everywomanover29

Food, Mood and Women's Health – Be your healthiest, look and feel great!

dystonia

Botox injections (cosmetic or non-cosmetic): are they a root cause of anxiety and panic attacks?

By 38 Comments

botox injections

New research shows Botox injections are being considered for severe depression and bipolar disorder because it stops frowning and this lack of frowning has a positive impact on neurotransmitters and mood. I recently posted this on Facebook and asked this question:

I’m curious if you have had Botox injections or would consider it (for cosmetic reasons) or perhaps for migraines, dystonia, proctalgia fugax or depression/bipolar?

If you have had Botox injections are you happy with the result or did you have any adverse effects like increased anxiety, panic attacks or anything else?

The response was varied with most folks saying they would never consider using Botox for cosmetic reasons, some folks saying they used Botox for cosmetic reasons and had issues and some folks saying they’ve used Botox for cosmetic reasons and love it, and others who have used Botox for non-cosmetic reasons.

All the practitioners who commented have concerns about Botox saying results are mixed with some of their clients having severe reactions and some doing fine. As I looked further into this topic I’ve gained additional insights and my biggest concern for you, and my community, is that Botox can lead to very severe anxiety and panic attacks.

I encourage you to keep an open mind about my Botox concerns if you have chronic anxiety that is not resolving and it started (or got worse) after receiving Botox injections, or if  you’re considering Botox injections.

Anxiety, panic attacks, inability to handle stress, body shaking

I gained my biggest insights from the Botox Dysport (Side Effects) Support group. Someone suggested I look into this group and I requested an invite to join so I could learn more. So many of the members of this support group  report anxiety, panic attacks, inability to handle stress, body shaking and problems connecting socially.  This is what one member shared:

…just joining the dots, I’ve been unwell for a few years since getting Botox but didn’t put it together until having it last week and going into panic attacks / ER.

Since then extreme anxiety and I’ve ended up in a mental health facility on benzodiazepines (ativan/valium). Reactions / withdrawal has been severe, have started to put it all together whilst reading through this page.

I’m realising that my decline, immune system failure (chronic epstein barr) fatigue, loss of motivation, loss of appetite, shaking in my body, muscle atrophy, anxiety, no motivation to connect socially, can’t handle any stress, can’t relax, tinnitus, breathing trouble and the list goes on is from botox…. scared to say the least as doesn’t seem to be a solution, I was worried to get Botox originally and obviously am eating myself up with regret, thought I would share if anyone has a similar story.

There are many similar posts to this one and it’s heart-breaking, especially because they say they are not being heard by their doctors.

I had a short online conversation with one of the moderators and she shared they suspect Botox is impacting the hypothalamic-pituitary-adrenal (HPA) axis leading to high cortisol and causing their anxiety symptoms. Many of the members find relief with Seriphos, which is a phosphorylated serine product I’ve had great success with. Here is my blog post on Seriphos for anxiety and insomnia related to high cortisol.

I asked if any of the members find GABA or serotonin support helpful and for some GABA helps ease the physical tension and for other members tryptophan or 5-HTP helps ease the worry type of anxiety. However for others, the amino acids seem to have a paradoxical effect and make symptoms worse.

I’ve never been in favor of Botox for cosmetic reasons simply because I’m not a fan of putting foreign objects/toxins into the body and because I believe in aging gracefully with confidence. I do find that many women feel the need for cosmetic Botox injections and other ways to try and look younger (such as breast implants and hair dye) because of low self-esteem and lack of confidence caused by low serotonin.

Botox for non-cosmetic purposes

Botox is also used for non-cosmetic purposes. Some of my neurologist colleagues also have concerns about cosmetic use and will only use Botox injections for the following:

  • severe cases of dystonia
  • migraines (to relax forehead muscles)
  • proctalgia fugax /rectal spasms

Botox may also be used for multiple sclerosis (MS) symptoms, pelvic pain and bladder issues, for TMJ, after a stroke and for chronic anal fissures in colitis (sphincter spasms can prevent anal fissures from healing).

