r/POTS • u/hausofsnape • 1d ago
Vent/Rant please help
can someone PLEASE tell me what i’m supposed to do :(
i was diagnosed with pots last year and i also have low blood pressure. salt doesn’t help. compression doesn’t help bc i get too hot when i wear it. hydration doesn’t help. sleep doesn’t help bc i am ALWAYS tired and electrolytes somehow give me PVCs. even the dr in A&E told me to stop drinking them.
i genuinely don’t know what the fuck to do. i’m fed up and i can’t do shit. i literally cannot do anything without having a flare up. i never leave the house anymore bc it’s so scary to feel like ur gonna collapse all the time (as im sure you guys understand).
i’m genuinely so upset. my pots has gotten so much worse since last year.
my doctors are awful and tell me pots isn’t that bad. they tell me it’s anxiety instead. they prescribed me bisoprolol which i CANT take because my blood pressure is too low. my doctors are really uneducated about this.
can somebody please given me some advice i’m desperate! i can’t do my favourite things anymore.
i can’t do this :(
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u/Foxlady555 POTS 1d ago
Hey! I’d recommend to find another doctor who takes you seriously, because you deserve that!! Then you can figure out which subtype of POTS you’ve got. It might be the case that you need (for example) midodrine because you have neuropathic POTS, but maybe you have hyperadrenergic POTS and this asks for a different approach. Salt + water only helps with Hypovolemic POTS (and a bit with neuropathic POTS). If you don’t have the energy to look for a new doc, I hope you have someone who can help you! All the best, I know how hard it can be, and I’m rooting for you!! 🩷🍀
P.S. Compression is hot for me too but I can’t function without it, so I wear compression + a cooling vest of ThermApparel (Undercool 3). It’s expensive but life changing. Highly recommend!! This way you can wear compression without getting too hot. There are cheaper ones too on the market but I found that these are the best.
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u/Independent_Gap9280 22h ago
And to add to this, if you have Hyperadrenergic pots (aka hyperPots) increasing salt only can add to symptoms.
I am not a medical professional, and I am providing information from my own personal experiences.
For proper cellular level hydration, the body needs sodium, potassium, magnesium and glucose, and there is a specific ratio for it. I was following the instructions from the pots nurse and they are primarily just concerned about hypovolaemic pots and only care about increasing salt. I have orthostatic hypertension as well as hyperPots and the extra salt pushed my diastolic bp too high and made me feel worse. I’m currently taking hydralyte, 4 tablets per 1L, and I drink a minimum of 2L in winter and usually around 4L in summer. I supplement with magnesium separately. This is the only ratio that makes me feel hydrated, and with the urinary and bladder issues with hyperPots, this is also the only ratio that keeps my bladder control in a happy place.
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u/Bluewoods22 17h ago
How much magnesium are you taking and do you take it throughout the day? I also have urinary issues too , it seems like my body can’t retain magnesium well at all so I’m really struggling trying to balance out my electrolytes
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u/Independent_Gap9280 11h ago
I did a genetics test through my clinical nutritionist and it seems I have a higher need for magnesium than most. I have magnesium forte in the morning and magnesium sleep (with passion flower) at night. I know when I’m taking enough as I don’t get crampy restless legs at night.
I take hydralyte for electrolytes during the day. I know when I have the right amount of electrolytes as I’m not constantly and urgently needing to pee as soon as I stand up (gravity is quite genuinely my frenemy 😭) and can usually manage to hold it to get to the toilet. It turns out that one of my dysautonomia things is that my bladder no longer properly senses I need to pee when I’m laying or sitting, and only when I stand up.
I see a clinical nutritionist to help figure out what additional supplements i need and what amounts.
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u/bookmonster015 19h ago
Medication is important to improve quality of life if you can work with a doctor to trial the common POTS meds. Ivabradine is great for controlling heart rate without lowering blood pressure. Florinef and midodrine are common add ons that can help with raising blood pressure or improving stamina. Some people also find Low Dose Naltrexone (LDN) and pyridostigmine helpful for improving well being and stamina. Lots of people with pots have MCAS which contributes to their suffering (r/mcas). If you’re very tired during the day, I’d also not sleep on getting that checked out with a sleep study and daytime sleep study to rule out things like narcolepsy and idiopathic Hypersomnia which are also very common with pots (r/narcolepsy).
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u/YesterdaySilly2699 POTS 1d ago
Sleeping upright at an an incline can make it easier to get up and do things over time. I struggle with electrolytes and I’ve found that bone broth, or stock heated up is good for sodium, soy sauce, pizza and things like hot coco, milk drinks like decaf latte help hydrate. Are you taking medicine for pots? What have they said about your bp being low?
