What Caused Your Pots/autonomic Issues - Poll

[andybonse]

Hi All,

Please can you take the time to fill out this poll,

I am doing some research projects to get an idea of causes and probabilities.

Thanks

Andy

[Christy_D]

I can't fill out the poll. My son's was caused by MCAS. It wasn't an option, perhaps add 'Other'

[JenniferInOhio]

After mono when I was 18. My heart raced all the time but I just thought I was out of shape. Was undiagnosed until age 35

[corina]

I've had problems all my life but the dys was def set off by surgery and got worse over the years

[Freaked]

I've had certain symptoms always such as hyperhidrosis and jaw/chest/neck pain when I run, but my proper POTS came on very suddenly as I started to come down with a bad flu. Docs said my crazy heartrate was just viral, and it did improve after the flu was gone, but it didn't recover completely and I had to walk everywhere at the speed of ninety year-old. Eventually it became difficult to even walk around the house.

[trappedat20]

My neck curve is all screwed up. Basically instead of curving in like it's suppose to, it started to straighten all of the way, and then started curving in the opposite direction. So now my spine is crushing my medulla oblongata/ brain stem (the part of the brain responsible for autonomic functions) and because there is so much pressure on it it's not able to function right. It could be worse though because if it were damaged and not functioning at all I would either be dead or a vegetable. I also have pinched nerves in my neck, but they said a big part of the dysautonomia for me was all of the pressure that is being put on my medulla.

[millyaulait]

It was a sudden virus for me. I was told I would get better after 18 months. Nope. Three years later and I'm as sick as ever.

[Becia]

OSU declared my dysautonmia may have always been there for the past few years, but after my second heart ablation for bad pvcs, that's started my downward spiral.

[Krissy21]

I had mono when I was 16 which is when my symptoms started. However, they progressed very slowly over time instead of happening suddenly like typical post-viral pots. I was officially diagnosed at age 20 by my EP and he referred me to a pots specialist. My symptoms continued to get worse until about nine months ago when I was finally able or see the specialist and get on a treatment plan that has really helped. Now at age 22, I'm feeling much better. Definitely not 100% but I am improving.

[badhbt]

I think that I had POTS since I was a teenager. I remember in nursing school when we were studying the heart I noticed that my heart rate increased when I stood up. I didn't have any other symptoms at that time. I think through my twenties I would get illnesses, which were times that I felt sick but I didn't have any sick symptoms. I just felt off and out of it. Then in my 30's after an illness I had my first official flare that lasted about 4 months. I was not diagnosed at that time, but I am positive it was POTS. Then in my 40's I had another flare after a rigorous diet and exercise program. I was eating very low fat, and working out sometimes twice a day.....then bam. This flare has lasted over a year.

[utah1991]

I've had about ten episodes of syncope since I was about ten years old. The episodes would be intense but would always pass and I would feel better the nest day. Back in August, I was taking well butrin, I wasn't sleeping and I was long distance running and doing cross fit. I had dropped a lot of weight and was really pushing my body and not eating right....I had another episode and I began my dance with POTS. I have been improving with acupuncture and chiropratctic but last night after feeling good for two months...out of the blue...another episode :/

[fkrizanek]

Pots started after I started blood pressure control medicine. The doctor says drink more water! Sure, drinking 4 liters a day, still does not help.

[madsmom]

Daughter was 10 yrs old at dx for pots. She was dx following a sudden onset of pneumonia; very odd for an extremely healthy and highly athletic young girl. 6 months of acute symptoms. Fast dx, > 3 months from onset.

[NaomiSpellman]

I have had symptoms my entire life, though always shifting. More and more co-occurring symptoms. One of my parents has similar diagnoses but not as pervasive/disabling. And this same parent;s siblings: many autoimmune diagnosis (Edamatosis, FM, connective tissue disorder).

[TCP]

1984 ME after EBV. By 1993 I was using a wheelchair. Made lots of progress and working towards recovery and then BAM! by 2007 Autonomic and Peripheral Neuropathy kicked off big time after years of vague symptoms appearing. POTS etc were part and parcel of it all.

I have now been dx'd with EDS! That all ties in now with ME, POTS and neuropathy.

[btru2all]

I’m glad that you are doing this poll. I have an autoimmune disease (Sjogrens Syndrome) which has been attacking my CNS for18 years. I am in a wheel chair. I had Thyroid Surgery, and in post op it all started. I had systolic BP up to 228 (hypertension) and as low as 48 (again systolic,hypotension) My doctors acted like this was the strangest thing they had ever seen. I was a sred as a lobster for days. I am an R.N. and want to explain the highs and lows of my blood pressure at the time. Lasted 2 years which I miraculously “cured” by using a Light Beam Generator machine at my Naturopaths office. I couldn’t believe it. It was gone for years. It came back the minute I started the Fentanyl patch. I have moved far away from that doctor. Unfortunately I cannot stop using pain patch. My pain/spasms are too bad. Now My Hyper/hypo tension episodes are not as severe. They are frequent/significant/problematic. Now though it is coupled with the torturous heat/cold irregulation. I have more problem with the extreme heat, and mostly at night. I cannot wear any covering on my body, and sleep on icepacks! It is ****. Yes, I do have peripheral neuropathy. I do believe that my digestive system is also effected. apologize for the length of this. Thank you for listening.

[rubytuesday]

Mine started suddenly (I can remember when) and was gradually progressive. I put 'combo' of causes as I have EDS, chairi I, CVID, orthostatic hypotension, and we can have false negatives on autoimmune tests, and once on gamma globulin we can have false positives and false negatives).

[xRobin]

Mine developed after years of ME/CFS. Otherstatic intolerance and other autonomic nervous system problems are common in ME/CFS such as insomnia, bowel issues, POTS, orthostatic hypotension.

[TCP]

Xrobin, I'm with you on that!

[Hope]

Symptoms started as a teen after Mono. I had another bad virus as a teen and was in bed for 3 weeks again, I'm sure that didn't help. I was left with Chronic fatigue from the Mono on, and on and off symptoms of POTS, but wasn't diagnosed until I was 45 after a miscarriage left me bedridden for months. Now 2 years later I still struggle to function.

[Lethargic Smiles]

I said "other" for onset because the onset was slow through my entire life, then sped up by mono.

[BSmith85]

No idea?? Had my first symptoms at 17 while at a basketball game & pretty much self diagnosed myself 10 years later.

[bunny]

POTS was secondary to anorexia nervosa for me. Managed to cure the anorexia, but the POTS symptoms remained. In short, getting down to a BMI of 11 wrecked my body's organs and regulatory systems and they've never fully recovered.

[Nymph]

I am somewhat hypermobile. I have had temperature dysregulation since puberty. At age 21, developed hypoglycemic and GI symptoms. Dizziness/tachy/brainfog did not start until age 31, after I had developed Sjogren's. I'm guessing I had some dysregulation caused by the hypermobility which was then made worse by Sjogren's to become POTS.

[Bigskyfam]

Agreed with you all. I had a flare at age 35... Flurries of symptoms since puberty that never amounted to testing or diagnosis.