What Is The Treatment For POTS?
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- Опубликовано: 19 фев 2020
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There is no "cure" for POTS however there are a few things that can be done to eliminate or reduce symptoms.
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The sad thing you realize is where and when you have been coping with this disease so long.
The symptoms didn’t start the day you are diagnosised.
No you suffer for years and years.
Thank you for the videos. Xo
Mine started in early childhood and now I’m 28. I hope a future pregnancy doesn’t hold me back.
@@cochiefemeralds3616 And can you walk, can you stand up a lot?
@@AnnaF33 I do walk but doing that and standing for a long time makes me sick even during my childhood such as walking around in the zoo all day
@@cochiefemeralds3616 Me i start to have this around 2 months a go after flu… i cannot walk coz i get very dizzy, my pulse is getting high, i cannot sleep coz I don’t feel good.. my cardiologist told me is possible to be pots and will gone soon.. but i read this can go in years
@@AnnaF33 yes I agree. I had an abnormal EKG & mini Holter monitor results. Low HR was 103 & highest was 169 even while doing nothing
For me, sleeping a LOT (like 9-11 hours per night) did more than anything else, and reduced my standing heart rate to around 90 over the course of 3 weeks (it had been often 125 and I even had episodes up to 150). Also I found that treatments that focus on the neural circuit (lymbic system, sympathetic/parasympathetic nervous system, etc) are much more effective than all the standard medical “management” suggestions.
Nobody wants to suffer and manage the symptoms. People want to find the root cause so they can recover, which can include low vit D, low iron, mold illness, LYME, other coinfections and chronic EBV. If you don't find the cause and correct it you can't recover!
I have iron anemia and low vitamin d
@Iron Bull curious as to how improving Vit D levels worked
What if pots is caused by brain damage post concussion? It’s for life then
@@TheBushRanger. nope, psilocybin works for TBI
@@RedRedux so psilocybin will heal the pots
i did the dr levine protocol for 8 months at a rehabilitation centre. i wasnt able te stand long enough to bake an egg before i went. now i can walk 30 minutes a day. Pots never went away but the protocol made me stronger so i can handle it a bit better, i need to keep walking2 x 30 minutes a day and stay upright to minimize symptoms. i still feel like shit every day and its a fulltime job to manage symptoms.
what kind of doctor do I need to see for POTS diagnosis????
Start with a cardiologist! If they do not believe you but you are certain of your symptoms, keep going to other drs!
@@ashleygabriellapladsen1850 I was to one of the cardiologist and she told me i have pots.. but thats it. She didn’t help me with more. She say this will pass in few months..
@@AnnaF33 Wow I am so sorry! That happened to me as well. The first cardiologist I went to took one look at me and said why are you in my office, you're so young (In my 20's). From then on, he treated me like I was crazy and had nothing wrong. I am still in search of a doctor who will give me a diagnosis :(
@@ashleygabriellapladsen1850 Me i have 31.. I don’t know why this happened now.. my cardiologist told me is because i had COVID in july and recently i had a bad flu and that’s why activate.. she say soon will pass, but i think she lied and she didn’t care.. Can you walk ? Me if i walk i get very dizzy and i feel some pressure in the chest.. and i breath hard ..
I am super hypermobile, flexible athlete. I had surgery 3 months ago and lately started to worry about my heart beats because its are going up to 206 for now was my max. I do lunges with smith machine and my heart rate is 185 and during rest it doesn’t go lower than 120 even if I sit between sets. I’m really struggling now, I also get body shaking, felling like to throw up, standing from couch and get black outs. Before surgery it wasn’t like this much.
I'm curious to know what surgery you had and have you been on pain killers for a long time and are you trying to come of pain killers.
@@robertjustinoff845 I had SLAP tear and I was with nerve block for 3-4 days and they gave me oxycodone which I did take only few and didn’t finish whole pack even. I’m not taking any meds since August.
Same here i have been experiencing this after my knee surgery. How are you doing now?
@@varun-72I went to cardiologist and I have POTS, so I’m taking corlanor right now and I feel better
@@anastasiyanagibina6899 is it a beta blocker? Should we take it life long? My cardiologist said i have anxiety and prescribed propanolol.
Gyms and personal trainers don’t want me 🤷🏼♀️ I black out, dislocate & sublux joints, I can barely stand up or take a step when the pain is really bad. Repetition makes the pain intolerable, I can’t stand for 10 minutes, on a worst day 30 seconds. Then if I go 10 minutes I have to sit down, then rest for 5/10 minutes. The next round I might manage 9 minutes, but the rest time increases and tolerance of the pain reduces.
My whole body, particularly my back, hips, knees and ankles scrams. I often feel like I’m going to collapse, but not in the same way as blacking out from POTS. If I have to do something like go to a supermarket and walk down a few hours I’m barely able to walk after. The symptoms can last days. So when it’s my turn to do school runs or teach a workshop I can’t do it after a flare of pain from whatever I did.
I’m sick of it, having the usual group of Dysautonomia, POTS, MCAD, EDS, with the associated effects, itching, blacking out, skin rashes, if I brush against something I get a rash, dry mouth eyes etc, I can’t control my temperature very well and sweating from it is embarrassing, thankfully I don’t have a bad odour from it, stomach issues, pain, dislocation and subluxation, fatigue….
