Anti migraine nightmare

My GP recently convinced me to try an anti depressant  – Pamelor/nortriptyline. He thought this would be a good match since it also prevents migraine.  He assured me it was mild, even prescribed to children.  I gave it a try. One 10 mg capsule Saturday night. I woke at 3:30 am with a severe migraine, which I still have and it has been 3 days.  Of course as I did my research, migraine is a side effect. The really scary part is the the half life of this drug is 16-90 hours! That means it could stay in my system for over a week. Before Botox, my body could handle trials such as this. Now , I most certainly react and it is not easy. I know this, but somehow weaken at the possibility of relief.  I pray that one day soon, I can be free of this toxin. From now on , I’ve got to stay  calm, know that my physiology has changed, and say no to drugs!

Has anyone tried Ayurvedic remedies? I’m thinking Asheagandha  for anxiety.

Please let me know .


Hi everyone, I would like to ask those of you who have  lost a weight and maybe keep losing fat if you checked your Leptin level?

One of the side effects of botulinum toxin is metabolism problem – in some leaflets even named as Anorexia.

I have now checked mine because I do eat but still lose fat, and my Leptin level is higher causing  my metabolism work non stop no matter how much I eat. What’s weird I do feel hungry which in Leptin high levels should decrease my apetite.

I wonder if anyone else has similar symptoms?


This is in response to the last post from vu. Prednisone is helping me with autoimmune problems. You could try it and quit if it does not help. Read about thyroid and see that the ranges doctors use are not always optimal. Look up “Stop the Thyroid Madness” and “Root Cause”.

Epilepsy atack

Hi all, I  have been tested for small fibre neuropathy plus motor and autonomic neuropathy. I have done biopsy to confirm it. I am also diagnosed with dysautonomia, for very long time I tried to avoid any medications apart ocasionaly benzodiazepines when I had really bad stiffness. Last week I have been in bed already when just like that my legs start to shake, then I got tremors in my whole body and really bad burning in the back of my neck which went down to my lower back and ribs, the burning was like a fire and I got high temperature in 10 mins. I thought it will go away soon but it went that bad that I ended up in hospital with ” epilepsy like atack” . My daughter could not hold me down and my mother couldn’t check my BP because I was jumping so bad. My face went white and blue around nose and lips , also my hands and arms were white with livedo reticularis all over . In the same time I had huge muscles spasm in my entire body, I could not stand the pain from thightening muscles.
In hospital I had lumbar puncture, blood work and tk of my head. Of course they found nothing , blood  work showed muscles and heart enzymes – CK and troponin t elevated but no heart atack. After few days they came back to normal but my mioglobin is low.
few days later I could feel it coming again so I quickly took diazepam ( two tablets – 4 mg) because I was that scared to have it as  bad again.. this time I have managed to stop this evil tremors quicker but the burning came as bad as that time and this time also in my both arms . I think it is neuropathy geting worse and worse, I have been told to start medication and got pregabalin plus methylprednisolone and I still did not take it because I’m so scared. My muscles and skin keeps atrophying and I have no idea what to do. I am trying to find out if Methylprednisolone could help to stop my tissues wasting and also help my blood vessels which are also wasting! The nurse who gives me IV fluids said I have no blood in my veins and they are breaking cause are so weak.
I also have very low blood flow to my head and neck, I wake up flat and white with terrible pain in te back of head and it is worse day by day.
I wonder if it is not some kind of autoimmune reaction in my tissues because I had lots of rashes and IgE elevated which is when there is allergic reaction. I have done lots of autoantibodies tests but nothing has been found apart that IgE and anti TPO – 1300
but all endocrinologists says I dont need treatment for Hashimoto as long as my ft3, ft4 and TSH are normal..
I am very bad and keep deteriorating and I feel lost. The time does not do good for me , it is actually oposite. I have dents in my legs, on my belly on both sides  under my ribs , chest, back, neck, my hands and feet look like anorexia patient and my face is almost gone. I have lost and continue losing all fat from everywhere. Skin, hair, nails are dry and look like ischemic. My legs still get blue in standing from blood pooling down.
Please if anyone tried or heard that steroids like prednisolone or Methylprednisolone helped to anyone please could you let me know.. or maybe there is anything else that helps..
i have also checked my vit b12 and it is too much in my blood , like it does not get into my tissues but circulate in blood.
I forgot to write that my CRP nad OB is higher  now, not much but it is and I also suffer from pain in my all joints but again no any antibodies been found.  I lose my hearing and vission is so much worse too.  My skin on the face look like there is no blood , brows dont grow back and skin is red infamed and peels off. I am almost bald now.

