Hypothyroid & Postural Tachycardia Syndrome

I'm saddened and frightened to read these responses. My daughter was just diagnosed with Vasovagal Syncope, she is 11. She also has Hashimotos and Celiac autoimmune diseases. What is the difference between VVS and POTS? I'm so confused and lost.

Hi Donna, I see that another year has passed since you replied to Marcelle. But, my daughter has Dysautonomia (POTS) and suffers from daily headaches and dizziness that is exasterbated by increase in heartrate and/or adrenaline. She misses school and had been forced to give up the sports that she loves. My husband and I have looked into the chronic pain treatment program at the Mayo Clinic and we are also interested in learning more about CBD oil. Was the CBD oil that your daughter is using prescribed by a doctor? Where do you purchase it or is it something that you get from a pharmacy? We want to make sure we are getting the correct kind of cbd for her conditions. There are many, many questions. Thank you for any help you can give.

Hi @jilldawnhahn37, welcome to Connect. I am sorry you are having trouble finding something that will help with your daughter's Dysautonomia (POTS). Hopefully other members will join the discussion along with @donnaburch and be able to share something that has helped. I'm tagging @kariulrich @neeci and @kfletch to bring them into this discussion. I know that Kari is no stranger to long searches for proper diagnosis and managing multiple conditions.
I'm also tagging @ethanmcconkey our moderator to see if your post might have more visibility if it were moved to the following discussion:

Groups > Autoimmune Diseases > Diagnosed with dysautonomia in 2011. Looking for treatment options.
-- https://connect.mayoclinic.org/discussion/in-2011-i-was-diagnosed-with-dysautonomia-it-is-not-pots-but/

While we wait for others to join the conversation, you might like to read this story on Sharing Mayo Clinic:
Learning to Live Well with POTS Brightens Daily Life for Christine Esposito: https://sharing.mayoclinic.org/2016/12/15/learning-to-live-well-with-pots-brightens-daily-life-for-christine-esposito/

Also, here is a site to learn the specifics for Medical Canabis:
-- https://healer.com/

@jilldawnhahn37 have you found any treatment that helps your daughter?

John

@donnaburch ,
Have you looked into a condition called Beriberi? Many POTS patients (like myself) are misdiagnosed with POTS where they really have a condition called Beriberi. All that is needed in that case is B1 (thiamine) supplements (or injections in my case).. This is especially common among those patients who also have some kind of IBS which does not allow their digestion track to absorb B1 from food.
I recommend googling the word POTS and Beriberi together.

My daughter is 15 and have suffered from migraines since she was four. We just saw a pediatric neurologist today through Children's Hospital in Milwaukee, WI. She had been having stomach issues for over a year then since just this past July passed out at work then again twice at school two months ago. Dr notices changes in her blood pressure and heart beat when doing the blood pressure so we were first referred to a cardioligist tne neuro. When the dr sat down with us today it was a shock to hear that she had had every sympthom but one on the list for this. We have to go down to Milwaukee for further testing. This poor girl has been through so much and is so scared. Any advice for me has a mom and what do we expect when going for testing?

Hello @peyt1, welcome to Connect and thank you for posting what helps you with POTS and offering some suggestions. We all learn when members can share their symptoms and what has helped them. Thanks again for posting.

Hello @tdewall, welcome to Connect. I can't imagine how hard it is to go through the waiting for further testing to get to the bottom of your daughters health problem and having to deal with the anxiety. Thank you for being a strong advocate for your daughter. It might be helpful to write down a list of questions you have for the doctors before the tests. I think the more you can learn about your daughters condition, the more you can work with her doctors for a better treatment plan.

Did you see this story in an earlier post?
While we wait for others to join the conversation, you might like to read this story on Sharing Mayo Clinic:
Learning to Live Well with POTS Brightens Daily Life for Christine Esposito: https://sharing.mayoclinic.org/2016/12/15/learning-to-live-well-with-pots-brightens-daily-life-for-christine-esposito/

Are you able to share what your daughter's biggest concern is? Maybe others can offer some suggestions to help.

Hello,
My daughter was diagnosed with POTS and a year later with hypothyroidism. I am a nurse.
I would like to ask if anyone has experience with Dr Deborah Zelinsky at The Mind Eye Institute (Chicago) and using neuro-retinal imagine and glasses for POTS/dysautonomia? Some studies report complete remission of symptoms.
Best to all who suffer these challenging issues.
Marina

Hello @marinasinyard, Welcome to Mayo Clinic Connect. While we wait for responses from other members to see if they have any experience with Dr. Deborah Zelinsky and The Mind Eye Institute in Chicago, there is a discussion on neuroplasticity that some members have discussed their experience with eye conditions.

- Strabismus and Neuroplasticity: https://connect.mayoclinic.org/discussion/strabismus-and-neuroplasticity/

I did find some interesting YouTube videos of Dr. Zelinsky that you might find helpful.

- Dr Deborah Zelinsky Roundtable Discussion at SBMT 2018: https://www.youtube.com/watch?v=jLZ0ALzczRc
- Sound Hurt; Light Hurt; Then She Found Mind-Eye Institute: https://www.youtube.com/watch?v=gn91-U3EmpM
- Concussion, Brain Injury, Autism and ADHD: https://www.youtube.com/watch?v=AwpeJtCwiN4

@avmcbellar may also have some thoughts on the topic to share with you. Is your daughter considering The Mind Eye Institute to see if they can help?

The physician that coined the term POTS, I believe, is at Mayo Clinic in Rochester.