A-Z Symptom Helper

Click on a symptom below to see what practices/supplements/drugs helped relieve that symptom for fellow sufferers. This list was created via the input of members in our Facebook support group.

Please note that none of this is medical advice. Work with your own trusted healthcare provider before beginning or discontinuing any supplements or medications.

**What works for one person, can cause a worsening of symptoms for others, so please use your common sense, do your own research, consult with a trusted medical professional, and remember that every drug/supplement comes with its own list of benefits and risks.**

Please don't hestiate to comment below if you'd like to add something to the list that helped you.

What helped with symptoms overall for most

• Time

• Healthy, organic foods - consider a high protein, low sugar diet

• Sleep

• Electrolytes

• Family/friends support

• Celery juice

Anxiety

Back pain

Brain fog

Constipation

Dry eyes

Dry mouth

Dry nose

Gut healing

Hair Loss

Insomnia

MCAS

Memory loss

Migraines

Muscle spasms

Muscle weakness/joint pain

Nausea

Nerve pain

POTS

Swallowing difficulties

UTIs

Vision impairments

Anxiety

• Ashwaganda (OTC)

• EMDR therapy

• Vagus nerve exercises

• Sound healing

• Distraction

• Avoiding caffeine

• Progesterone cream (Rx)

• LDN

• Benzodiazepines are sometimes used as a last resort; if you choose to take them please work with a trusted healthcare provider and inform yourself of the risks that come with these drugs

  
  

Back pain

• Icy/hot packs

Brain fog

• Huperzine A (OTC)

• Omega 3's (cod liver oil)

• Creatine

• Ginsing

• Nicotine patches (7 mg) have helped some; for others it made them more anxious

Constipation

• Glycerin suppositories

• Slippery Elm

• Senna/Smooth move" tea (note: may cause stomach pain)

Dry eyes

• carbomethylcellulose preservative free .05% (Rx)

• eye drops

• Cod liver oil

Dry mouth

• Biotene products (spray, lozenges, mouthwash)

• Chewing gum

• Peppermint drops

• Xylimelts

Dry nose

• Saline spray

Gut healing

• Avoid processed foods, seed oils & added sugar whenever possible

• Stick to simple, organic whole foods diet. It's important to eat organic grains (wheat, corn, soy, etc) whenever possible, as conventional grains contain high amounts of gut-disrupting herbicides and pesticides

• Incorporate meat/fish broth, and bone broth if you're not suffering from MCAS (Bone broth is high in histamine, so please avoid if you have MCAS)

• Low histamine probiotic if you have MCAS

• Sauerkraut for those who do not have MCAS

• Marine collagen

• Digestive enzymes (may not be suitable for those with MCAS)

• Xymogen GI balance

Hair loss

• Gently washing hair with fragrance-free shampoo every 3-4 days

• Don't comb your hair when wet

• Collagen supplements

• Most sufferers find that traditional hair regrowth systems like Nutrifol do nothing for botulism-induced hair loss. Time is the best healer, and many report that it takes 2-3 years for their hair to thicken back up

Insomnia

• L-theanine

• Valerian root

• GABA supplements

• Magnesium glycinate - note that magnesium is a muscle relaxer, so if you are experiencing muscle weakness it would not be recommended

• "Best Rest" by Pure Encapsulations

• Benzodiazepines (should be a last resort and weaned off ASAP)

• LDN

• Meditation podcasts

MCAS

• Claritin, Allegra, or Zyrtec

• Pepcid (famotidine)

• Cromolyn sodium

• Ketotifen (Rx)

• DAO supplements

• Vitamin C

• Low histamine probiotic

• SAAT

• AAT

• See our page on Botulism and MCAS

Memory loss

• Nicotine patches (7mg) have helped some; for others it made them more anxious

• SLEEP!

• Write everything important down, on post its or in your phone

• Use your phone to set reminders and alarms

• Ask others to give you reminders about things you're forgetting

• Repetition: repetition is key to making new memories. Repeat new information that you want to retain every few minutes for an hour or two

Migraines/head pressure

• Acetaminophen

• Gabapentin

Muscle spasms

• Magnesium (orally) - note that magnesium is a muscle relaxer, so if you are experiencing muscle weakness it would not be recommended

  
  

Muscle weakness/pain and joint paint

• Physical therapy

• TENS unit

• Red light therapy (after initial 6 months)

• Magnesium (transdermal, such as lotions or bath soaks)

• Magnesium glycinate (oral)

• Biofreeze

• Arnica lotion/cream

• Citicholine (pure)

Nausea

• Zofran (Rx)

• Phenergan (Rx)

Neck weakness/pain

• Neck pillow

• Icy hot packs and cream

Nerve pain

• TENS unit

• Magnesium (oral and transdermal)

• Lion's mane mushrooms

• St. John's Wort

• PEA supplements

• Red light therapy

• Cannibinoids

• Some found that prescription medications, like Amitriptyline, Gabapentin, and Oxycodone were the only things that helped

POTS

• Electrolytes

• Electrolytes MCAS friendly

• Compression wear

• Support organization for POTS: Standing Up to POTS

  
  

Swallowing difficulties

• Pureeing food, smoothies, soups, & shakes

• Baby food

• Using a lot of sauce/gravy with solid foods

• Ramen noodle soup

UTIs and interstitial cystitis

• Focus on gut health (see above)

• Water and electrolytes

• D-mannose

• Vitamin C

• When pain persists: How to know if it's a UTI or interstitial cystitis

  
  

Vision impairments

• Thorough evaluation performed by neuropthalmologist

• Eye exercises on Youtube