I know I'm on here every week with a new symptom! Well I have awful new symptoms. I've felt this mildly already for some time but now it's got really bad. I have awful digestion problems which seem to coincide with awful heart flutters, and shakes, unbelievable weakness, sickness, the lot. Mornings have been so bad at times over the last few weeks that I feel I'm going to die. I've never known a full body experience like this. Once I've been to the toilet it tends to calm my whole nervous system down. Someone on here kindly referred me to something called dumping syndrome and I couldn't believe how horrendous the symptoms of that can be on your autonomic system. I have all these symptoms. It mentions changes in blood pressure and I have extremely low blood pressure already. I've got fasciculations all over including in my digestion. I can see it pulsing through my skin in my digestion.
Anyway, I'm proceeding with the muscle biopsy as I realise I have to try figure this out, even though I'm actually afraid to hear it.
My main question though is to ask whether anyone here in the UK has seen an autonomic specialist and whether it helped? I have a good neuro but he just asked me to lie down and then stand up and did blood pressure at both points. It was fine so no more said. I believe categorically 100% that my autonomic system is affected. I don't know whether autonomic issues are so specialist that its worth trying to find someone who specialises in this specifically.
Is it worth seeing someone about this and can anything be done to help manage symptoms? These symptoms are possibly the worst. I've had to have back up diazepam for when it's real bad as I feel like I'm going to die. If anyone has ever tried amphetamine,(only once as a youngster!) my worst attacks feel like an injection of the strongest amphetamine and you are about to die on it. It's just beyond awful.
I'm seeing a Gastro who acknowledged that autonomic damage can affect my digestion in the way I've explained. Not necessarily gastroparesis but an autonomic problem. I'm having an endoscopy but I do not believe any of these tests can actually demonstrate this damage. I was almost hysterical on my G. P this week as when the digestion spasms are bad my heart is through the roof and the amphetamine like panic goes hand in hand with it. She looked at me like I was having a breakdown and am off my rocker.
Does anyone here have these issues? Any autonomic issues making you feel this bad?

I have all of these issues that flare up off and on. Oddly enough 2 zantacs helps with some of this. Well, maybe not so oddly because it is an H1 blocker and I'm starting to suspect that part of my problems could be mast cell related.

Thanks Health girl. I'm sorry you have those symptoms too.
I might just try obtain zantac and see what happens. I've read alot about mast cell disease.

Hi Joanna

I've been under the care of the most amazing autonomic specialists in South London. It's been a really tough year or so with travelling backward and forwards for lots of tests (it's a 2 hour journey) but I've finally got a diagnosis, so it's been worth it. I've initially seen these doctors privately and then transferred into their NHS clinics as my private cover is limited. I'm not sure what the rules are on posting names on the boards but you're welcome to PM me.

Take care,
Sophie

I went through that last summer. It was terrifying. I had the sensation that I couldn't get a deep breath, which made it impossible to run or exercise. This in turn, caused the other auto symptoms to increase.

After going to many docs, I finally saw one who said possibly silent reflux. I am on protonix 40 mg per day and I am very careful about what I eat. I have read that silent reflux can damage the vagus nerve, which causes these symptoms. It only takes a tiny amount of acid to cause silent reflux.

I am so much better now, but still have to be very careful about my day. I only drink water (try to get high alkaline water--if you can't a small amount of baking soda can be added to normal water). One half cup of coffee in the morning and that's it. Zero chocolate. Occasional red meat, mostly chicken, fish, and green vegetables.

I still get episodes of fluttering heart, constant burping, and dizziness---severe chest pain. But it is rarely and when I've eaten stuff not on the list, especially chocolate.

I am so sorry you are experiencing this. I thought I was going to die last summer and no one would know why.

I take magnesium, b12, vit. d, protonix, and drink coconut water every day---right after meals.

If you do indeed have silent reflux, it will take at least a month for your symptoms to get better----even when following the strict diet and taking meds. But it does get better.

Thanks Sophie, it would be great to chat with you. I will pm you.

