Botox Support Community

Hello to everyone who has been trough that,

Eve — Fri, 18 May 2012 09:38:28 +0000

I am 36 years old and I had my first – last Botox done on 28.03.12 . I also had a Restyline injection under my upper lip very small amount. A monght later a small swelling appear under my upper lip where the injection was done, my forehead was so hot, and tight and I had got hot flashes all over my body. On 7.05.12 at night I had breathing difficulties that is why I ask my husband to call the ambulance. I had got panic attack because of the symptoms. I did not end up at the hospital but the doctor said probably the injection has not been done incorrect that is why I have got this swelling on my lip. I tought that is the reason for my symptoms. On the next day I contacted the doctor and she advise me to take some nurofen and piriton tablets. I was taking them for about a week but nothing really change. Then I went to see another doctor at the same clinic and he prescribe me antibiotic for 5 days. During that time I have had same symptoms – hot flashes at night, insomnia, dry mouth, headaches. I sow the doctor this Tuesday and she reassure me that everything is ok after all the symptoms I have got and she gave me another antibiotic and painkiller for the swelling on my lip this time she said it might me a herpes or cold sore. Last night i read a lot about this type of botox and i realised that the reason for my situation is not the swelling on my lip but the botox. I have an app tonight at holly house clinic to see another doctor and i will see what is going to happened. I am so scared and confused but i am trying not to thing about that too much during the day. I will be very happy if someone read my story and give me an advise how to cope with that and how long it is going to last. xxx

Arm pain-despair

Chgofit16 — Wed, 16 May 2012 14:23:33 +0000

I am 17 months out and not doing well at all. At about 16 months, arm pain returned for about 2 weeks, then I started with new vision problems, once that ended the rash this all started with returned, and as of Sunday I can not left my left arm and have unbelievable nerve pain. This is the worse pain I have had so far. Also the 1st time I have lost function. I feel like I am starting over. My original stomach problems have also returned. I have not had a pain-free day in 17 months. It seems to move from one area to the next. I am thinking I will never recover. I don’t know where to turn next.

Any advice for swallowing difficulties?

Trisha — Wed, 16 May 2012 04:36:42 +0000

Just wondering if anyone had any advice/remedies for swallowing difficulties? Im day 15 into this now and finding it harder and harder to swallow much at all. This coupled with the fact that my throat feels like its about 2mm in diameter is making me miserable. Did anyone find that this symptom reduced after the first few weeks?

Better!!!

amanda — Mon, 14 May 2012 02:13:33 +0000

Hi everyone. I don’t have much time to write at the moment but I did want to let all of you know that, at ten months, I’m pretty much back to normal–some intermittent and extremely infrequent tingling on either side of my spine–but that is pretty much it. I can drink coffee again, exercise again, connect again…I can sleep again, focus again, operate a vehicle again…so, for all of you out there in the throes of this nightmare, please know that you’ll make it out the other side eventually. Life will be good again. It’s only a matter of time.I’ll continue to pray for those of you that are still suffering. You’re not alone and you’ll be okay in time–Don’t lose hope. The human body is remarkable and has a tremendous capacity to heal itself.

24 Month Update…..

Soloist — Sat, 12 May 2012 05:30:53 +0000

Well….it has been 2 years since my injections of Dysport. I wish that I was typing this in the “fully recovered” section of this website, or even “almost recovered”, but, unfortunately, that is not the case for me. :(
Those of you that have been following my journey know that I am still suffering from a major relapse of my symptoms at 17 months after feeling almost back to normal for a few months. I, now at 24 months, feel that I have been at a plateau without much improvement for the past few months. Again….this posting is not to cause fear or alarm for others just starting with their symptoms….as everyone has a different
path, body chemistry and length of time for healing. Just as so much of what is happening to us is not understood….the same goes for our recovery. There doesn’t seem to be a true understanding of any of this….and there is not a set schedule for everyone…..and what has
worked in recovery for some doesn’t work for all.

