Victoria Moghaddami joined Local on 2 to share her journey from getting diagnosed with POTS Syndrome to living her best life as she manages the condition.
Right?!! Lately, I have wondering what diet I need to try or retry. "Maybe I didn't do it right..." I am just gonna keep relying on Christ, writing, and try to stay sane....and spend 95% of my time in bed. My cardiologist says I have worst case he's ever seen. Not exactly something you want to win a contest for...
You’re not alone… my life has changed drastically since being chronic and finally diagnosed; I also break record for allergy Dr. basically allergic to life. I live off Kate Farms Shakes, baby food and small snacks and selective items I can have every day and mainly have to do everything from a wheelchair cuz of p.o.t.s. I try and focus on things I can do rather than all the things I can’t and live life from my computer doing school online, attending community and events through Zoom and ways to stay connected. I do little rowing machine I can at home to maintain strength and not decondition worse and very strict schedule and trying to manage but still struggle rollar coaster every day. I do believe people can recover or get better however looks different for everyone and severity’s like said and different phases and still have to manage. Just take it day by day. I believe I had symptoms all my life… and after accident and trauma and surgery’s just got more chronic that I couldn’t go on pushing through anymore. Took years to get an answer of what was happening with drs saying it’s aniexty or in head when literally I couldn’t walk anymore or daily functioning. Was relieved to finally have some answers but still a coaster. I try to help bring awareness and let others know they not alone and there are still caring people. Keep moving forward
I came here to say this. I watched this entire interview because the title said “thriving with POTS”, and all we got out of it was “meditation, a gallon of water a day, clean eating, and celery juice”. *facepalm*.
Most miserable condition. There needs to be more doctors that can test and treat POTS. You have to figure it out on your own and advocate for yourself. And then find a POTS specialist and there are very few.
I've most likely had dysautonomia/POTs since I was in my teens; however it wasn't diagnosed until a month ago at the age of 37 (there's also a suspicion of ehlers danlos). Growing up I was a relatively normal kid though i was different than my peers in my thought process and how i perceived things(we now know im AuDHD). In my teens I started passing out upon standing/when my dad would give me a hug before work/school in the mornings. I also ended up with what they called a "sock/glove" rash and a "mo no like" virus. I also wasn't moving my bowels but maybe once per wk. I ended up in the ER (still teens) with. HR of 40, gray/blue with temp of 93 and enlarged liver... I got sent home only to be admitted 3 days later for 2 weeks of every test possible. Still no answers other than they felt I had an eating disorder and needed to get over myself (mind you I ate a normal caloric intake for a teen I just didn't care for junk or fast food , I preferred whole and minimally processed foods-- odd for a teen , possibly but does not equate to an eating disorder last I checked). ... I eventually gained weight back and seemed to get better. Went on about life. Coded in my 20s and started having a bunch of different sx- still no dx...I was told I was perfectly healthy and just had an "athletic heart". (I was also a functioning alcoholic for 10yrs which certainly didn't help things...that's whole other can of worms). I wrecked in 2017 sustaining a TBI and possibly having a TIA and it's pretty much been downhill since then. It has taken my husband and I the last 4.5 yrs to finally be blessed with a doctor that dx POTS/dysautonomia (and CPTSD + a suspicion of EDS... all of which explain nearly all of my sx over the years). It only took 20+ yrs but we are so thankful for Dr.Gharbo with VCU.
My daughter had pots and went to a functional neurologist to get help. They work to retrain the brain and they work on the gut because the are connected. She is doing so much better after being bed ridden and unable to function at all. Pots does affect many things in the boy because it has to do with the autonomic nervous system.
If you notice she said that her symptoms came on after she had a bad car accident. Someone should get her to look into the relationship between pots and upper cervical instability. I have upper cervical instability and once it came on that's when my pots symptoms appeared. I've fixed it once with total cervical PRP injections but then had a bad fall too soon to the procedure being done and it brought the pots symptoms back on.
Sorry to say, but she does not know what's coming. She's thriving on the adrenaline that her body needs to function and it's a huge boost. I've had this for decades and excelled at everything until 35. Now at 50 I'm at the point of vomiting upon standing, not being able to eat carbs or even drink enough (it triggers vomiting) and even having proper neurological dysfunction related to the condition.
Me too 49 this month Pretty much tanked last year Can play drums still barely Can't walk Can't stand Can't sit still Passing out for 3 seconds. I'm so tired
@@lisamccullough5150 No, no. Absolutely not. For some people POTS can be a transient thing (I think it's about 20%) that was just caused by an autoimmune response or loss of blood volume and disappears as the body recuperates from a surgery, accident, child birth etc. For those of us who live with the permanent dysfuntion (dysautonomia), it's a different thing. And there is a subset of those who have the hyperadrenic type (i.e. abundance of stress hormones) that tend to be the progressive kind. That is, POTS is a syndrome that is not a disease, but a condition that can be caused by multiple reasons.
If she did recover, she was lucky (and is just not going through a good period). A relatively small percentage do recover, because the onset is brought on by outside circumstances (like a car accident in her case) and the body is able to heal itself with time.
I have POTS per tilt test, I have severe small fiber Polyneuropathy, and seronegative rheumatoid arthritis and lupus. It’s hard the sweating profusely, it’s tough on the heart
I’m grateful I got suddenly sick just 3 months ago and got diagnosed just one month after. Doctors were shocked at how quickly it came on and they said it wasn’t normal for my age. I’m 31.
POTS can be triggered by anything that triggers the stress system, be it viral, accidents, surgery, blood loss etc. The hypothesis is that it is partly genetic.
POTS is co-morbid with many diseases, but POTS is a different thing and is easily diagnosed by the tilt-table test. However, it is a chicken and egg question what causes what. Makes little difference I suspect in the end, because everything related to physiological stress is a dysfunctional or healing feed-back loop.
I have been diagnosed with POTS/Autonomic Dysfunction by tilt table test. I also have Parkinson’s. Is there anyone else with both out there? And if so how is your Dr. treating it? I am 62 and was diagnosed in 2017.
Anyone with POTS needs to consider the possibility that they have a *functional" B12 deficiency (if not just a standard B12 deficiency.) High dose daily B12 injections of methylcobalamin cured my POTS. I'm now trying to get to the root cause of my deficiency (is seems partially genetic, partially autoimmune...maybe even part intestinal parasite...I'm leaving no stone unturned. Living with dysautonomia stinks.)
I know what you mean. I went through that thought process, but I've got excess B12 and B9 combined with hyperadrenic POTS. The likely cause is dysbiosis, which in itself can be brought on by stress hormones related to POTS (dyspepsia , constipation or IBS etc.) Autoimmunity certainly plays a part. The only fundamental things that I've discovered (as a student of other people's research) after two decades into this is that iron stores (ferritin) and D-vitamin are probably implicated. Why and how is unclear.
POTS is an adverse effect of so many pharmaceutical drugs (especially psychiatric drugs) and very common when withdrawing from these psychiatric drugs. Often overlooked as a potential cause.
