Postprandial Adrenergic syndrome

[JoannaCB]

Hi, I am new to the forum. I think I have the symptoms of PAS. I have been suffering for about 6 months with sudden episodes of dysregulated blood pressure and heart rate. My usual BP is normal to low. I follow a vegetarian diet with some fish. I am on omeprazole for acid reflux but no other medication, I am 65. The first episode was shortly after I came off Omeprazole cold turkey, but I have since restarted it and i still get the episodes. The episodes start suddenly, like a wam/bang sort of wave in my head followed by rising heart rate and blood pressure and usually severe shaking and sweaty hands. They last for about 45 mins and then I have smaller ones like aftershocks over the next 24/48 hrs. I have had loads of tests, all normal. I am not diabetic. I have noticed it seems to happen after food and more so after high carb foods. My hubbie who is T1D helped me try a libra monitor to see if there were any links. I have only had one episode since wearing the monitor and there seems to be no link so far. There is not much detail about PAS online. I presume I need an endocrinology referral, although I think it could also be connected to the autonomic nervous system? Once I had an episode after fasting, rather than after eating and wonder if it can relate to perceived (but untrue) low or high sugar levels. I am assuming also that my acute symptoms are not quite the same as those with reactive hypoglycaemia. They feel more like a panic attack. I know they are not anxiety driven, I do not suffer from anxiety, but I do feel an underlying physical nervousness since these episodes started. I also still have hot flushes, 15 years after the menopause. I also have a constant internal vibration since these episodes started. I am trialling eating regular small low carb meals and have temporally added chicken back into my diet. Any ideas/advice/links would be gratefully received. Thanks, Jo

 

[Rachox]

Hi @JoannaCB and welcome to the forum. We aren’t allowed to diagnose on the forum so all we can advise is to see your GP, rather than floundering trying to work out what is the matter yourself. Let us know how you get on.

 

[JoannaCB]

Hi, I don't think I was asking for a diagnosis, I asked for ideas/advice/links, all of which can be found on other people's posts that I read before joining today and that were helpful and interesting. I thought that was what the forum was for? Or is it that PAS is not closely related enough to Diabetes? That I would understand. I am indeed seeing my GP and have also been to A&E and have had lots of tests, all are normal, as I said in my post. My GP admits he has no idea, so he has referred me to a general specialist. With great respect I am not "floundering around "and I actually find that choice of wording patronising. I am a voluntary admin for a children's health charity. I am not a trained clinician, but I am able to read scientific papers and gain information from them. I want and need to resolve this issue as I am self employed and need to be fit to work. I also diagnosed Kawasaki Disease in my son, after 3 different GPs had failed to, forums helped me with this too. The lady on the diabetes helpline this morning was friendly and helpful, it is very sad that the forum appears not to be.

 

[Rachox]

I’m sorry I have upset you and came across as patronising, that wasn’t my intention. It’s just your problems sound complicated and in my view need a professional. I know it is frustrating waiting for referrals, I have had the same myself, but unless we can afford to go private we are stuck in the system having to wait.

 

[JoannaCB]

Thank you for your reply. Yes, you are correct, my problems are complicated, and yes I do need a specialist and yes I am willing to go privately to speed up the process. The problem is that I don't know what specialist I need and neither does my GP. That is what I was hoping for from the forum, a place to share my story and for others to say, yes, that sounds like me and I would suggest an endocrinologist or even no, that doesn't sound like PAS or reactive hypoglycaemia and maybe point me to another forum or source of information. I have looked online and can't see any forums for PAS, but have my non specialist hospital appointment next week so will keep my fingers crossed they can at least point me in the right direction. Jo

 

[Rachox]

I’ve just done a search of this forum, I haven’t read this thread completely but I wonder if it will help you at all. You may well have already seen it but here’s a link:

Another Idiopathic Postprandial Misfit

I'm posting this for a couple reasons. 1) There are a lot more of us out there than are known, because most people don't know they have it. Hopefully someone else will gain some info. 2) There is not enough information on the Internet, or anywhere about this condition. I am now diagnosed, but...

www.diabetes.co.uk

Just to note the original poster hasn’t visited the forum for a few years.