However, with that being said…….what does seem to be common
are our symptoms. And…LOTS of them. In thinking what I could possibly post to be of any help at the 2-year mark….is perhaps just list the myriad of symptoms that I have experienced and/or am still experiencing. Again, those of you just starting with this ordeal can use this reference list as a guide to what you might be feeling…and wondering…..is THIS (….fill in the blank) from my toxin injection….or has anyone else experienced THIS (….fill in the blank)??? Well….scan the list of things…..and most of us on here have experienced many of these symptoms…and more. I have had all of the below……and still have most of them intermittently. I have them listed by category.

HEAD

Head pressure on sides of head (vice grip feeling)

Feelings of “worms” crawling inside head

Feelings of brain spasming; tightness within the head cavity
to the point of not being able to think straight

Headaches…both dull ache and migraine

Overall “numbness” or feeling that you have had novocaine
shot into your brain

Numbness in temple area; putting pressure on this area
causes nerve sensations down back of head

Lightheadness

“Buzzing” or vibration feeling in head, mostly at night when
trying to sleep

Extreme pain in the back of the head (area where the skull
meet the spine)

Slight head bobbing with the pulsation of my heartbeat

Feeling of sudden “blood rush” from the back of head to the
front of brain

Feelings that you are having a stroke….that you are “not
there” and can’t communicate

FACIAL

Muscle spasms in forehead, so tight that at times cannot open my eyes

Muscle spasms in cheeks; corners of mouth would pull back
right side of face involuntarily

Forehead injected muscles when started to regain
movement….the amount of movement would be intermittent; would sometimes be able to move muscles and then other times would be paralyzed again.

Droopy eyelids

Twitching eyelids, nose, below eyes, chin, corners of mouth (sometimes mild and sometime violent)

Increased number of veins and wrinkles in forehead

More pronounced muscles above eyebrows (once movement was
regained)

VISUAL

Intermittent blurred vision

Sensations of eye movements moving back/forth quickly with
eyes closed at night when trying to fall asleep

Muscle surrounding eyes twitching at night with eyes closed

Increased number of eye floaters

Abnormal pupil size…or one eye being slightly different size than the other

Globs of “gunk” floating in eyes

Redness in eyes

“Flea-type” movements seen in peripheral vision

“Static” black/white snowy-type vision at night

Extreme dry eyes to the point of not being able to move eyes

Eye pain behind eyes

Eyes not moving back/forth at the same time or some loss of range of movement

Sensitivity to light

Difficulty focusing on things in distance (uncomfortable
feeling)

Objects in distance appear to “shake”

Episodes of eyes quickly jerking back/forth when lying down
and looking sideways

Red/purple squiggly lines seen in center of vision at night
when trying to fall asleep

SPEECH

Slurred speech

Inability to get words out or think of words to say (during
times of head feeling tight)

COGNITIVE

Typing words that are different than what is being thought

Difficulty having prolonged conversation

Difficulty with following timeline of events….have to write
things down to understand

More forgetful

Difficulty multi-tasking

Taking longer to do things

Difficulty having conversation in groups of people

MUSCLE

Throat would tighten and close up; throat spasms

Tightness, pain and weakness in back of neck

Weakness in forearms

Forearm spasms

Muscle spasms in neck, shoulder blade area, upper and lower
back.

Weakness in back muscles.

Muscle spasms and weakness in thighs

Arms tighten up and move inward towards chest with wrists
pulled back; head pulls back with chin upward toward ceiling. Body would involuntarily pull in jerking
motions. (Spastic-type movements)

Prolonged cramping in feet, sometimes creating inability to walk

Muscles tighten when touched or rubbed

Overall body weakness

Intolerance to exercise (would worsen symptoms)

Abdominal pain and weakness

Incontinence

Inability to push bowels (could not go to bathroom)

SENSORY

Intermittent increased sensitivity to smells

Burning on tip of tongue

Constant feelings of nerve “pulsations” through your body

Lowered level of pain threshold

Cannot watch TV or listen to music due to sensory overload

Extreme sensitivity to movement (cannot watch things moving
fast)

SINUSES

Clogged feeling in sinuses

Intermittent increased sinus drainage (sinus drains like a
faucet…out of nowhere)