I would love to see safer approaches for non-cosmetic Botox injections being researched and explored by practitioners. For example:

Botox for mental health – we can do better with nutritional psychiatry

At the beginning of this blog I mentioned the new research that shows Botox injections are being considered for severe depression and bipolar disorder because it stops frowning. This lack of frowning has a positive impact on neurotransmitters and mood.

A study published in 2018, Clinical analysis of 86 botulism cases caused by cosmetic injection of botulinum toxin (BoNT), reports that botulism is a severe side effect of Botox injections with symptoms including: “headache, dizziness, insomnia, fatigue, blurred vision, eye opening difficulty, slurred speech, dysphagia [difficulty swallowing], constipation, and anxiety.”

The authors report these symptoms occur in the first 36 days after the Botox injections and that all symptoms resolved after botulinum antitoxin serum injections.

This conclusion clearly doesn’t address why there are so many folks in the Botox Dysport (Side Effects) Support group continue to experience long-term severe symptoms.

We also have research reporting a possible connection between Botox injections and thyroid autoimmunity.

I feel we can do better especially with what we know about nutritional psychiatry, the use of targeted individual amino acids, nutrients like lithium orotate, the gut-brain connections and everything covered in my book The Antianxiety Food Solution (my Amazon link) and on this blog.

A note of appreciation

I’d like to end with a note of appreciation to everyone who commented on my Facebook post, to the members of Botox Dysport (Side Effects) Support group on facebook (with over 5700 members as of this writing).

I’d also like to thank Diane Kazer for asking bold questions about Botox injections as part of her Non-Toxic Beauty Revolution Summit which addresses Botox, breast implant illness, toxins in your cosmetics and so much more. In my interview we talked extensively about the low serotonin/low self-esteem connections which I feel is a big missing piece for helping women who feel the desire or need to use cosmetic Botox in order to feel good and love themselves.

Diane writes about Botox here: Is Botox Safe? Top 3 Concerns & What to do if you’ve had it, sharing a brief history of botox, what she has uncovered about toxicity issues and possible detox solutions.

She also created this list of 58 Botox Illness Symptoms which she gave me permission to share here. She compiled this list from 1000+ people who have had Botox injections.

58 botox illness symptoms

Because of Diane asking questions and this initial research I’ve done, I’m adding a question about past history of Botox injections to my client intake form and will be gathering more information from my community of anxious women to see if there are patterns as to why some folks have such bad reactions.

I do feel we need to be asking if Botox injections (cosmetic or non-cosmetic) are a possible root cause of anxiety and panic attacks because they are adding to the toxic burden in susceptible folks.

But I do acknowledge it’s challenging to unwind all the contributing factors because it depends on what is going on with each person, such as their gut health, other medications (benzodiazepines themselves can be problematic), past trauma, infections, poor adrenal health, low GABA, low serotonin, poor detox capacity, low bile production, genetics etc. Unfortunately there is no way to know in advance who will be harmed and if Botox is the tipping point.

Please comment below if you’ve had Botox injections and had adverse reactions or have benefited from them with no adverse reactions. And if you have not had Botox would you ever consider it? Feel free to post your questions too.

Essential tremor, dystonia, anxiety and cravings – diet, GABA, tryptophan, zinc and vitamin B6

By 72 Comments

Essential tremor, dystonia, anxiety and cravings

Today I’m sharing how diet, GABA, tryptophan, zinc, vitamin B6 and other B vitamins can resolve essential tremor and sugar cravings in 2 months, and also resolve musician’s dystonia and social anxiety within 4 months.

According to Medical News Today essential tremor is a movement disorder that can cause hand tremors and “is among the most common movement disorders.” … “The tremor usually affects both sides of the body, but it may be more noticeable in the dominant hand. It tends to occur when the person is moving as well as when standing still. Genetics may be responsible for around half of the cases of essential tremor.”

Essential tremor – diet, GABA, tryptophan and B vitamins

This Croatian paper, Treatment of Essential Tremor with Multi-Modal Nutritional Therapy in a Teenage Patient, reports the “case of a 13-year-old boy with [essential tremor] causing severe functional impairment” over the previous 2 years.