I was so hope it will get better in time but In my case I am more sick.  I am now 26 months out.

God bless you all..


I have small fiber neuropathy from the neck down after receiving botox between eyebrows and filler in face and under eyes in April.  I want to know if anyone takes anything like lyrica or neuron tin and if they have seen any improvement in symptoms over time. I am really having a hard time with this and am now on anti depressants and sleep meds. Any encouragement would be welcome


Attorney. Lawyer. Lawsuit. Message me.

Hello. I’m now 11 months out from my terrible botox experience. I’m looking for people with similar experiences as me who would be willing to let me give their information (or their situation, date of injection, diagnosis etc to start) when contacting attorneys.  Following detrimental botox injections I was hospitalized with botulism as well as autonomic dysfunction and respiratory failure on exertion as well as abnormal heart rhythms. After 3 months of home oxygen I was then diagnosed with heart failure. I’m still on medications to help and have an array of other side effects. 11 months out I’m positive I have permanent damage and I’d like to pursue this. Please email me privately on here. Thank you.

Brand New Article proving what we already know

Botulinum toxin may travel further than expected in nerve cells

August 4, 2016 By David Tenenbaum

The botulinum toxins are among the deadliest substances on Earth, and two specific toxins — including the popular drug Botox — have multiple uses for treating many neuromuscular conditions, including frown lines, disabling muscle spasms and migraine headaches.

The botulinum toxins cancel nerve signals to the muscles, creating paralysis that can last for months. Given its extraordinary toxicity, doses are typically measured in trillionths of a gram, and targets are carefully chosen to silence only the desired motor nerves.

When Botox and related botulinum drugs entered the market, “the idea was that they are safe to use, they stay where they are injected, and you don’t have to worry about toxin going to the central nervous system and causing weird effects,” says Edwin Chapman, an investigator at the Howard Hughes Medical Institute and professor of neuroscience at the University of Wisconsin—Madison.

Photo: Edwin Chapman

Edwin Chapman

The concern that this powerful toxin can move beyond the injection site was reinforced in 2009, when the Food and Drug Administration added a prominent warning to prescribing information “to highlight that botulinum toxin may spread from the area of injection to produce symptoms consistent with botulism,” including “unexpected loss of strength or muscle weakness. … Understand that swallowing and breathing difficulties can be life-threatening and there have been reports of deaths related to the effects of spread of botulinum toxin.”

Additionally, physicians have seen puzzling results from treatment, adds Ewa Bomba-Warczak, a doctoral candidate in neuroscience. “In many cases, after an injection for a disabling spasm of neck muscles called cervical dystonia, there is no change in muscle tone but the patient finds relief and is perfectly happy. That result can’t be explained by the local effects.”

In a study published today (Aug. 4, 2016) in Cell Reports, senior author Chapman, first author Bomba-Warczak and colleagues present clear evidence that toxin is moving between neurons in a lab dish.

The study looked at mouse neurons in wells connected by tiny channels that allow growth of axons — the long fibers that neurons use to communicate.

Photo: Ewa Bomba-Warczak:

Ewa Bomba-Warczak

Photo: Jason Vevea

Jason Vevea

In tests of two botulinum toxins, the researchers saw toxin molecules entering the injected cell, as expected.

Once inside a neuron, botulinum toxin cleaves proteins responsible for fusion of chemical containers, known as vesicles, with the plasma membrane. This fusion event releases chemical signals that underlie communication with muscles, and the inability to fuse leads to the temporary paralysis caused by botulinum toxin.

Using antibodies to identify fragments of the damaged proteins, Chapman’s group showed that toxin molecules were moving to nerve cells in wells that had not initially received the harmful molecules. “Every time one fraction of the toxin acts locally (on the first nerve cell it contacts), another fraction acts at a distance,” says Chapman. “It’s unknown how far they travel, which likely depends on the dose of toxin and other factors.”

Co-author Jason Vevea, a UW–Madison postdoctoral fellow, produced videos showing tagged molecules of botulinum toxin moving along the axons connecting neurons.

Botulinum toxins were first described in the 1800s, and have long been a subject of research at UW–Madison. Allergan PLC, which markets four versions of botulinum toxin, reported global Botox sales of nearly $2 billion in 2015.

Graphic: Botulinum diagram

Injected botulinum toxin is taken up in axons and reaches the cell body, shown in green, before being transported into different neurons, shown in red. DIAGRAM: EWA BOMBA-WARCZAK

By finding that toxin molecules don’t always stay where they are injected, Chapman says the Wisconsin study answers a long-standing question about mobility, but raises several more. “We have seen that these toxins enter neurons at the injection site, causing the desired local paralysis, but Ewa and Jason have shown unambiguously the existence of a second entry pathway that takes some of the toxin molecules to other neurons.”