Hi Teachersmom, this is exactly what is happening - I feel like I can't get enough breath and have to concentrate on expanding my lungs enough to get oxygen in. It's a real effort. I also got an episode of severe severe panic out of nowhere when I was eating dinner and had to work real hard to calm myself. It was without question a physiological response not emotional anxiety. It came on not long after the breathing and heavy heart feeling came on. It's so frightening. My upper digestion is doing something odd as well as I have alot of strange discomfort.

It feels so horrendous that I can't believe this is silent reflux. But I would believe this is damage to the vagus nerve. I've read this can cause a whole load of full body symptoms including heart rhythm. I don't know how they accurately diagnose reflux. Did you have a specific test to help diagnose the reflux? I'm having an endoscopy in two weeks buy I believe from past experience it won't show anything.

Today I had a really good day health wise so did a lot of exercise swimming with my son in the morning . By afternoon the heart/breathing /weakness issues became really severe and are going on now. They'd gone away so I feel the exercise may have triggered it again. I'm too afraid to sleep. I can't slow it down enough to actually fall asleep. I wondered whether it was exercise or the fact I had a large latte after the swimming. I do drink caffeine but feel that I should stop that with all this. I also eat lots of chocolate. My diet hasn't been great recently as I'm often too exhausted or have no appetite. I desperately want to know what I'm dealing with so I know what dietary changes to make. I've drank lots of caffeine before and been fine.

It's really comforting to know others have experienced this. Although it's awful and I wouldn't wish this on anyone. Thank you for your message, it's a real comfort - and hopeful

I know that at least one of the PM docs here who handles the full body neuropathy crowd and will take them off of caffeine. I'm not ready to give up my morning Americano yet....

I have the same scary breathing stuff too. I still don't understand it. I have to take deep breaths but I can't get enough oxygen in. At least it doesn't scare me anymore because I've been at this 3 years now.

My heart truly goes out to you. Yes, yes, yes. This is exactly how my whole summer went. I kept thinking that it can't just be reflux. None of my tests results showed reflux, except my ent said my larynx was inflamed. He's the one who suggested it. But then said, "It's hard to treat," and left me on my own. So, after researching a lot, I have found many, many people with very similar symptoms. It honestly brings me to tears to read your post. I was afraid to sleep also. I would wake up gasping for air. I propped the top of my bed up on 6 inch blocks.

I don't know about you, but I can remember symptoms of silent reflux for years, especially the drainage and cough at night. I just didn't realize that was what was going on. I think that the severe breathing issues came from years of damage. The good news is that I have been on protonix since August and I feel much, much better. I can finally breathe and it's wonderful. Because of my ankle issue I have all but quit running. I have read that lots of talking (I'm a teacher) and high impact exercise can make the symptoms worse.

I think the actual symptoms would bring on anxiety attacks. I had 2 different trips to the ER and felt like a lunatic. Just getting dressed some days was a struggle. I have lost sooo much weight. Between SFN and not being able to run, it's like my body is just wasting away.

If you must drink coffee, allow yourself one cup a day. But absolutely get rid of chocolate. It is a huge no, no. My throat and chest start burning with in minutes of cheating.


As far as diagnosis, I think if you had a good gastro you could find out. But I do not. So, I have self diagnosed. Fortunately, he will still prescribe protonix. I cannot function without it.

Things you can do now that will help:

*cut out chocolate and coffee
*eat low fat
*cut out tomato products
*drink high pH water--Fiji--right after eating clears you of pepsin
*try taking nexium 30 minutes before eating and see if it helps (it will take a few days to notice)
*prop the top of your bed 4-6 inches---I slide off a lot
*don't exercise for 2 hours after eating
*don't lay down or recline for 2 hours after eating
*eat high alkaline foods
*drink aloe vera juice to heal your damaged insides
*avoid high impact exercise

It is a long process to get better. Praying you feel better soon.

Thanks for your tips Teachers mom. I have now cut out chocolate, I have one coffee a day and I cannot do any high impact exercise anymore so basically don't. I'm being investigated for POTS. I saw a great cardiologist thanks to a recommendation from Starburst. He said all my symptoms sound like this. I'm having further tests to confirm it.
I have left seeing the Gastro as like you I don't feel any I have seen understand this condition.