“A multi-modal nutritional therapy approach” was used to target three possible areas that could be contributing to the tremors: a poor diet that was high in sugar, low GABA levels and low serotonin. These changes were implemented:

(i) diet (specifically adopting a Mediterranean diet)

(ii) GABA (through oral supplementation) and

(iii) L-tryptophan/vitamin B pathways (Triptobel oral supplement).

The papers states: “After two months of therapy, his tremor decreased significantly and he regained normal function.”

Once the essential tremor resolved, this teen was able to resume his plans to pursue a musical career as a guitar player (which had been put on hold due to the tremor and his inability to play). What wonderful results!

I’m thrilled to see tryptophan and GABA being used for this condition and am really pleased to read this case report.  Here is my commentary on the supplements and doses he used for anyone wishing to try and replicate this nutritional approach (keeping in mind there is no one-size-fits-all).

  • He used 150 mg of the Triptobel supplement three times daily at 8 am, 1 pm, and 6 pm. One capsule of  the Triptobel contains 150mg L-tryptophan and a B vitamin complex of thiamine (vitamin B1), riboflavin (vitamin B2), niacin (vitamin B3), pantothenic acid (vitamin B5), vitamin B6, folic acid (vitamin B9), and cyanocobalamin (vitamin B12).  The total tryptophan dose was 450mg per day. A typical starting dose for someone with anxiety is 500mg 2 x day so his dose was on the low-end.  The Triptobel was also used at mealtimes and according to the label “on a full stomach after a light meal, preferably without protein.” I like to use tryptophan between meals (away from protein) and a B complex with meals so I’m intrigued by this application (but wonder when protein was consumed).
  • He also used 750mg GABA twice daily at 10 am and 4 pm. This is considered a high starting dose for the majority of my clients with anxiety and I start low and build up to this amount.

Anxiety and low mood was not mentioned so I don’t know if they were factors.

It appears sugar and carb cravings were very likely a factor given that his normal daily diet contained “large amounts of refined sugars (chocolate, cake, biscuits, ice cream, etc).” The amino acids would have helped him with those cravings.

With regards to his diet, given how common movement disorders are with gluten issues, I would also consider I gluten-free diet which has been shown to have an adverse impact on neurotransmitter levels and B vitamins. Could gluten have triggered these nutritional deficiencies and the tremors?

And now to share a very similar case in an adult male … with a different and yet related approach.

Dystonia and hand tremors – and the pyroluria connection

This same Medical News Today article also describes dystonic tremor/dystonia as a movement disorder that can also cause hand tremors, stating that “the brain sends incorrect messages, resulting in overactive muscles, abnormal postures, and sustained undesired movements. Young adults and those in middle age are most likely to develop dystonic tremors, which can occur in any muscle.”

If you’ve been reading my recent articles on pyroluria (the pyroluria-vagus nerve connection and the introversion-pyroluria-loneliness connection) I’m sure you’ll be be interested to learn that there appears to be a strong link between pyroluria and focal musician’s dystonia (or musician’s cramp) in some individuals.

As you read in the blog above, Jay, also a guitar player, had to put his professional music career on hold due to musician’s dystonia. He also happened to have social anxiety and he started to notice improvements in his anxiety and tremors within the first 2 weeks. At the end of 4 months of being on the pyroluria protocol, he shared this:

I think it is, at this point, safe to say that the pyroluria treatment [120mg vitamin B6 and  60mg zinc) is, at least in my case, the cure for pyroluria and dystonia. 90%+ of my symptoms have disappeared, I am working extensively on repertoire and I am thinking about getting back into performing.

He says his experience was “akin to rebirth as a musician and also as a person.” How wonderful is that to read. Jay’s musician’s dystonia resolved and so did his social anxiety.

The outcome for the teen and Jay were similar and yet the approaches used were seemingly very different. This isn’t actually the case since zinc and vitamin B6 are co-factors that are needed to make GABA and serotonin.

Do you experience tremors, or have you been diagnosed with essential tremor or dystonia (or know someone who has)? And have you considered a nutritional approach?

Do share if you’ve seen success with either of the above approaches, and also experienced reduced anxiety or felt more social?

