Clueingforlooks

Sorry to hear, it's very frustrating. Have you tried other beta blockers? It does seem the same for me the longer I take them the more the sympathetic side kicks in again to compensate for low BP. Just don't know what to do to stop that happening as I can tolerate vasoconstrictor like midodrine. And I'm already on fludrocortisone. When I was initially put on flecainide I was monitored in hospital for a couple of days but they didn't really tell me how bad it could be! But when I found out I still wanted to take because it helped my hyper side a fair bit. It's different for everyone so unfortunately I can say how you'll react to it. But I tolerated it really well and didn't seem to effect my heart rate or BP. Are you taking or doing anything now to help with adrenaline?

Thanks for replying, yes my vitals get way more variable when it's like this. Even taking the metoprolol.

I've been taking it for SVTs and a lot of PVCs. When I first started on it I noticed it helped the hyperadrenergic part of my pots significantly. He took me off it just because he didn't like the risks of the med. I had been on it for over 3 years and never had a problem with it while I was on it. I explained to him it helped my adrenaline a lot but he didn't want to listen.

Hi everyone, I used to take propranolol and flecainide. But my cardiologist wanted to take me off and try ivabradine which was a disaster. Was extremely sleepy and overstimulated. Now on metoprolol as I can’t tolerate propranolol anymore for some reason. On Metoprolol sometimes I have a week of feeling really stable but then all of a sudden my adrenaline comes back and gets stuck for weeks. It’s frustrating as I like the metoprolol but it’s pretty inconsistent and I’m exhausted when it’s not working. I’ve tried upping dose but doesn’t make much difference. I’ve also tried most other betas but they aren’t as helpful. Don’t know what else I can take to stop this happening as the flecainide used to help with my adrenaline as well. current meds Fludrocortisone metoprolol pantoprazole

I’m with you @Abe @Jyotimy symptoms have been the most uncomfortable I think they’ve ever been the past few months and last few days have been the worst. Sorry to hear that you’re struggling.

Sorry to hear, thanks for commenting. I don’t seem to have any hormonal imbalances as I’ve a had full work up of bloods recently. I’ve ruled out adrenal related things too.

Hi @Abe just wondering how your going with this symptom. It’s worsened a lot for me recently and nothing seems to be helping. Just so hard to move or exist!

@Pistol Thanks for replying, I haven’t tried an ssri so far, I’m sensitive to a lot of medications I’ve been wary that it might flare me up even worse and I’m already pretty weak. I do movement as much as I can but I’ve been going downhill a lot recently feels exhausting to even eat right now. My fight or flight getting worse has got me into this fatigue hole I think. Thanks so much xx @PotsieCrocheter

Sorry to hear you struggle with daily fatigue too, if I could just be a tiny bit more functional I’d be so happy but I’ve had no progress for over a year. Yes I try and sit up in bed all day/as much as I can, but recently I’m more exhausted/tired and well as fatigued so it is hard. Good to hear that it’s helping though. And I hope it can can helping you, it’s hard to tell sometimes if something is making a difference or not. That’s a great idea! Although even doing arm movements for me sometimes just feels like too much, but I do things here and there if I can.

Thanks, hopefully I can get my gi and fatigue to calm down soon! To be honest I practically feel like I’m in a never ending flare whatever I do IV fluids used to help me but now they overstimulate my system (even running slow).

That’s good you’ve found some things to help your nausea! Hope I can eventually find something that helps enough, I have tried ginger candies and tea before. oh nice! It’s the worst not having the energy to put compression on even though they can help. I’m struggling so much with fatigue lately, too tired to even talk or move. But my vitals look fine at the time. I know I need to rest some of the time but I’m having to rest/do nothing everyday and being too fatigued to function is not getting me anywhere.

Tried numerous anti nausea meds and even IV Anti nausea when I’ve been in hospital but nothing makes a difference 😕 xx

Thanks @PotsieCrocheter it definitely is frustrating! If my stomach wasn’t so sensitive between having gastritis and acid reflux AND nausea I think I would be able to hydrate better and hence feel a bit better with my pots e.g. a dash of cordial usually helps me but hurts my stomach now along with other electrolyte drinks. Yes I our bp can be all over the place! I guess my main problem is that my bp can get quite low at night 75/45 at the lowest and then even if my bp is acceptable I still end up feeling pretty faint during the day and can’t think straight. The docs I’ve been to have been useless about it 😒

What have you been treated with for your POTS? I’ve been on fludro and propranolol for agesss (and at differing dosages) but my bp and adrenaline are all over the place now and haven’t been able to control the reflux/gastritis. I’ve also tried midodrine in past and can’t tolerate it anymore.

@outofadream how are you going now with this? I’m struggling with the same thing and my ppi doesn’t help me enough anymore xx

Yes my ferritin levels were checked in the same blood test and they’re definitely all good. I didn’t have my b12 checked this time but in the past it’s been good (and I’ve had this high MCH for quite a number of past blood tests too). Next time I have bloods I’ll get b12 checked again, otherwise I guess it’s just the way I am.

My MCH is always just high out of range but my doctors have never mentioned it and I’m not anaemic. Would that be part of the thick blood problem too?

@issieTotally understand what you mean! But it seems that Florinef makes me both better and worse off at the same time. Like I’m bad either way if I bump up my blood pressure with salt or more florinef my adrenaline is actually worse not better even though it’s stopping my blood pressure dropping as much. So I’m unsure where to go from here.

Hi @issieI can relate to this! The first few years of having pots I had not trouble with salt and was put on Florinef which did help symptoms. But the last 3 years has been a struggle, I’m still on florinef but now consuming salt makes my adrenaline way worse and I sometimes get pain in lower back. I’ve tried reducing it but my bp goes too hypotensive and my fatigue/brain fog gets way worse. Very frustrating and all the specialists I’ve been to have brushed me off. My resting bp is low but my adrenaline gets bad at the same time.

Thanks for getting back to me. Still struggling unfortunately, feeling really faint like I could pass out but my bp is ok. Had some electrolytes the other day and it made me feel even more nauseous with adrenaline still can’t seem to win. I’m tired of this, nothing I do seems to help.

That’s good to hear. And also good to hear that slowing the fluids down helps your sister!

That’s good to hear that it got better doing it slowly, I’ll talk to my doc about it. hope you’re doing a bit better now!

Interesting, @Robert J so IV saline was the only way you stabilised vascular pressure? Does feel like that could be my problem yet saline still gives me head pressure and jittery feeling.

@Pistol Sorry to hear that you had to be in hospital recently. IV fluids definitely used to make a difference to all my pots symptoms but now when I’ve had them or oral electrolytes/sodium it just adds to the adrenaline/fight or flight feeling I’m already having. Whether my bp is low or high. Then sometimes I feel hyper with low bp then if I try to increase bp it just gets worse. Very confusing!

I haven’t tried them yet, but I’ll talk to my cardio about them next time I go! Just have avoided in past because bp gets low and increases fatigue.