Clueingforlooks

16 hours ago, p8d said:

@Clueingforlooks I still have lots of trouble with hypertension from doing anything much, talking on the phone, being upright, getting stressed because of filling out forms, dealing with insurance/pharmacies etc but switched the alpha blocker from clonidine to guanfacine ER.  The docs thought part of the trouble was rebound hypertension from the clonidine.  We have increased the beta, carvedilol, and I take a small dose prior to activity but it’s still a lot of reacting, including fluid loading at times. I started limiting fluids and completely stopped salt which lowers BP but my latest kidney function tests showed probable dehydration so...  I did a 24 hour blood pressure test that clearly showed the rise in BP while upright—161/93–but it went back down after sitting down and the overall balance of highs and lows was ok which is how they determine if it’s good control of BP or not for normal people. We are not normal and I doubt I ever will be again. Weather is a big influence on low BP so at the moment I am not dealing with that too much unless I have been upright too long or haven’t had enough fluid.  I am sorry that you too are struggling with this, I hope that you can find a better balance than I can.  

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! 

On 10/21/2019 at 2:28 AM, POTSius said:

I had moderate acid reflux and what helped me was a combination of pepcid and baking soda

The pepcid only did about 60% of the job and the baking soda did the rest

I take the pepcid in 3 doses throughout the day, seems to work best that way

I take about 1/4 tsp baking soda mixed in water maybe 6-7 times spread throughout the day

the baking soda is also very useful for managing when the reflux happens in the middle of the night, super quick relief

If you try it, you have to be careful not to take it too close to a meal (I typically wait about an hour) as someone once died from that (I think that is a super rare thing to happen though). I would ask your dr if you are concerned about that.

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. 

19 minutes ago, Pistol said:

@Clueingforlooks - lifestyle changes are mostly avoiding overstimulation and staying at home, this has helped both POTS and GERD.  Of course - I am disabled, so I can do that. Also following a daily routine of rest and activity/ exercise has been very effective. 

My friend - who suffered all of her life from severe GERD and IBS and has been unaffected by GI medications - just had a fundoplication and she is doing great. She told me she just used hot sauce for the first time in forever and had no heartburn.  Have you talked with your doctor about this procedure before? I am not sure if this would be something they would recommend for you but it does not hurt to ask! 

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  

7 hours ago, yogini said:

I am sure there are whole forums related to the topic of reflux, so it might also be helpful to do some research on the specific topic.   Glad you are revisiting with doctor.   There are tons of treatments and sometimes if oe med doesn't work anymore it's time to switch it up.

I have had severe acid reflux at times and have been on meds for it on and off for years.  And I think what Pistol describes is the same for me - I either am too slow/backed up or too fast at different times.  What has helped me the most has been identifying foods that work for me.  There is a list of foods that is recommended for reflux. I can eat simple carbs and they help absorb the acid - rice, white bread, potatoes.  Not really considered healthy any more but they work for me.  Plain chicken also works. Jello.  Foods which are complex, heavy, fatty,  fiber rich, dairy make things worse for me, so I avoid them or spread out the times that I eat them.  Smaller amounts are better.  

 

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. 

On 10/19/2019 at 10:52 AM, Pistol said:

@Clueingforlooks - I went through the same thing. EGD showed I was essentially being eaten by stomach acid yet Gastric Emptying study was normal. My GI said that I had digestive problems b/c my digestion was either in overdrive ( GERD, diarrhea ) or too slow ( gastroparesis, nausea, vomiting etc ), both caused by dysautonomia. I was able to get both somewhat controlled by medication, diet and lifestyle changes. 

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.

On 10/5/2019 at 4:01 PM, Stark said:

Do you take any benzos? They have caused terrible reflux for me in the past 

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.

On 10/5/2019 at 12:10 AM, bombsh3ll said:

@Clueingforlooks it is good that you are being investigated, I hope it leads to a more productive treatment. 

I have had reflux since childhood (weak gastroesophageal sphincter due to EDS) which worsened after each pregnancy, but I was lucky to find omeprazole consistently effective. Boy do I know about it if I forget one though!

Good luck with your tests,

B xxx

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 

On 10/4/2019 at 11:41 PM, Random-Symptom Man said:

@Clueingforlooks - Good luck on your gastric emptying study. My study showed nothing. For some reason my body refused to do it's usual shenanigans. I didn't have any bowel issues for four days straight. It was the longest I've gone without issues in a year. Now that I think about it, I should sign up for a Gastric Emptying test every day if that's all it takes for my GI to behave.

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.

On 10/2/2019 at 1:23 AM, bombsh3ll said:

Yes, it seems some people do develop a tolerance after a while & need to cycle meds. 

Have you got a good gastroenterologist to work with?

B xxx

 

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. 😕 

20 hours ago, bombsh3ll said:

@Clueingforlooks when I first became unwell nausea and vomiting were a major issue, & I lost about 6kg in 3 weeks. 

I used mirtazapine off label as an antiemetic and it was more effective than any drug with a human licence for this purpose.

I also to this day find supplement drinks/protein shakes very useful, have you tried any of these?

B xxx 

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!

17 hours ago, Pistol said:

@Clueingforlooks I was in the same boat before and took ppl twice a day, carafate four times a day, Zantac 300 mg at night, zofran as needed and gi cocktail as needed ( vicious lidocaine, mylanta and phenobarbital ). This improved the symptoms some but only when my POTS got under control did my GERD calm down. I would talk to the specialist that controls your POTS since you might benefit from a medication adjustment. This would also help with your adrenaline surges. 

12 hours ago, MomtoGiuliana said:

I have also had severe acid reflux at times that my POTS is also flaring.  I agree w Pistol that it can be all related; if your autonomic system is out of whack that can cause multiple medical issues.

One thing that I remember helped me years ago was deglycerized licorice.  Not sure why but it was more effective than any heartburn medication for me.  Since this is an herbal supplement I would talk to doctor or pharmacist before using it.

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.

3 hours ago, Random-Symptom Man said:

I'm sorry to hear that things have gotten worse lately.

I only get mild acid reflux compared to what you're describing. So, I can only imagine what you're going through.

The Zantac works for me. It's an H2 blocker because mine is allergy related. Do you have congestion? Or Allergies? When I get an allergic reaction, my mucous production goes off the charts, which messes with my stomach acid. I take Zyrtec as an H1 blocker, which helps with mucous and Zantac as an H2 blocker, which helps with my stomach.

Have you noticed any change in bowel movements? I know it's hard to tell when you can't eat much. But my bowel movements were one of the clues for my GI doc and allergists.

I wish I had more insight for you. I hope you find something that works.

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. 

23 hours ago, KaciCrochets said:

Clueingforlooks I feel you. I got great sleep on the hydroxyzine the first two times I took it. After that, not so much. It helps the burning but I'm still surging constantly. I feel lucky I was only up with surges for three hours before I managed to fall asleep, but I sure feel like garbage this morning. Do you normally have stomach issues with adrenaline? This is a new symptom for me. 

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! 

8 minutes ago, Pistol said:

@Clueingforlooks - do you take any medications? Maybe you are simply not well controlled on your medications? 

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. 

13 minutes ago, Pistol said:

@Clueingforlooks - have you ever tried sports drinks, such as Gatorade? They are specially formulated with several electrolytes that provide instant hydration. 

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.