Pyroluria prevalence and associated conditions

By 86 Comments

pyroluria-prevalence

Pyroluria is a genetic condition that is frequently associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. People with this problem experience varying degrees of anxiety or fear, often starting in childhood, but they usually manage to cover it up and push through. They tend to build their life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress.

Addressing low levels of the mineral zinc and vitamin B6, together with some other nutrients and stress management, are key to addressing these symptoms.

You can read more about pyroluria, sometimes called high mauve or pyrrole disorder here

Pyroluria is far more common that we realize and is not considered a real condition in conventional medicine or mainstream mental health.

I’d like to share the prevalence of pyroluria and the many related conditions/syndromes (other than those we have listed on the current Pyroluria Questionnaire from The Antianxiety Food Solution

I discussed some of this in my interview on the Anxiety Summit season 3: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results and in my Closing call 60+ Nutritional & Biochemical Causes of Anxiety and Recommended Supplements so here it is all in one place.

This is an excerpt from my book The Antianxiety Food Solution:

Joan Mathews-Larson is someone who I consider an expert on the subject of pyroluria. In her book Depression-Free Naturally, she reports the prevalence as follows: 11 percent of the healthy population, 40 percent of adults with psychiatric disorders, 25 percent of children with psychiatric disorders, 30 percent of people with schizophrenia, and 40 percent of alcoholics.

Abram Hoffer worked primarily with schizophrenic patients, but he found pyroluria was also present in 25 percent of his nonschizophrenic patients, including adults with anxiety, depression, and alcoholism, and children with learning disorders and behavioral disorders.

According to McGinnis, pyroluria is also present in about 46 percent of people with autism spectrum disorders and 71 percent of those with Down syndrome.

I work primarily with adult women who are anxious, depressed, or both and have found that at least 80 percent of my clients with moderate to severe anxiety have a large number of pyroluria symptoms.

I thought it would be useful to summarize the above percentages for some clarity. I used some educated guesses to get some ranges we may expect to see. Keep in mind that the differing percentages are because of the different populations each practitioner works with:

  • the healthy population : 11% (Joan Mathews Larson)
  • adults with psychiatric/mood disorders like anxiety and depression: 40% (Joan Mathews Larson)
  • children with psychiatric/mood disorders like anxiety and depression: 25% (Joan Mathews Larson)
  • children with learning disorders and behavioral disorders: 25% (Abram Hoffer)
  • schizophrenics: 30% (Joan Mathews Larson)
  • alcoholics: 25% (Woody McGinnis and Abram Hoffer) to 40% (Joan Mathews Larson)
  • autism spectrum disorders: 46% (Woody McGinnis)
  • Down Syndrome: 71% (Woody McGinnis)
  • adult women with anxiety and/or depression: up to 80% (Trudy Scott)

There are other related conditions where there have been reports of improvements in both conditions (when on the pyroluria protocol):

Other factors/conditions to consider:

  • Miscarriage – Carl Pfeiffer observed that pyroluria is more common in girls and that girls in the family often look alike. It seems that boy babies are more frequently miscarried
  • MTHFR defects – I have been hearing that many people with pyroluria also have one or both of the MTHFR polymorphisms. We know that methylation polymorphisms are a factor in miscarriages and it would be interesting to know if more boys are miscarried.
  • Low histamine (histapenia) or high histamine (histadela) – many pyrolurics also have one or the other. I’m not sure of the prevalence but I’m sure Dr. William Walsh has some numbers which I plan to find.
  • Chronic fatigue syndrome/CFS – the common issues with CFS and pyroluria seem to be low zinc and low iron, plus inflammation. You can read more here: Pyroluria and chronic fatigue syndrome: is there a link?
  • Low oxytocin and social anxiety and autism – the common factors seem to be oxytocin receptor gene (OXTR) defects, low serotonin and low zinc

Other conditions that have a social anxiety aspect, a possible neurotransmitter imbalance with a likely pyroluria connection. These came up as questions during season 3 of the Anxiety Summit and I’ll report back as I find out more:

  • Alice in Wonderland Syndrome. I don’t know if there is there a connection between pyroluria and Alice in Wonderland Syndrome (where the person sees large or small objects/people and often has migraines). I had never heard of this condition but my quick search had me wondering about the word “hallucinations.” The original work by Carl Pfeiffer was with schizophrenics who had pyroluria so it’s possible that there is a connection.
  • Selective mutism I also don’t know if there is a connection between pyroluria and selective mutism. We do know that selective mutism often goes hand in hand with anxiety and social anxiety.