I’ve had a tilt table test and 24 hour ECG, that gave me a raw rash the size of the pads, it looked like an ulcerated deep tissue blister. That was the end of 2019, I’ve had appointments that the hospital cancelled 4 times. I’m still waiting for an appointment with a cardiologist. I got about 3 minutes after the test post TT test, where he confirmed it’s pots. I just want to feel better, have a life and do things I used to. It doesn’t include anything extreme like sky diving!
Hoping you can see an Ehlers Danlos specialist to help get things managed better. Have they tried Mestinon (Pyridostigmine) to treat the POTS and gastrointesinal issues? That's one of the more popular medications for EDS, due to it being able to treat multiple EDS issues. It's an older medication that has been repurposed to treat other things.
Clonidine or its sister drug Tizanidine are popular for reducing pain in EDS patients, and can treat hyperadrenergic POTS right at its source by signalling the body not to dump so much adrenaline and norepinephrine into circulation.
Thanks for the video! It took a lot of time for me to get diagnosed, and it turned out that my POTS was a result of having hypermobile type Ehlers Danlos syndrome. It took more time to find which medications work best for me, since there's a wide array of different types of POTS medications available. I had adverse reactions to beta blockers and calcium channel blockers. What worked for me was a newer option called Pyridostigmine, which helps to treat my digestive dysmotility as well as the POTS. I also take Clonidine before bed to further treat my POTS, as well as to treat my insomnia, migraines, restless leg syndrome, and anxiety-like symptoms.
Other medications that can treat POTS include Guanfacine or Ivabradine.
Any update you're willing to share? I am curious how things are working out/what you do now to cope with symptoms!
@@ToddyWithaHotdog The medications are still working really well, and I'm thankful that I have doctors who have been willing to think outside the box and try those medications with me.
Hot summers tend to aggravate POTS a bit. I try to stay cool, and if I get breakthrough flares I can go in and get a saline infusion to help. Compression calf sleeves like marathon runners wear are also helpful for POTS patients.
Wow same exact boat with the hypermobile EDS & POTS. I’ll have to research that connection. This all started in my late teens & I was diagnosed 30 years later. 😮After 3 decades of being told it was ‘all in my head’…it’s all making sense now. Thanks for sharing your story & things that are helping.
@@wendylpa Glad you finally got diagnosed. We share pretty much the same story, which unfortunately is often the norm for people with EDS.
@@Dulcimerist Yep! I don't have a doc who understands who to treat POTS or EDS, so I'm on my own. I do feel particularly dreadful in the summers, so the heat is very triggering for me. I'm upping my water/salt intake & am getting fitted for compression stocks this week. I live in NC which is hot as Hades ~4-5 months a year. I feel so much better all winter! I'll def be moving North at some point.
Great summary! I’m sitting here in day 4 of a full POTS flare (~90/55 BP, ~100 resting HR) & feeling like hell. The only thing I haven’t tried yet are compression stockings. Can’t wait for those in 100 degree summer heat. 😆 Thanks for posting!
I'm sorry you're through this. I'm in the process being diagnosed myself
Go it doctor and get the medicine! Only that will help and drink electrolytes!
hello doctor i did a test on myself because I think have pots I took my heart rate laying down it was 72bpm and took it standing up 118bpm is that enough for me to go to a cardiologist
Are you serious mine goes about 150. Well you are lucky good luck...
Is there a corrective HR surgery for POTS? I don’t want to take beta blockers, but my heart rate randomly speeding up makes me feel terrible and even cough sometimes.
You'd rather look for surgical options than do the work that has been shown to work in majority of patients?
@@CompleteConcussions I have a long and dark history with medications. It was punishment in my home growing up. But update, I’ve been on a beta blocker for two weeks. Before starting the medication, I had naturally low blood pressure and my heart beat speeds. After starting the medication, my heart beat doesn’t speed up, I have almost zero palpitations. But my blood pressure stays super low (since it was already low to start). I stay weak, dizzy, cold, and tired. Im on the lowest dose possible cut in half twice a day. I’m not sure what my doctor will do.
@@aprilcarter3712 how has this worked for you? I am currently in the same situation
@@Jennaxm____ it was really bad. I never got out of bed, I threw up, and was having sharp chest pains. I stopped the medication..now I just manage symptoms on my own. I have episodes every couple of months or so. F that. Lol
@@aprilcarter3712 they started me on metoprolol taking 1/2 pill twice a day and midodrine and some type of steroid. I feel horrible taking it I'm not a huge medication person I'm only 23 and just received my POTS diagnosis. The meds have helped with my HR but I'm wondering if it would be better treating it naturally?
I was diagnosed with POTS/dysautonomia last month.
Any treatment yet?
@@tonyzanowic7442 once daily Nadalol
@@cochiefemeralds3616 update?
How you do now?
If it's hyper pots no salt.
Hyper POTS? I don’t understand what you mean. 🌸
@@lilacscentedfushias1852 Hyperadrenergic POTS. It's when the body dumps too much adrenaline and norepinephrine into circulation - which speeds up the heart, constricts the blood vessels, and can even trigger the "fight or flight" panic and anxiety response. Many doctors misdiagnose this form of POTS as anxiety or panic disorder, unfortunately.
How is this form treated I have this?
You need to find the root cause of what caused the POTS and address that. Just telling a patient to take salt and don't lay down all day will not help the patient. You have to address the actual root issue like they do at the POTS care clinic.
What are the possible root causes?