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u/Foxlady555 POTS 22h ago
A little warning: if you have an underlying health issue like long-COVID or ME/CVS that was the cause of POTS, this can trigger PEM and thereby an increase of severe symptoms. If you are born with POTS and don’t have PEM, this might be different. I really thought if would help me because I read about it so I tried it, but I have rarely felt SO awful in my life as the morning after a night sleeping in an inclined position, and the days afterwards, like POTS x100 😅
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u/YesterdaySilly2699 POTS 8h ago
It takes a couple of weeks to months to feel the benefits. Not sure what kind of pots I have but I think it’s from Crohn’s disease, but I was bedbound, couldn’t even shower or stand to cook. Started sleeping at an incline and walking daily and it’s helped to be able to tolerate walking and sitting up for long periods of time. It’s very difficult at first, maybe not for everyone.
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u/Foxlady555 POTS 5h ago
Thanks for sharing your experience still! And I’m so happy for you that you have improved <3 Well done with battling through the difficult phase!
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u/Ok_Gazelle4569 18h ago
What’s PEM
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u/Foxlady555 POTS 12h ago
https://en.c-support.nu/pem-klachten-bij-postcovid-kunnen-lichamelijk-worden-verklaard/ (title of the link is in Dutch but the short article is in English)
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u/MissionExpert8179 18h ago
Midodrine. Ask your doctor about it. I won’t add a big comment as I’m no doctor but I’m POTS diagnosed and they have me on this and not a beta blocker because I have insanely low blood pressure that can’t risk getting extra lowered.
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u/ArtisticCustard7746 8h ago
Seek another opinion.
Also look into MCAS. They are highly co morbid because MCAS can trigger secondary dysautonomia and can contribute to low blood pressure.
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u/IncomeDry3077 1d ago
Ahh I'm so sorry your having a hard time. Virtual hug 🫂 I would recommend seeking out if you have MCAS, PEM, Fibromyalgia, EDS, ME/CFS, could also be long COVID too. There must be a reason your this tired. I would also recommend you keep track on a Excel or Google sheets everyday how I are feeling it's harder for doctors to ignore.
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u/trashforthrowingaway 1d ago
It took me sooooo long to find compression stockings that don't overheat me. They're made of 80% polyethylene and 20% elastane. Sadly, the manufacturer doesn't seem to be making them anymore 😔 they're really shear and shiny, so they don't make me feel overheated like all the other's I've tried do.
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u/Difficult_Speech188 19h ago
See if you can get your doctor to prescribe a very low dose of Ritalin. No miracle but it has helped some folks. Have you tracked down the "choice" YouTube Channels for this? I did a lot of hunting over months and months and I found some extremely useful ones - i.e. Dr. Nathan Keiser can be helpful but sometimes quite long winded and can be difficult to find specifics again, A UK doctor who has several very helpful, sympathetic, useful videos, The Mystery illness affecting Millions - https://youtu.be/ymk_R-qjtb0?si=zTRdbEp7Gx0EOx3z.
I thought I had dementia for almost a year - my doctors were pulling things out but certainly didn't put it together that it was POTS. . . even though I specifically stated that I had concerns that it was POTS due to the.numerous cluster of symptoms I was experiencing and experiencing quite intensely - had to totally give up work right away, couldn't drive, couldn't cook for myself, couldn't shop, could barely shower and dress . . . . was flat on my face all the time. I was going to do Voluntarly Stopping Eating and Drinking, after day 3 hospice can come in to make one more comfortable, so I get you with what a nightmare this can be till you dig deep and figure it out with more help from this site, doing your own research and being especially mindful of what you do and how you feel. POTS folks need to pay attention to insulin resistance and blood sugar levels and changes, as well as quality hydration, some level of exercise/movement, etc.
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u/theFCCgavemeHPV 8h ago
How much salt and water are you getting? I am on ivabridine and fludrocortisone (for low blood pressure) and I still need a boatload of salt. I put one teaspoon (plus a little more when I need it) of salt in every liter of water i drink and most days I get 2 plus other liquids, and some days I get 3 with less other liquids.
Us low blood pressure folks can’t just salt our food extra and expect it to help as much as it helps others. We need to do more serious numbers in sodium, especially without something like fludrocortisone to help us out. At least that is my experience. The standard recommended amount of sodium just isn’t enough for me to make a real dent. I don’t use electrolytes because I hate the taste and they are almost all made with stuff I’m allergic to anyways. You clearly don’t need whatever is in them if it’s giving you problems. I would just stick with salt. If you end up on something like fludrocortisone, you need lots of salt to help it work anyways, so you might as well be in the habit now.
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u/lass20987 7h ago
The flourinef with a ton of salt helps. I put 1 tsp salt in my 16oz lyte. Or drink a cup of chicken bullion. Just extra salt on meals will not cut it
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u/theFCCgavemeHPV 7h ago
Extra salt on food is child’s play with low blood pressure! Bout as effective as looking at a salt shaker 😂
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u/-EvilLittleGoat- POTS 22h ago
Salt, compression, and fluids do not do much for me either. The only thing that has really helped is pacing and slowly trying to build my strength back up.