The research, done in a lab dish, removes variables that have plagued similar studies performed in animals, Chapman says. “We wanted to see if we could build an in vitro (in a dish) system that allows direct visualization of this putative movement, in a way that’s simple, easy to interpret, and unambiguous. Do they move, or do they not?”

Chapman wonders about the effects of extraordinarily powerful toxin molecules that travel the neural networks. Local effects have, until now, been deemed the sole effects. But could part of its effects be due to the transported toxin?

“It’s an exciting prospect, supplanting a $2 billion drug with a safer drug.”

Edwin Chapman

These questions could be answered by genetically engineering the Clostridium bacteria that make botulinum toxin to alter the toxin’s structure, Chapman says. “We may be in a position to mutate the part of the toxin that attaches to a receptor on the neuron so it can only enter the local pathway, not this new pathway we have described.”

If only the local effects matter for medicine, tomorrow’s versions of this ancient toxin molecule may be able to alleviate symptoms from wrinkles to severe muscle spasms without moving beyond the target neurons.

“I have a hard time imagining that any physician is going to want to inject something they know can move about when they have an option to use something that stays put,” Chapman says. “It’s an exciting prospect, supplanting a $2 billion drug with a safer drug.”

– See more at:

Botulinum toxin may travel further than expected in nerve cells

Seeking help…

Is there anyone located in Oregon with advice for ongoing adverse affects from Botox? I have been to every doctor I could get in to. GP, neurologist, Psychiatrist, ER .  None of which have any ideas, answers or advice.  I suffer from severe anxiety, aches in my bones, muscle atrophy, weight loss (40#), no appetitive, chest pain, and nausea. I am 6 months out from last Botox injections. Will this ever end? This is truly a nightmare. If only there were a doctor that would show an interest in figuring this out. I have called Allergan several times. Their answer, “We recommend you contact your provider for this, we have no data to support your symptoms.” Oh my gosh!  Is there any research going on? It seems there are a lot of people suffering.

Someone, please help!

Los Angeles botox meltdown

Is there anyone out there in Los Angeles? Three months ago I had injections and three weeks later I had tingling in my toes and fingers. I went to the Dr. and told him about this and he pulled out the pamphlet and said there was nothing in there about that. Well, actually, there is. It’s a side affect of overdose which is something I didn’t realize at the time. Since then the tingling and nerve pinging spread through my small fiber nerves. No muscle damage, but from what I hear that’s actually preferable. I had a  non cancerous skin spot turn cancerous suddenly with nobody thought was connected, but now I have another one. The Derm checked my face two weeks ago and it was fine and now I have basal cell again. My ANA is through the roof without a diagnosis. I KNOW what this is. Nobody believed me at first and now the Drs. are caving. Unfortunately not one of them knows what to do. One of them sent me to some Dr. who has a website but no recommendations and sounds a bit wacky and is out of my budget. A budget which has nearly bankrupted my family through CT scans and MRIs and blood test and x rays. Does anyone have any protocol they can recommend or words of encouragement. I am about to enter NPI, the Neuropsychiatric Institute at UCLA for help because I can no longer cope and my family feels helpless.  Does anybody have any words of comfort or advice for me?

Has anyone tried Ayahuasca?

I am 13 months in and am having a bad flare up at the moment. My  relapses usually last about 5 days to a week but this one is over 4 weeks now . It always starts with bad anxiety and then as the anxiety subsides all the eye, ear and brain and nerve symptoms kick in. I have  tried almost every supplement and vitamin  known to mankind to rid my body and brain of this toxin . Besides Sxeletium Seraphos and Picamilon  which I take for the anxiety nothing else seems to help  and I am very sensitive to most pharmaceutical drugs. Benzos for instance do not work at all on me . Many pharmacetical SSRI.s for instance only work on about 70 percent of people so the rest of us need to find alternatives.  I have recently tried cannabis oil but it does not help either. I have decided that I might try Ayahuasca. It is an ancient South American potion that has been used as a powerful healing substance for thousands of years  and there is now renewed interests in its amazing healing properties.  It  has been successfully  used to treat psychological/emotional issues   such as ptsd, depression and anxiety but there is now some fairly concrete evidence that it seems to have had some good results on  many physiological  issues. The Ayahuasca is administered in a controlled environment by experienced practitioners  and is relatively safe when proper diet and pre-preparation has taken place .  As botox poisoning affects the mind body and soul  I think there would surely be some benefit in this treatment. I am researching on how the  Ayahuasca may react with the botox  itself but not much is available on the subject. I am going to contact some clinics abroad to discuss this with people who may have some idea.  Ayahuasca is illegal here in the UK but legal in many other countries  which have  these clinics. . At this point legal means nothing to me  as botox is legal and is deadly so my mindset has changed drastically as to who one can trust.  Pharmaceutical company pressure probably got Ayahuasca  banned in more corrupt countries like the UK and US  where lobbyists grease politicians palms handsomely.  It works and cant be patented…shock horror. Sorry to rant but I hate the fact that much research is blocked by big pharma scared of losing profits. I work in mental health so am very aware of what goes on as far as banning of substances that cannot be patented are concerned. Oh well I will update when I find out more. I am at the point now where I will try anything to get rid of this hideous poison I have mistakingly put in my body over and over again .