Both young girls with the above conditions did score high on the pyroluria questionnaire and it will be wonderful to hear if the pyroluria protocol helps them. I really do hope so!

I will be doing more digging to find the connections between pyroluria and Lyme disease, leaky gut and oxalate issues. I also plan to take a deeper dive into the joint problems we see in pyrolurics so stay tuned for future blogs on these topics.

If you’re aware of any other conditions related to pyroluria or if have pyroluria and have seen other health conditions improve, please do share in the comments.

The Anxiety Summit – Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results

By 101 Comments

 

Trudy Scott, Food Mood Expert and Nutritionist, author of The Antianxiety Food Solution. presents during the Anxiety Summit Season 3.

Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results

  • Pyroluria and the effects of leaky gut, oxalates and low oxytocin levels
  • CFS, ADHD, autism, alcoholism, Lyme disease: the pyroluria connection
  • Introversion and musician’s dystonia: an update on the pyroluria connection
  • Troubleshooting the pyroluria protocol and mistakes I see
  • Testing for pyroluria, zinc, vitamin B6 and fatty acids
  • The 8 factors that make the targeted individual amino acids more effective
  • What to do when the amino acids are not working
  • Concerns about quinolinic acid and tryptophan?

Pyroluria/social anxiety/introversion protocol: trouble-shooting

This is the blog I mentioned that summarizes a number of prior blog posts on the topic: Pyroluria, social anxiety, introversion: a summary

We discussed factors to consider when you are not getting results on the pyroluria protocol. Here is the blog with the 21 we talked about during the interview plus additional factors that I’ve added.

Pyroluria protocol: why aren’t I getting results – trouble-shooting checklist

Here are the oxytocin blogs that discuss social anxiety, testing, the oxytocin receptor gene and connections to autism and depression:

Oxytocin, social anxiety, pyroluria and autism

Dr. Woeller shares how helpful oxytocin is for social anxiety, facial recognition and voice recognition in individuals with autism and Asperger’s syndrome

Oxytocin and social anxiety, pyroluria and depression?

Genetic variation in the oxytocin receptor gene (OXTR) has been implicated in anxiety, depression and related stress phenotypes

I mentioned my aminos and pyroluria interview with Sean Croxton on the upcoming Depression Sessions (an online video series) in June. He is an introvert and is fascinated with pyroluria-introversion connection. I said I’d share a link to the Depression Sessions but the site isn’t quite ready so please stay tuned. I’ll share it in a few days. This one is not to be missed.

 

Targeted individual amino acid supplements for anxiety: trouble-shooting

This is the blog I mentioned that summarizes a number of prior blog posts on the topic: Anxiety and targeted individual amino acid supplements: a summary

Here are the categories I discussed, together with the associated amino acid/s

  • low blood sugar: glutamine
  • low GABA: GABA (I prefer GABA to Phenibut or pharmaGABA)
  • low serotonin: tryptophan or 5-HTP
  • low endorphins: DPA (d-phenylalanine)
  • low catecholamines: tyrosine

Here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution. I encourage you to do and see which sections may be an issue for you (or see how much you’ve improved if you’ve been using amino acids)

I discussed why Urinary neurotransmitter testing falls short and why I use the above questionnaire instead

There are some precautions to be aware of when taking supplemental amino acids. Here are the Amino Acid Precautions

The 8 factors that make the amino acids more effective:

  1. addressing blood sugar issues and eating real whole food
  2. the brand and quality
  3. timing i.e. between meals and away from protein
  4. your unique amount for your own need
  5. addressing bipolar or bipolar-type symptoms
  6. using the pyroluria protocol at the same time (if needed)
  7. addressing thyroid health and hormonal health
  8. taking the amino acids opened up

