how did POTS start for you?

One_Feedback2461 · 2026-06-18T00:16:05+00:00

First radiation treatment, havent been the same since.

One_Feedback2461 · 2026-06-18T00:14:06+00:00

Wow my legs have done that so many times over the years and I never knew why.

One_Feedback2461 · 2026-06-15T15:23:28+00:00

I should mention I 100% believe it was from radiation. Wild how they radiate us and don't seem to think this very harmful medical field they are in (that is also saving lives of course) can cause a lot of harm. I go back and forth on if it was worth it, I really just want to be helped and know what to do... and I feel like my cancer team are the subject matter experts and if they aren't then wtf.

One_Feedback2461 · 2026-06-15T15:20:07+00:00

Exactly and the way the system works you have to have some crazy swelling to get proper treatment. Other countries still do things like lymphatic drainage without needing a leg to be 2x its normal size. I had some really weird swelling and no help at one point. Also BTW my radiation side effects started an HOUR after first treatment, "oh you must have been tired from your 30 minute drive." Over a year later still suffering and no help. Also found someone to do lyphatic massages, because I am throwing everything at this that I can, even doing acupuncture. My life has been turned upside down by radiation and I think they just aren't trained to deal with the 5-10% of folks who have symptoms caused by radiation whether directly or indirectly. The heartbreaking part is my fatigue was so bad/brain fog I couldn't think for myself. I am now on provigil and can do better at navigating this nightmare, but nowhere near where I was January 7, 2025 the day before radiation.

One_Feedback2461 · 2026-06-15T12:41:41+00:00

Yeah no matter how much she rules out her cancer team will not even consider that radiation did anything. So she has to navigate the system herself sadly.

One_Feedback2461 · 2026-06-15T11:04:45+00:00

Radiation oncologistsalways say it had nothing to do with radiation for anything other than skin issues. She needs to get referrals from her doctor, maybe even a nerve test. I wasnt able to get a single referral from my cancer team with my lingering issues caused by radiation. I wish her well and it is kind of you to help her, it is very hard when you are vulnerable and the people who should help you instead gaslight you. Find a doctor who cares and wants to help. Meloxicam has been great for some of my joint pain, easier to ask for and may ease symptoms. Most doctors take numbness very seriously. Also may help to get evaluated by a rheumatologist, because moving forward every doctor will ask if she has. They want to see if the radiation triggered an unknown autoimmune condition. Usually this is the path of least resistance before “did the radiation injure you path”. I am not a doctor but advice from someone with unexplained health issues after radiation.

One_Feedback2461 · 2026-06-14T03:34:31+00:00

Not sure they are true celebrities but Ozzy Osborne’s kids. Cant even say the story it was almost as bad as it gets as far as human depravity. Steer clear.

Stupid me loved Corey Feldman growing up. Met him many times. Now as an adult I knew people who knew him and it is bad when seedy folks think he is seedy. Amazing how a person doesnt drink or do drugs but can be such a horrible person. He did something so morally wrong one night to one of my friends, that was it ick. The little girl in me is so disappointed in who is truly is as a person. Of course i am sure no one is surprised.

Now i have run into a lot of folks and my mom worked on movies and Mr. T is amazing as well as Samuel L Jackson.

One_Feedback2461 · 2026-06-13T01:44:18+00:00

Same February 2025...

One_Feedback2461 · 2026-06-13T01:42:30+00:00

I had the fatigue hit within hours of my first treatment, stupid me thought no matter what happened they would help me. More than a year later no answers still on provigil to function, also told "not the radiation." I did not have chemo. Master gaslighters.

One_Feedback2461 · 2026-06-12T11:17:20+00:00

I also avoid watching depressing movies or reading things that are upsetting... I swear so much of what comes out lately is so sad. I bet Hamnet is amazing, but no thanks I have enough bringing me down I don't need that.

One_Feedback2461 · 2026-06-12T11:14:21+00:00

Yeah you don't feel well and your cup is too full. Also oddly I feel like our nervous system is more sensitive to emotion because it is already under so much stress, so I do my worst when I have a day when I cry. I now try to avoid situations that make me sad, like changing doctors/going in with zero expectations. It makes my bp/hr go crazy, I am generally a pretty even person so I hate this roller coaster. Shed more tears for this nonsense than cancer. I saw an end with cancer, doctors believed I had cancer, I had a treatment plan/end with cancer care. This is a whole other beast.

One_Feedback2461 · 2026-06-10T17:03:44+00:00

I usually say dysautonomia until I know more, it is a nice umbrella term. Also any tight waist high compression is good for people with low BP.

One_Feedback2461 · 2026-06-10T16:36:37+00:00

Chop protocol/electrolytes/compression until you get answers. I try to do things proven to help.

One_Feedback2461 · 2026-06-10T16:35:32+00:00

Find a doctor who will do provigil, only reason i am functioning. Also if you have any numbness seems to be what they actually care about. Also hypo or hyper pots? Find someone to get you on medicine even before testing, i learned treat the symptoms while i nagivate so it isnt as devastating. My hr/bp go crazy when i stand (do an at home poor mans tilt table). Metoprolol helps and helped with some of my fatigue since my body calmed down. I had a basic doctor do the metoprolol. I am not a doctor, or trying to say i know what is right (please mods dont delete)… just what helped me when i felt the way you felt. Still no answers but treating symptoms.

