Clueingforlooks

Thanks for replying! Sorry to hear you’re still struggling with this. Definitely something that’s hard to manage. A lot of the time recently i feel like I have high bp when it’s only 110/75 and around that. I’m taking propranolol and fludrocortisone but it obviously doesn’t help enough. Tried Clonidine too but it was too bp lowering and caused a lot of fatigue. Hope we can work this out eventually.

Bump

Just read your post and can relate! My bp and adrenaline can easily go up quickly with just a bit of salt/electrolytes etc. it’s like I’m too sensitive to salt or something. Worst thing is, is that my bp goes too low as well and I need some salt and fluids for it but if I do then it just makes my adrenaline worse instead. Have you found any solutions so far? @p8d

Hey everyone, All of a sudden my adrenaline rushes have got worse again. I haven’t changed meds or anything. Then I’ve started feeling like I just can’t get my body to move, talk and sometimes breathe although I can still technically force myself to do these things. It’s really hard to do anything and is adding to my normal fatigue. I’m confused what this feeling like I can’t move thing is since the first couple years with pots I didn’t have this at all even when I was really ill then. I feel like it’s linked to the increased adrenaline I’ve been having lately but still don’t know why it gets worse randomly. i just want to be able to function at least a little!

Yeah I can’t really tolerate baking soda with my pots. Makes my adrenaline worse, I think too much sodium at once even if it’s a little bit. And I can’t try Pepcid because it interacts with one of my meds unfortunately. Still super struggling, seems like the longer I take a ppi the more my reflux starts to come back and get much worse. Still unsure if it’s my nervous system/adrenaline making it worse but surely the ppi should consistently help and not become ineffective.

I do avoid overstimulation as I’m pretty much housebound due to the rest of my symptoms. Yeah an operation is last resort for me especially since I’ve had two operations in the past and it was difficult to recover from them and I’ve had different symptoms (mostly more severe) with my pots ever since. My doc has mentioned to me about the operation. I guess we’re still trying to work out why it has gotten so bad. It’s pretty hard to cope with the gi issues at this stage on top of my normal pots symptoms

I’ve tried pretty much all the ppis and ranitidine and they all cause bad side effects (IBS, more nausea or worsening pots). Yeah most of my diet now consists of mostly rice, porridge, chicken, turkey and veg. I don’t think there’s much else I can change in terms of diet and it hasn’t claimed down my stomach much. I’ve tried all the basic acid reflux prevention lifestyle changes and it hasn’t made a dent in my symptoms annoyingly.

Can relate! I have had both too fast or too slow digestion all this year. Glad you could get yours under control as much as possible. Medications that I’ve tried and don’t work/give me more side effects lansoprazole, nexium, omeprazole, aciphex, quickeze/tums, gaviscon, Mylanta, anti nausea meds and ranitidine. (Still on max dose of pantoprazole for now even though it only helps a bit). Not sure where to go from there in terms of at least band-aiding the discomfort for now. What lifestyle changes helped your reflux?

Update: gastric emptying study showed normal emptying. Still struggling a lot and my pantoprazole is still not helping enough. Nausea from the reflux is horrible all day . I guess I’ll try and get in to my Gastroenterologist again, don’t know what he can do so I can get some relief.

No I don’t and I haven’t changed my meds when it started getting worse. Very confusing as to why it’s decided to be this bad now. Unsure if my pots is triggering it.

I sure hope it does! Any of the ppis seem to make my adrenaline worse for some reason and my acid eventually comes back along with worsened IBS. So frustrating, Thank you x

Thanks! Having it this week. In a way I hope it does show something, at least it could explain some of my symptoms then. That’s so frustrating that it didn’t show anything on the day.

I’ve tried to cycle meds and and most gave me bad side effects. I could tolerate lansoprazole but after a couple of weeks still on it my acid reflux came back worse along with IBS diarrhoea! ive got a gastroenterologist and he’s ordered me to have a gastric emptying study and a 24hr ph monitor (really don’t know how I’m going to stop taking meds for it as I already feel like I’m going to vomit after most meals). In the mean time though he doesn’t know what to do and I’m suffering not being able to eat properly. 😕

Sorry to hear you struggled with it. Thanks for the suggestion! I think if I could get the actual acid reflux under control the nausea would go away. Unfortunately having protein drinks or even milkshakes make me feel just as awful. Also tried lactose free but no different. So confusing when the acid reflux meds just stop working for me after a while of taking them.