Thanks to Dr. Josh Friedman, Integrative Psychotherapist, for the interview. As I mentioned, I interviewed him on season 1 of the Anxiety summit on: “Integrative Psychotherapy: My Journey from Psychoanalysis to Whole Person Mental Health.” If you missed it, I highly recommend it. Dr. Friedman is dear friend, colleague and integrative psychotherapist who uses amino acids and other nutritional approaches in his practice. During our season 1 interview I asked him if he uses GABA with his patients and I love his answer:

it is definitely something I use. I am not a biochemist, so I actually don’t really know whether it crosses the blood/brain barrier, nor do I care actually. the first question should be, is it harmful? Are any of these things going to cause harm? And the answer with all the amino acids are no, they’re not going to cause harm, especially when compared to psychiatric medicines. The second question is, does it work? Is it helpful for our patients that we see in our practice?

Here is a link to my book: The Antianxiety Food Solution: How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings

As we mentioned, it has the amino acid questionnaire, pyroluria questionnaire and all the protocols BUT does not contain the 21+ pyroluria touble-shooting checklist (see the separate blog post for this)

trudy scott the antianxiety food solution

If you are not already registered for the Anxiety Summit you can get live access to the speakers of the day here: www.theAnxietySummit.com

Missed this interview or can’t listen live? Or want this and the other great interviews for your learning library? Purchase the MP3s or MP3s + transcripts and listen when it suits you.

You can find your purchasing options here: Anxiety Summit Season 1, Anxiety Summit Season 2, and Anxiety Summit Season 3.

Pyroluria and focal musician’s dystonia or musician’s cramp

By 38 Comments

Pyroluria and focal musician’s dystonia

In May 2014 a gentleman named Jay asked this question on my Pyroluria Questionnaire blog: “have you come across a connection between pyroluria and focal musician’s dystonia (musician’s cramp)?

I responded saying “I have not and until I looked it up I was not aware of this condition. I’m curious why you’re asking? Do you or someone you know have symptoms of pyroluria and focal musician’s dystonia?”

I’m a very curious person and always turn to the research and like to look for connections. I started to dig and came across the The Dystonia Society, a UK based organization that provides support, advocacy and information for anyone affected by the neurological movement condition known as dystonia. They have this definition on the About Dystonia page:

Dystonia is a neurological movement disorder. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures.

The various types of dystonia are listed and they discuss managing symptoms and say:

Remission from symptoms does sometimes occur but is rare – occurring in around 5-10% of cases.

I posted some feedback, starting a dialogue (both in the comments and via email) that led to me learning a whole lot more about dystonia and the finding out there does seem to be a connection to pyroluria, a social anxiety condition that is not well-recognized in the medical or mental health community. Symptoms include inner tension and discomfort in big groups. Many introverts relate to the symptoms of pyroluria too.

In the process Jay saw wonderful results, we heard from Dave and his success. And we’re getting to share this information in the hope of helping others like him and Dave.

Much of the information is buried in comments on various blogs so I’ve decided it needs a separate blog post – with the connections and research I discovered and some of the inspiring feedback from Jay and Dave.

This is most of what I originally posted (with a few slight revisions).

I do see some overlaps with dystonia and mood so it’s possible there is a connection between pyroluria and musician’s dystonia:

(1) The Dystonia Society is a wealth of information and has this on their mental health page: “it is now thought that people affected by dystonia are more likely to experience mental health conditions such as depression, anxiety and OCD even before the physical symptoms of dystonia appear. It is not known why this is – but it appears that whatever causes dystonia may also affect mood and behaviour in some way.”  Now I wonder how common social anxiety is for those with dystonia?

(2) “An additional relation between dystonia and mental health conditions is that some drugs used to treat psychoses can cause tardive dystonia / dyskinesia. With the new generation of these drugs (called dopamine receptor blockers) this is much less likely than it used to be – but unfortunately a small risk remains.” (this is also from the above dystonia page)

(3) The drug treatments they recommend are also often used for anxiety and depression. I’d suggest assessing for low GABA, low serotonin and low catecholamines first (using the amino acid questionnaire and determining if targeted individual amino acids may give the same relief. I would avoid benzodiazapines – Dr. Catherine Pittman shared the many side-effects and withdrawal effects during the Anxiety Summit.