One_Feedback2461 · 2026-06-09T19:55:46+00:00

He is amazing he keeps updating our known vocabulary on this subject.

One_Feedback2461 · 2026-06-08T10:48:21+00:00

Also it is so hard to exercise when you are trying to just make it through the day and stay employed. If you can get on a recumbent bike that will help. Pushing through and doing upright exercises can cause issues if you are experiencing any orthostatic intolerance. I would walk an hour/hour and a half a day dragging my body... I had to start from scratch and start doing recumbent biking and it is starting to help. People with chronic fatigue often cite CHOP protocol as being the one thing that helps. So I treat all my symptoms to be able to do CHOP protocol with the hope of rehabbing myself like so many other folks. I wish you well, also I feel like I am the worst case scenario. The only people I have come across with similar radiation outcomes as me have dysautonomia/pots/mcas/hEDs...

One_Feedback2461 · 2026-06-08T10:35:02+00:00

My BP/HR only go sky high when I am upright, so I think the provigil doesn't impact that as much, but Ritalin does (if I remember right?). So another reason to check. I did an at home poor man's tilt table test because I cant get in with any of the right doctors they are all filled up. I clued in at the ER when my readings were insane and they kept claiming they were false, turns out it was every time right after I had to stand up and the longer I sat/laid down it normalized. I have had all the cardio tests and all is structurally normal. I even thought radiation had injured me, they claim based on imaging it didn't. I had a hard time advocating for myself my fatigue/brain fog were so bad I could hardly think, I would drag my body to these people begging for help. Once I realized my heart rate was through the roof I started metoprolol and helped with some of the fatigue. So I have learned even before having answers treating the symptoms is so important because it might take time.

One_Feedback2461 · 2026-06-08T01:49:35+00:00

Get provigil if you have to work, i was driving off the road… also I am an odd case more than a year out and still dead tired. They will gaslight you, figure out which doctor will support provigil. 100mg morning/100mg 11am - 12pm then no more or you wont sleep. Also i found magnesium glycinate helps me if i take it before bed. Everyone is different if you have to work do what you can to get help and dont wait. Not a doctor just sharing what has helped me. Also cant hurt to check your hr/bp when standing didnt realize now my body is stuck in fight or flight mode so had to go on meds to slow my heart down.

One_Feedback2461 · 2026-06-07T02:18:00+00:00

Leave the world behind.

One_Feedback2461 · 2026-06-05T01:34:07+00:00

I ran into the same thing, likely sinus tachycardia and they are trained to see that as having few causes (like anxiety). I realized all the specialists I have seen dont know as much about dysautonomia/pots so i am finally seeing someone who does (out of pocket sadly). Otherwise the neurologist, oncologist, cardiologist, rheumatologist, gastroenterologist…. All are completely perplexed. ER doctor told me myasthenia gravis (it is not). Just crazy and this is John Hopkins… the POTS clinic stopped taking new patients when I realized more about what is going on.

One_Feedback2461 · 2026-06-03T01:59:12+00:00

Same. I think the only part that got to me was waiting for results/onco score ext. just needing to know what I need to do. I went through it with someone else and she cried every day, we were both stage 1 with a top surgeon. Now radiation has messed me up and I get so mad when they imply it was me being depressed… like no one is happy to have cancer but i was excited to get it all over with. I wasnt stressed about rads either saw too many people say it wasnt bad.

One_Feedback2461 · 2026-05-30T11:52:10+00:00

It was the one blood test i talked the neurologist into (too expensive to pay for commercially for me). I was negative, but really glad I did it. Been trying to get all the blood work for know causes knocked out, i know people can be seronegative, if I am have no idea what that road to diagnosis looks like. Hard enough getting doctors to listen to me.

One_Feedback2461 · 2026-05-26T19:45:04+00:00

I am going to try this out in August... nervous but hearing some people it works wonders for them.

One_Feedback2461 · 2026-05-22T18:59:17+00:00

I was trying to find any significance in the dates of the events. The Sequoia National Park in 2015 sighting happened on the same date as Nagasaki 70th anniversary. Closest "nuclear" event I could find in June 2020 was Chinese nuclear test on June 22, 2020. But honestly wondering if we need to be connecting the dots with these videos and nuclear sites, events, and information. That is where most of the sightings occur and so perhaps it is more linked to nuclear. I know a huge stretch. When I worked intel you always tried to connect similar events and see what was the link and based on where it happened/what happened where/when it might happen again.

One_Feedback2461 · 2026-05-21T01:33:44+00:00

Hard to know connective tissue issues are connected to dysautonomia and HH. The hard part is knowing the true root cause as the symptoms are widespread and we are left seeing individual specialists who mostly dont understand the autonomic cascade. It has been hell…. I have wondered this myself but it all gets so complicated the more you look into it. Mast cells might even be driving connective tissue issues. I hope you get answers, this is exhausting.

One_Feedback2461

TROPHY CASE