now i can’t cry…

Last week I posted  about small fiber neuropathy after xeiomin injections three months ago. A week ago I realized that when I cried (over this and my old life being gone) no tears come out. I am going to the eye dr. today, I tested negative for Sjogren’s and my eyes are not dry, but my gland doesn’t seem interested. I am so terrified that this is also the Botox and that the damage is spreading to other areas of my body. I have an appointment with an endocronologist in September but I am so frightened that I have killed myself. I went to a new Dr.. who is very well known but he was very aggressive with treatment. I look great, but I am afraid I am slowly and painfully dying. Can anyone please console me? I am having very very bad thoughts. Will this ever end or is this just the beginning? I can’t live this way, always afraid, always in pain, scared of the next problem. I am now on lyrica, which helps a little and Ativan for anxiety. I am so ashamed and wish I had a time machine so I could slap myself. I was happy with the way I looked before and never should have gone to someone new. I had a bad feeling when I walked in and I did it anyway.

Bones, Muscles and Fat
Klaudia007, will you tell is more a out the Polish lady and what has happened to her bones, muscles and fat? I tried to respond to your post but it didn’t work. Thank you, Klaudia007.

This is a horror

I received botox injections on december 1, 2014 and my life has not been the same since.

In first year I didnt get much help from polish doctors. Despite the fact I had result from my blood test (toxin was found in my bloodstream 7months after injection) they lied to me that Im completely healthy person and I have mental problems! I was treated like piece of trash!

In second year I got the medical documentation which confirmed my symptoms and showed that all my neurological issues are connected with botox intoxication.

Now i was diagnosed with polineuropathy, muscle and fat atrophy and also brain damage (demyelination).

My face and head are sunken and small, my body has also been affected. My cheeks dropped, I got sunken temples, my nose got smaller, my eyes were smaller, even my forehead is flat now. The sides of my forehead and head are totally sunken. ALL OF THE FAT IS GONE FROM MY FACE.

NOW im making more testing to check for autoimmune disorders. I also have many neurological symptoms like dry eyes, head pain, muscle weakness etc. Im worried that I have fat necrosis.

As you can see Im totally destroyed. I think I will put here some pictures of my “new face”, but believe me I LOOK DRASTIC NOW, LIKE I HAVE ANOREXIA OR SOMETHING. My polish neurologist told me that there is a risk that I WILL DIE FROM SERIOUS BOTOX SIDE EFFECTS. IM ONLY 31.

I found 53 old woman from Poland. She is 7 years after injections now and had similar symptoms to my in HER 2nd year. SIMILAR TO MY SYMPTOMS AND VERY UGLY (VERY UGLY I LOVE YOU;)).  SHE FEELS MUCH WORSE NOW!!

Her body and face didnt back to normal. The toxin destroyed even her bones!!

Its a horror.

No reports done by anyone to Allergan?

Hi everyone, I had an injection 4 months ago and my life was turned about upside down, 3 days after major stuff started: chronic insomnia(going from sleeping 9 hours a night), heart palps/racing, anxiety/panic attacks (never had them in my life), muscle twitches and lots of other symptoms.

When I reported this to the clinic that did the Botox injection they have filed a report with Allergan around this around my main symptoms – but said there are NO reports with the same symptoms as me reported with Allergan?? I keep reading most of you have reported this, so why wouldn’t they have reports around insomnia, brain fog, anxiety etc.

Feels like Allergan is keeping some closed doors to protect themselves?:( Money speaks maybe?

It was insinuated by the clinic that people on these boards are just people with other symptoms using Botox as a scape goat.

Is there anyone that has been to a doctor who has been able to point to Botox being the culprit?