 

[JoannaCB]

Thank you. This was the thread I saw originally. I googled PPAS forums and it was the only one that popped up. It does contain some useful information, but as you say, is an old thread. I spent last night at A&E with another episode, they have given me betablockers to try to calm things down till I have the hospital appointment on Monday. I will let you know if it turns out to be anything linked to/parallel to diabetes.

 

[Lamont D]

Hi,
I have RH.
And there are many conditions that would give you the same symptoms.
Are you in the UK?
You need a referral whether private or NHS to a specialist that has treated post pandrial issues, symptoms.
And of course the diagnostic tests you should get from the specialist.
You did mention tests. Which other than blood panel tests have you had?

If you are getting symptoms after food, you need to discover which foods, wether carbs, protein, veg an you like me may need to have a look at some vegetable oils, palm oil, and you may have intolerance to certain foodstuff.
I'm intolerant to a lot of foodstuffs.
I hope this helps.

My best wishes.

 

[Jeanette molloy]

Hi,
I have RH.
And there are many conditions that would give you the same symptoms.
Are you in the UK?
You need a referral whether private or NHS to a specialist that has treated post pandrial issues, symptoms.
And of course the diagnostic tests you should get from the specialist.
You did mention tests. Which other than blood panel tests have you had?

If you are getting symptoms after food, you need to discover which foods, wether carbs, protein, veg an you like me may need to have a look at some vegetable oils, palm oil, and you may have intolerance to certain foodstuff.
I'm intolerant to a lot of foodstuffs.
I hope this helps.

My best wishes.

I don’t know when this was posted. Have you tried an elimination diet and see if symptoms improve? Then introduce foods gradually to see if the reactions start again. As the other poster suggested it could be food intolerance. If it’s additives it just doesn’t cine from food but chemicals in items you use on your body. For example gave cream and shower products. I use simple products and have to be careful of additives . Good luck

 

[Jeanette molloy]

I don’t know when this was posted. Have you tried an elimination diet and see if symptoms improve? Then introduce foods gradually to see if the reactions start again. As the other poster suggested it could be food intolerance. If it’s additives it just doesn’t cine from food but chemicals in items you use on your body. For example gave cream and shower products. I use simple products and have to be careful of additives . Good luck

You can come off Omeprazol as it’s non addictive but there’s a chance the original digestive problems will reoccur

 

[Melgar]

I came off the proton pump inhibitor Omeprazol after being prescribed it for peptic ulcers and GERD back in 2000. I am NOT suggesting you come off it as I am not a Dr. I am just giving you my experience. I came off it as i didn't like the side effects. What I did was find out what foods triggered my GERD and simply stopped eating them. But please speak to your Dr first. I hope you get some answers. Hugs Mel.

 

[Lamont D]

I don’t know when this was posted. Have you tried an elimination diet and see if symptoms improve? Then introduce foods gradually to see if the reactions start again. As the other poster suggested it could be food intolerance. If it’s additives it just doesn’t cine from food but chemicals in items you use on your body. For example gave cream and shower products. I use simple products and have to be careful of additives . Good luck

Hi.
I was diagnosed with RH in 2012/13 because of the number of tests I had to go through to get that diagnosis.
From that first test and my specialist endocrinologist advising me to lower my carbs and sugars intake. He gave me the standard NHS food diary. Along with my glucometer and plenty of testing strips. Along with researching and reading extensively about how, why, how to treat and of course the best food options for me.
I religiously kept my food diary testing pre meal, post two hours as well as fasting. Trial and error, even foods I didn't like. This I have since done and still add to it if I try new foods or combination of.
I cook everything fresh.
And I stick to my diet, designed by me and through my experience of my food experimentation.
My intolerance to lactose had been with me all my life.
My intolerance to carbs has been with me for I don't know how long. Probably from my forties, in the nineties.
I have to be so careful.

The numbers reading the RH threads is quite large for a rare condition. And I feel that some T2 & RH symptoms are part of becoming T2. Some not all. They are quite similar.

Best wishes.