that later) as i feel it has reeeeeally helped the joint issues and all other issues in my body. i feel a lot of the problems are residual inflammation, i think some flares are due to inflammation from different causes. (there are many causes of flares though of course) and i feel as though im on the tail end of this now.

very interested to see if these non-benzo muscle relaxers help with the last of hte issues, the spasm in my facial muscles, and nerve issues in neck and back.

i feel stronger than ive been and its been a good year of pretty solid upswing.

so keep the faith everyone…….. keep the faith, eat clean, and do what you have to to hang in there…. and help your body restabilize… i feel i am on the upswing now….

edit: haha and i completely forgot to add this to ‘improved update’ i have to figure out how to do that!! sorry guys!!!

Instructions – Posting in ‘Improved Update’

When you go to add a ‘new post’ in the ‘Improved Update’ section click on the ‘+ New’ post as you normally would for a regular post.  You should see the categories box to the right of the area where you type your new post.  Please tick both ‘All Posts’ and ‘Improved Update’.  This will mean your post will be in both sections.

selections

 

If when you go to the ‘+ New’ post to add your post you don’t see the categories box to the right of the screen you will need to click on ‘screen options’ – top right of your screen on the page that you are on to add a new post-  and tick the following:

screen options

 

This will bring up the categories box and allow you to post in ‘Improved Update’.

Please let us know if you need any help with this.

 

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.