If you have found this site post Botox injections and you are experiencing side effects please register and share your story. You may have gained absolutely no assistance for these side effects and may have even been told that ‘it is all in your head’ and there is no way that Botox could have caused these symptoms. Trust me you are not going crazy! Read our stories and become a member of a group of supportive people who are trying to navigate their way through this unexpected journey.
If you have found this site prior to Botox injections well then you are one lucky person! Read our stories and make an INFORMED decision.
Steps to help you find your way around the site:
1. Register via the link. Remember your profile wont appear in the members area (the link for this is along the top of the home page) until you have created a ‘post’ – if you like just copy and paste the info you placed in the registration process into a post.
2. The ‘Information’ section (the link for this is along the top of the home page) contains articles on Botox and also information on how to report your side effects to your health board (if your country is not listed here and you have the relevant information please email this to us and we will update our site).
3. The ‘Members’ section (the link for this is along the top of the home page) contains all members. If you click on read posts next to each member you will find in date order all the posts written by that particular member and the comments associated with this post. You may comment on any post.
4. The ‘Discussion’ section (the link for this is along the top of the home page) is for particular topics that you feel are going to assist all members. People can comment on what their thoughts are eg ‘How does the toxin spread’. Please email us your topic and we will start a thread.
5. The ‘Helpful Hints’ section (the link for this is along the top of the home page) contains particular topics that you feel directly assisted with easing your symptoms eg ‘Massage’. Members can then comment on this topic allowing other members to see their experiences in relation to this therapy.
6. The ‘Registration’ section (the link for this is along the top of the home page) contains the link and information in regard to becoming a member.
7. The ‘Video’ section (the link for this is along the top of the home page) contains videos that we think are relevant and members can make comments. Please send us any videos that you feel would benefit the site.
8. In the section under Welcome………you can ‘Add Posts’. This allows you to update the site and also ‘tick’ the relevant ‘symptoms’ you have at the time of your post in the right hand side under ‘tags’. On the left hand side of this section you can also ‘edit profile’ which is the information that you provided in your original registration. Also in this section you can manage your subscriptions under ‘subscribe2’. In this area you are able to select which ‘posts’ you would like email notifications for. If you wish to be kept up to date on all additions to the website tick ‘Select All’.
9. In regard to email notifications for comments this works a bit differently. If you are the author of a post you will automatically receive notification of all comments added to your post. If you comment on a post that you were not the author of the ‘subscribe’ box is automatically ticked so that you will be notified of any additional comments – if you do not wish this to happen please remove the tick from this box. If you read a post that you are not the author of and do not wish to comment but would like notification of any more comments made to this post then click on ‘subscribe’ at the bottom of the page and this will automatically update your subscriptions to include the comments on this post.
10. You can also search for posts by ‘symptoms’ located on the right hand side of the home page. Click on the symptom that you wish to find relevant posts for and this will show all posts that had that particular symptom ‘tagged’ when published. There is also a search bar at the top right of the page and you can enter key words to locate relevant posts.
11. The ‘All Posts’ link under the heading ‘Topics’ on the right hand side of the home page, and the top of the page, will show you ALL posts ever published in date order. You can also click on any post and read all attached comments. This is a good place to check and see that you haven’t missed any posts.
IMPORTANT – Please remember that at the bottom of each page you can select ‘Older posts’ or ‘Newer Posts’ – just because you have come to the bottom of the page doesn’t mean that there are not anymore posts.
The scrolling ‘Recent Posts’ and ‘Recent Comments’ are self explanatory and show the most recent additions to the site. You can also privately message members without revealing your email address. This is located on the top right hand side of the home page.
Please find below the link to ‘Fully Recovered’ and ‘Almost Recovered’ threads. If you feel like you can add to these threads this would be very encouraging to all of our members.
This is a post by ‘Soloist’ and I believe summarises the issues perfectly (it was written in response to a health professional joining the site):
While the discussions and comments here can be highly emotional and may at times seem irrational to a “normal” person, we hope that you are able to understand the depths of despair that living with a chronic, debilitating, painful and literally tortuous illness can take a human being. Most medical professionals stumbling upon sites such as this will easily “write off” our stories and conversation….citing that weight cannot be put on experiences as told by a bunch of people for which their pscyhological backgrounds and medical histories are unknown. While I completely understand that rationale, our stories here combined with those of other websites in existence over the past several years….along with the tens of thousands of reported cases of adverse events to the FDA…..the rationale that should be questioned is that of the medical community NOT taking our experiences and stories seriously. What should be questioned is the complete denial and failure that the medical system had shown to protect and provide for those of us who have been severely damaged by the use of this toxin. What should be questioned is why there is a Black Box warning on Botox indicating that the spread of the toxin CAN happen (and there is certainly enough scientific data to prove that it does)…but then when it DID happen to us we are told that we are crazy and told it isn’t possible? What should be questioned is why we are not receiving proper care and that recognition is not being given for this problem. What should be questioned is WHY the toxin spread is happening…under what circumstances is it happening….HOW can it be prevented…and HOW can those people affected be helped? WE as patients …and “victims”….should not be the ones under scrutiny and looked at with suspicion……the DRUG and it’s manufacturer should be.
While I recognize that perhaps the medical industry is accepting of the fact that there will always be a percentage of people that fall in the unfortunate “side effect” category….and yes, we are those unfortunate people. However, most individuals that make decisions regarding pharmaceuticals and procedures are trusting that they are being told of the true associated risks….and certainly would not expect to be left to manage the resulting myriad of physical problems alone. None of us were made aware of the REAL possibility of the resulting disabilities that we could face. Even the Black Box Warning doesn’t accurately reflect the frequency of such occurrences.
As a physician that injects botulinum toxin for aesthetic purposes, our hope would be, of course, that you would think twice before continuing to place individuals’ lives at risk. Short of that, we hope that you will at least be fully informing your patients regarding the REAL RISKS of the possible spread of the toxin, so that they make an informed decision. Perhaps you have already had patients contact you with issues following their injection and that is what had led you to our site. While we hope that is not the case, we hope that your showing an interest through your registration is a positive sign that you are at least becoming more educated surrounding all aspects regarding the use of botulinum toxin products.
If you would like to discuss any issues privately through direct contact, I (as well as many others) would be willing to provide to you any other information, scientific data, or more details regarding my experience and continuing issues.