EARS

Plugged feeling in ears

Ringing in ears

Constant popping in ears

Pain in ears

Sudden loss of hearing in right ear; gradually returns

Extreme sensitivity to loud noise

MOVEMENT

Vertigo, lasting 6-8 hours

General feeling of dizziness

Dizziness when turning head or body too quickly

Abnormal gait (swinging legs out in front when walking)

External tremors (extreme movements of head
(back/forth/up/down))

NERVE

Intense nerve “sensations” down neck/spine, at worst lasting for hours

Nerve “pulsations” down neck/spine and into arms

Intense nerve electrical-shock type feelings in various
parts of body

Tingling/numbness in hands, feet, legs

Tingling/numbess in forehead and down sides of face

“Buzzing” feeling in legs/feet

Internal “shakiness”/tremors

Sharp needle-prickly pain in both heels

Painful sensitivity in genital area

Intolerance to cold or extreme heat

MISC

Mild anxiety at onset; extreme anxiety at relapse

Panic attacks

Mood swings….feelings of deep depression that hit suddenly
and leave just as suddenly

Crying spells that are not set off by any particular feeling
or event

Insomnia; loud buzzing sound inside head when first falling
asleep

Extreme dry mouth

Naseau lasting forweeks or can come/go several times in a day

Diarrhea or loose stool

Extreme fatigue…..again that can come/go quickly

Intolerance to alcohol

Extreme intolerance to sugar and some foods

Sensitivity to medicines, vitamins

Sensitivity to chemicals

Racing heart; heart palpitations

Sharp pain in center of chest

Intermittent shortness of breath

Hot flashes/cold chills

Severe back pain/sciatica

Joint pain (shoulder and knees)

Tightness in chest; heaviness; difficulty breathing

Burning, itchy rash down sides of legs, on back, stomach
area

Inability to drive (to do sensitivity to movement issues)

I THINK I have remembered most of them! Yes…..this list is extensive…..and just getting through the day can be quite challenging…….as most of you know. I just keep trying to take one day at a time….and try not to think about how long this may take to be fully recovered.

I am still seeking various practitioners to offer any sort
of help in the recovery process. I recently had brain “mapping” done….which is used as a diagnostic and treatment tool for those who have various brain disorders and/or brain injury. I am also seeking assistance from a naturopathic physician and mind/body practitioner….as well as waiting results of tests done by a chiropractic neurologist. This….on top of the continual monitoring being done by my regular physicians. I am continuing a gluten and dairy-free diet. It is hard to say it if has helped with symptoms or not…..as again, I haven’t seen any noticeable improvement since starting it….but given that I do believe that the neurotoxin has set off some sort of inflammatory response in our bodies…..I am going to continue with that. I am still unable to drive or work full time, and haven’t been able to resume any sort of social schedule yet. On top of dealing with all of the symptoms, the
isolation that results from this illness is yet another thing that we end up having to deal with. Hence, this is why discussion boards like this are so important. ….if only to post things like this….and hope that in doing so…..there is some help and/or connection that is
being offered/made with others.

I hope/wish for healing for everyone.

Interesting background and simple solutions

Cameron — Sun, 29 Apr 2012 06:27:56 +0000

Hi, I found this video and thought that it might be of interest to some of you.

A mandatory checklist for the administration of botox may be a simple solution to providing REAL informed consent.

TV show – Botox investigation

Cameron — Sun, 29 Apr 2012 06:22:53 +0000

Hi all,

Here is a great news article from 16×9, with interesting interviews and information.

