Memories of POTS Recovery II 

Hi. This is the 1st comment ive ever left on a channel. I came across your channel and bought your book a while back. after finishing it i want to say keep up the good work!! I think u are definatly on to something i suffer from pots, eds, mcas and an whole array of conditions. I had my first allergic reaction aged 2 and after many herpes simplex viruses and infections my health continued to decline. Its taken 30 plus yrs to finally begin to get the right help. symptoms of pots became worse during puberty. during an hospital stay in my 20s severe widespread erythroderma complications were missed and a heck of a lot of a medical mess up i ended up repeatedly sedated when a psych was called. Starting to high a antidepressant then antipsychotics was a journey that began of been on so many diff classes of psych meds misdiagnosed with schizophrenia. No tests were done so physical causes were missed. when withdrawn to fast from all meds except too high dose antidepressant for pots patient i was then taken off to fast. i was left bedridden pots so severe even laid flat i was passing out with so many autonomic and cns dysfunction complications. Many of the meds i was given acted on my limbic system and other brain areas, as im sure u r aware neurotransmitter levels are affected. my body function was so much worse. Thanks to severe determination, a loving family, friends, gp and cardio i not only have fought for my health, drs who were still claiming the misdiagnosis wasnt a misdiagnosis, although the psych had realised finally in writing now after gp noticed eps of brady and tachy on 24hr ecg and cardio had diagnosed pots. this was not schizophrenia.i now live with complex ptsd through so much. I looked into the effects on the brain and realised psych meds as confirmed by psych in writing had played a part in altering my autonomic nervous system via the limbick system. It made things horrendously worse. physical causes were missed for so long but then aggravated trauma through many events. At my worse i was bedridden for almost 2 yrs, hallucinating, pressure behind eyes, pounding in right ear, woozy, incontinent, vomitting unable to digest anything, bp and heart rate going up and down within mins, passing out numerous times a day even when lifting head, tingling, zapping in arms legs, seizures, hives, palps, angiodema, while sleeping waking intermittently gasping for air, breathing dysregulation, unable to coordinate, walk, focus, sweating, sleep dysregulation, within 3 mins of tilt test my heart rate shot up to almost 150 bpm from 80ishbpm, crying, laughing, seizures, mcas went crazy i could go on and on..... So although ive had many symptoms forever and flairs whatever happened in hosp all those yrs ago signs of inflammation, hallucinating, nose bleeds etc i developed features of psychosis now seen as physical complications missed. the improvements i have now almost 2 years on from been off those meds and cardio trying to restabilise thro baby dose sertraline which helped a lot as well as mcas, pots treatment, although my bodys a mess with added complications oesophageol dysmotility etc now. i have to take numerous meds from many specialists to counteract some of the probs of cns and ans dysfunction. Today i managed to walk almost 6000 steps without passing out on sticks and have many improvements. I looked into psych med withdrawals, serotonic syndrome at the time and used help, advice from people still a mess from those meds. Coupled with pots help, meds, drs etc and now a good ptsd counsellor a lot of determination including physio to make the most of good days. I also have chronic fatigue syndrome. what i went through i think shows so much what u are saying seems to be a key factor! Keep up the amazing work. i think u are doing amazing advocation, work and spreading the word. limbic system dysfunction and all u have said i feel is a key element! By a little of my experience been on meds that targeted these areas and what happened immediatly after and during. Im so glad u recovered! I know its horrendous but i feel it shows u can face anything! keep spreading the word and i hope others get on board with your suggestions and researchera pick this up. Gud luck!

Patrick ussher.... How are you and what are you up to?! 🍀

Hi Patrick! Now that you have recovered from POTS, are you able to exercise?

So very inspiring Patrick. Currently doing DNRS. Used to live in Jersey,Channel Isles. Can not wait to return back there once healed.

Fantastic video and very true, seek harmony is the way to come back to life

I just found out I Have hypoglycemia. In fact I’ve had hypoglycemia since I was a kid. So every 45 minutes I have to eat something to keep my blood sugar high. So how do we know that POTS is not caused by hypocalcemia? In that case what would be the cure? Vitamin D Deficiency and D3 lease to hypoglycemia because by not having D3 you don’t produce serotonin and you crave sugar because sugar’s produce serotonin thus leading to constant eating leading to hyperglycemia.

Ps immune suppressants have also helped and dropping the dose also factored in my decline

Hey. I have some good and bad news. With exercise and drinking lots of water and salt I am better with pots. Im not sure if I still have pots. My vasovagal syncope is better. I haven’t fainted for ages. My blood pressure is better and not low anymore or very rarely. My heart rate on the other hand appears still high and i have now inappropriate sinus tachycardia. It's also type of dysautonomia. I still find my fight and flight mode is totally broken. So I was wondering, I actually don't understand pots. What was your heart rate while you walked eg 500 meters. Because is pots when your heart rate increases by 30 but.. What happens to it if you start walking. So I don't really understand what happened with my Pots. My sitting to standing is better. Value rarely hits 30 points difference. Being female stopping my periods has realllllly helped. But I'm left with my heart rate going 130-160 walking. Again when washing my hair it's 150-170. Recumbent Cycling my heartrate can get to 150 but only if I work super hard. My calf raises has made my calf muscles stringer. Cycling my thighs. I'm still obviously very unfit etc. But yeah.... My cardiologist was pleasantly shocked my Pots is almost gone. But is it really gone if i still drink tons of water and salt? Obviously not. But I've tried a tablet for migranes and it helps a lot of my symptoms which I thought were pots. But then pots probably causes migranes. migrane is basically veins in brain being wide. So same as legs. Kind of scary. It really helps with sound and light sensitivity. Or its better due to my Pots being better. So I'm so happy I can walk better. I still have bad days. But I'm left feeling heart broken because... Despite all the hard work.. I have elevated heart rate but not when j stand up. But as soon as I make few steps. I'm yet to try DNRS. I have the dvds. My life is kind of stressed out atm and I'm afraid to try seeing I can't shut everything off atm. I still intend to do it. I need help with fight and flight mode. But I wonder... Do you know anything about elevated heart rate while walking? It's still considered dysautonomia. There's nothing wrong with my heart in any tests my cardiologist did. I found out I had it because of my sports watch. My cardiologist wouldn't have ever noticed if i didn't. So I'm left quite disappointmented. I can walk 2-4 -5km max. But I'm left exhausted and I can't do anything else. Whole day revolves around walking or cycling. But once I try to clean my room or do anything which requires any physical effort I'm feeling really sick, tired, exhausted, it takes me a week or two to recover form attempting to do some dusting. Can DNRS help with sinus tachycardia? And did you have It? Did you ever know what your heartrate was while you walked? Not just standing or sitting. I have still issues with nausia and I can't drive and it usually takes me 1-2 weeks to recover from any car drives eg trip to a doctors appointment. Any information re elevated heart rate while walking or showrriing? P.S. At least I can shower unaided now. But I'm quite heart broken, I now feel I'll never really get cured or be better. Although I suspect pots and vasovagal syncope and inappropriate sinus tachycardia are all part of the same.thing, broken autonomic nervous system.

Your channel deserves more subs and views than it has. Please keep it up regardless. You're doing good work, and I'm sure you will help a lot of people.