Thanks everyone, I do think it’s linked to my POTS in some way. Like @Pistol said I might be getting gastroparesis symptoms when my bp is low, which is more often than not these days! But not sure how I’m going to get my pots symptoms under control more than I’m already trying. I keep getting worried that I’ll vomit up my meds or not be able to take them in the morning as my nausea and reflux is the worst then. For a couple of hours in the morning I have to keep myself calm to make sure I don’t vomit. It’s miserable and the docs just don’t get it. A dietitian even said well if you still feel bad eating plain foods (low acid etc.) then you might as well eat everything because I’m low weight. Well nope because the foods I’m not having do make it even worse than it already is. So frustrating, she even told me to have chocolate!

Thanks guys, my adrenaline is worse when my gi symptoms are bad but sometimes hard to say which comes first. I’ve stopped the lansoprazole as I’m thinking that it has been giving me the diarrhoea as a side effect. I’m taking pantoprazole which is what I used that take before that. I can only hope it settles down to an extent. Very frustrating as other antacid options give me side effects or upset my gi due to additives. Unfortunately I can’t tolerate licorice as I’ve tried in the past as it gives me hypertension and makes my adrenaline worse.

Thanks for replying, I tried Zantac a couple of times and it didn’t do anything. Also when I took it I got an adrenaline rush so I’m not sure if I’m sensitive to it. I sometimes get congestion but it hasn’t been too bad lately. Before the lansoprazole I was constipated but the past couple of days since the ppi has ‘stopped working’ I’ve been getting abdominal cramping and diarrhoea. And the acid seems worse than ever as I can feel it wearing the enamel away on my teeth! So frustrating, I don’t want to do more damage to my body.

Hi everyone, I’ve been pantoprazole for a couple of years for acid reflux, but the past couple of months the acid came back a lot worse, even on the max dose. I tried most other ppis but they irritated my pots symptoms. Lansoprazole is the only one I’ve been able to tolerate. Initially it did help but after a couple of weeks now the acid is getting way worse again on the same dose. Been to Gastro and they’re confused why it would be happening. I don’t know what to do as I’m in so much discomfort and anything I eat causes more acid reflux. I can’t tolerate things like tums (calcium carbonate) for some reason it causes hypertension and can’t tolerate gaviscon either. Desperate for some relief as I’m loosing too much weight not being able to eat properly.

If my adrenaline is really flaring (like a sudden stressor) then I could get a flare of my IBS and some nausea. But the severity of the acid reflux that I’m getting now isn’t usual for my adrenaline to cause. My only thought is that my body is getting more and more irritated in the long term getting stuck in fight or flight so it’s creating more problems. I’ve also been having a problem with salt causing more adrenaline than it ever used to. Have no idea how I’m going to fix it. But even small amounts of salt in food lately spike my bp and my adrenaline gets worse and worse. My resting bp can get quite hypotensive so its not like I don’t need the salt. Ugh it sure is frustrating.

So sorry to hear, adrenaline is awful. I’m struggling with unpredictable and mostly constant adrenaline too. My stomach has been acting up as well! I’ve tried different ppi meds to what I was on before. They worked for a bit but the acid is getting worse again. Don’t know what do to either as I can’t keep increasing the dose. Seems like my body gets immune to them after a bit. Hope you can find something to help!

Yes I take fludrocortisone and propranolol, I can’t tolerate midodrine as it makes the adrenaline worse. Tried clonidine for the adrenaline but it lowered my bp way too much.

Yes I have, even various electrolyte drinks makes my adrenaline worse too

Yes I have, even various electrolyte drinks makes my adrenaline worse too

Hi everyone, I’ve been having these symptoms over the past two years and still haven’t found out a way to help it or why it’s happening. When I first got pots this wasn’t an issue at all. My bp is regularly on the low side 90/60 and lowest 70/40 however, when I start adding salt (from foods or drinks) into my diet my adrenaline just gets worse and worse. If I continue my bp gets hypertensive, head pressure, shaky even if my bp was on the low side beforehand. Even a small amount of sodium in something can make the adrenaline worse straight away! Sometimes my adrenaline keeps getting worse and my body ‘feels’ hypertensive with the head pressure and adrenaline but my bp stays low. Worst thing is I can’t avoid salt altogether because my bp drops as low as 70/50 especially at the end of the day. Tonight my bp is 80/55 but I feel really wired and jittery all day. I can’t have anything with sodium in it because I’ll just keep having too much adrenaline but I don’t feel great with low bp either. It’s a catch 22. If I just drink plain water it doesn’t really do anything to help my bp. I’m on fludrocortisone and propranolol and I’ve tried adjusting doses and it doesn’t help the issue. Can’t tolerate midodrine. Has anyone had this problem, being sensitive to salt? Anyone know why and how to help it? No one has been able to help me with this so far.