9 week mark!

sam uk — Fri, 27 Apr 2012 16:18:12 +0000

Hi Ladies,

Just a quick update on how I am doing at the 9 week mark. Well I am feeling 100 times better than I was 2 weeks ago. My appetite has returned completely this week and I have put back on 3 lbs of the 11 lbs that I lost. Unfortunately my sweet tooth has also returned and I am trying my hardest not to eat chocolate but am having plain biscuits instead. I have only had 1 really rough day this week and am out and about again shopping, walking etc. I have not returned to work (had 2 weeks off) as I feel a bit fragile and my job is very stressful and I need to be feeling 100% before I go back (hopefully in a couple of weeks). I think this rest has done me the world of good and also the acupuncture and cupping once a week is really helping. I feel that the main reason I am feeling so much better is because I have totally calmed down mentally about the whole nightmare and when I feel the anxiety creeping in I take long deep breaths and it passes. I am on no medication at all only supplements of milk thistle, vitamin c and multi vitamin each day. I might try and return to my zumba class next week as I really miss it but my legs still feel a little tired. My goal is to be completely recovered for my family holiday abroad at the beginning of August! I need to thank my mum who barely left my side over the first few weeks and listened to me moaning and crying about my symptoms – she is one in a million. My husband and 2 young children have also been great. My forehead is moving again and wrinkles are returning so I can only hope that the toxin is leaving my body. I will give another update soon to give hope to anybody that is near the beginning of this journey and feeling rubbish. I would like to take this opportunity to thank Annette and Cameron for this site as it has been my life line for the last 2 months. We will all definately get better, keep a strong mind everybody it works wonders!

Do you trust your Dr?

Annette — Fri, 27 Apr 2012 02:16:41 +0000

I found an article in ‘Time’ magazine that stated the following:

‘We consistently rank doctors among the most trustworthy members of society, but it seems the respect isn’t mutual. In a 2009 survey of physicians around the US, a surprising percentage said they weren’t completely honest with their patients. That included sugarcoating patients’ prospects for recovery and failing to disclose financial conflicts of interest. Fear of malpractice suits and well-intentioned concern may be driving the fibs, but patients say they’d rather be trusted with the truth’

34% of doctors don’t feel required to disclose medical errors to patients
55% of doctors admit to being more positive about patients’ prospects than was medically justified
10% of doctors said they had told their patients something untrue in the previous year

(Sources: Journal of Experimental Biology, Health Affairs; Psychological Science in the Public Interest; New England Journal of Medicine)

I am not trying to degrade or attack medical professionals. They are after all just like us – human! Being human means that we make mistakes. What I can’t accept though is that if you know the truth and you don’t tell the truth! The truth should be told……as a Dr it’s part of your duty of care. If you didn’t know the truth and you made a mistake – well then help fix it – learn from it! If you don’t know the truth and you continue to make the same mistakes over and over again or you do know the truth but just decide not to disclose it…… well then you shouldn’t be a Dr! One of the valuable lessons I have learnt from this experience is that Drs/health professionals can only give us ‘their’ knowledge/opinions based on ‘their’ experience and competency. We need to also take responsibility for researching what happens to our bodies to the best ability that we can. However when it comes to Botox/Dysport the information is available to Drs – it’s not that hard – we all found it and we didn’t complete a 6 year medical degree. If a Dr injects this toxin there is NO excuse for not giving the appropriate warnings. This is black and white and I can’t understand why there are not policies/rules governing this to protect patients……….there are rules and fines for letting your dog s**t in the park or on the beach yet it seems to be an incredibly hard process to get answers or consequences when a Dr injects a toxin that has the potential to ruin someone’s life.

almost 5 months

kye06 — Fri, 27 Apr 2012 01:16:18 +0000

Hello everyone, my daughter had her first “relapse” type of episode today. This week she has been extra tired and yesterday she told me she was getting waves of ringing in her ears and had a very dry mouth. This morning she started having tingling and a sensation of “spiders” crawling on her arms and legs, and then she felt like she was cold from the inside out and her heart was racing. She tried to do her normal routine, but the symptoms were too much and she wound up in bed wrapped in her heating blanket. After sleeping on and off today in the warm bed she is feeling a little better tonight. We learned a couple of things today: the nerve tingling/cold feeling goes away quicker each time and it doesn’t progress to the muscle weakness like in the beginning, and that she had subtle messages this week that she was pushing herself too much but she ignored them. Recovering from botulism is tough work and a long process, and I will just have to keep reminding her to take it slow. Even though it was scary at first, we now understand that she might have more of these but they get less and less until they don’t come back and that is our goal!