[JoannaP79]

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?

[Healthgirl]

Originally Posted by JoannaP79

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.

[JoannaP79]

Originally Posted by Healthgirl

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.

[Starburst]

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

[teachermom]

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.

[JoannaP79]

Originally Posted by teachermom

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.

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

[JoannaP79]

Originally Posted by Starburst

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

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