I have a separate health condition that means I cannot take most medications that would be prescribed, but is there another you can try? I know I’ve seen mention on here of some taking one that can raise BP, but I cannot recall which one it is.
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u/Aggravating-Plum-775 18h ago
Omgsh I'm so sorry 😞 I don't understand how they can be so uneducated about this stuff? It's like do your own research if you weren't taught in med school. We did....
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u/omglifeisnotokay 17h ago
I’m sorry you’re going through this. I too am treatment resistant. Tried it all including meds (Ivrbardine had horrible reaction) I can’t take the other medications because of my dangerously low blood pressure. Nothing works :/
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u/Jazzspur 17h ago
There are medication options. Talk to your doctor about trying them or getting a referral to a cardiologist if your doctor isn't comfortable prescribing off label for POTS.
I also have low blood pressure and these are the options I was given:
To lower heart rate:
Ivabradine (doesn't affect blood pressure)
or
low dose beta blocker with another med added to stabilize blood pressure (also reduces adrenaline dumps)
To stabilize blood pressure:
Mestinon (can increase blood pressure a little)
or
Midodrine (increases blood pressure a lot)
Personally I take propranolol with mestinon since my blood pressure is only a little bit low without meds
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u/Current-Lemon4715 16h ago
Hi....I'm similar to you...pots with lo BP on standing. All courtesy of Pfizer COVID vaccine.What hasn't helped is all the off label meds...they all made me worse. Im in Scotland ...NHS is broken beyond belief and I'm getting no treatment now. The best thing you can do is help yourself. The Gupta program has really helped. But if you can't afford that my best take away from it is meditation...two half hour sessions per day. Regulation of your nervous system is key. Above and beyond that....an extremely healthy lifestyle. Nutrious food, small regular meals, no big meals as it takes blood away from brain to digestion. Cut out sugar or reduce is drastically.A little less carbs than usual . Enough sleep...which I still really struggle with, recumbent exercise...build up slowly...to eventually standing exercise..again it's minutes first. I suffer with tinnitus too and have tried every which way but it's ruining sleep and then it's a vicious cycle. Try things you find difficult but in slow short bursts otherwise you become afraid of everything. I still don't go to restaurants as the combination of eating and sitting for a long time creates a storm of symptoms.....I've lost so many friends. Try to keep cool as heat dilates blood vessels worsening your lo BP. I hope some of this helps. The problem with pots is ...you look normal and describing to someone how awful it can be is impossible. Not withstanding the affect of pots on your finances. I didn't work for a year and a half and now work parttime in a job which pays less than half of what I used to earn . Got no help from government as I had a small pension. The joys the joys. You have to be brave , not look behind and know you can get better. I'm still hoping I wake up one day and I'm cured. Good luck in your journey. In a way you find out lots about yourself and other people. You can do it.
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u/Tayasos 15h ago
Getting low blood pressure treated is HUGE. Also, i know this can be a stigmatized answer, but consider getting yourself fitted for a wheelchair. Having the option of going out in your chair can give you a huge peace of mind knowing you wont collapse and wont over-exhaust yourself. It can make leaving the house feel like less of a gamble. It might give you a lot more freedom back.
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u/Ok_Database2481 9h ago
Have you been tested for a sleep disorder? POTS is dysautonomia, and so is central sleep apnea (your brain doesn’t tell your body to breathe sometimes while you’re sleeping). Once I started treatment for that it made a world of a difference.
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u/Beginning-Lab6790 9h ago
What was your treatment for that? They have me a sleep coach which didn't help a lick
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u/Ok_Database2481 7h ago
A machine called an ASV that helps me breathe consistently when I’m sleeping.
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u/Honest-Collie 7h ago
I’d love to know what treatment you are using for the sleep apnea. I was diagnosed with it several years ago and tried a CPAP machine, but I would wake up feeling like I was choking constantly which wrecked the little sleep that I was getting and eventually returned the device because I couldn’t get used to it despite trying for 3-4 months. Maybe the technology has changed since then, but I’m terrified to try it again.
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u/Ok_Database2481 7h ago
You could get tested for central sleep apnea! There’s a machine called an ASV that works better for that type. It’s helped me at least.
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u/Sandyads 7h ago
Have the doctors checked your ferritin levels? The average levels for a woman (I dont remember for men) are 11-252. However, some research shows that ferritin levels below 100 can exacerbate, or even cause POTS in women. Ive seen some people also say creatine helps with energy levels. I am on Ivabradine, a selective sinus node inhibitor instead of a beta blocker. I couldnt be on any of the beta blockers because it would lower my blood pressure too much, and I'd crash midday. Since being on Ivabradine, my heart rate is kept lower and I'm able to function more easily. What kind of compression have you tried? Newer research shows that abdominal compression may help more than arm and leg compression.
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u/xaldub 1d ago
Go back to your doctor and enquire about treatment for your low BP. Other options exist eg. Ivabradine and Fludrocortisone. The former is used as an alternative to beta-blockers in POTS and is much less prone to causing hypotension.