(4) If you have pyroluria, you’ll also have low levels of zinc and vitamin B6, key co-factors in making serotonin and GABA and other neurotransmitters which affect anxiety and depression.

(5) Depression, anxiety, pyroluria and dystonia have a possible autoimmune/gluten/diet connection. This paper “Movement disorders in autoimmune diseases” discusses how “Tremors, dystonia, chorea, ballism, myoclonus, parkinsonism, and ataxia may be the initial and even the only presentation of these autoimmune diseases.” And here is a case study where the dystonia resolved on a gluten-free diet: “She had complete resolution of her neurological symptoms with introduction of a gluten-free diet.” We know gluten can damage the gut and lead to low levels of nutrients such as zinc and also cause low serotonin.

(6) Wilson’s disease (a serious condition of high copper/low zinc) can have symptoms of dystonia. This 2012 paper states: “The clinical manifestations of neurologic Wilson’s disease include variable combinations of dysarthria, dystonia, tremor, parkinsonism, ataxia, and choreoathetosis.”

I’m so pleased Jay asked this question. I learned a lot by looking in to this initially and since then have learned a great deal more.

And take a look at the fabulous results Jay and Dave saw when they implemented only the pyroluria protocol (the starting dose I use with clients is 100mg vitamin B6 and 30mg zinc and 1300mg Evening Primrose Oil):

From Jay in June 2014

I started taking B6 (Pyridoxine Hydrochloride) 120mg and Zinc USP 60mg 2 weeks ago and do find some relief already. As you may have guessed, I have had dystonia for a long time and had to put a professional musician’s career on hold, and when I read your site, I found that I have a large number of symptoms from your list – I am hopeful.

From Jay in September 2014

I think it is, at this point, safe to say that the pyroluria treatment is, at least in my case, the cure for pyroluria and dystonia. 90%+ of my symptoms have disappeared, I am working extensively on repertoire and I am thinking about getting back into performing.

Dave in September 2014

just writing here to say that i too have battled focal dystonia over the past 8+ years.  actually started as writer’s cramp and then worked it’s way into my guitar playing.  about  3 years ago i noticed symptoms lessened based on different things i ate and shortly after came across pyroluria.  in all questionairs i answer yes to most if not all questions.  

anyway,  for the past 2 years i’ve been on zinc and b6 and have had vast improvements.  for me, the muscle disorders don’t go away without retraining, but the b6 and especially zinc make retraining much more successful.   however, sometimes i do hit the jackpot and my hands work almost normal without the efforts of retraining.  my dose fluctuates between 25-60 mg zinc and 50-100 mg b6 which i seem to have more trouble taking.  i also experimented with methyl b12 but that led to a very painful rash.

the funny thing about all of this is that i feel nowadays that focal dystonia was only the canary in the coal mine for other symptoms that paid little or no attention to because i was only focused on being a musician.  as a result of taking supplements most of those other symptoms are much better and i’m soooooo close now to having proper movement in my fingers.

it’s really great to see what you and jay have posted here because it really validates what i’ve been doing.  i too believe there are many that can be helped by this.

Jay in October 2014

I am so happy to read this dystonia related success story! After my own experience, I still say an experience akin to rebirth as a musician and also as a person, this was the reason for me to post on this blog – to help get this out to musicians who are victims of dystonia and inadequate medical treatment.

We’re hoping we can generate some interest from various dystonia organizations/groups/forums and help more musicians find symptom resolution – certainly more than the 5-10% the Dystonia Society reports. The more people reporting success, the more likely approaches like this will be studied, accepted by the mainstream medical community and included on sites like the Dystonia Society.

If you relate to any of this please do comment and let us know what your results have been.

If you know someone with musician’s dystonia (or another form of dystonia) and pyroluria/social anxiety please do share this with them.