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Antidepressants - I haven't tried them but they are on my list from the cardio.

I have similar spiking BP but low HR. I am still trying to get it under control too.

I have tried Fludrocortosne which should increase BP but seemed to calm my system down.

Hope this helps.

I have just had tests and been found to have antibodies to dairy. Does this indicate an allergy?

So have been diary free for 3 weeks and not noticed any improvement other than I have stopped getting the sudden very fast HR's - a bit like an svt - which i would get daily, sometimes a few times a day.

-could this have been the result of a reaction to diary?

Second - I was tested for mast cell and had a low score of 6. Is this how they test for it? Surely you need to be exposed to something that triggers the response.

And what things are the most common in pots to set of a mast cell response and what are the most common symptoms?

Thank you.

Thanks,

I wrote this as I hoped it could be of help to anyone else with chest pain.

Alex - I have had the same response as you when i have suggested that this might be my problem. This doctor suggested it to me along with being very happy for me to access the tests transfer through the nhs. When I researched this cardio his specialism is chest pain - so presumably he has dealt with this problem many times - and he was spot on in his understanding of Pots.

Still wondering if there is anyone else on here who has had this diagnosis and treatment.

Hi,

I have seen him and am about to go into national hospital for further tests.

I initially had 2 days of autonomic tests then a follow up appointment where i had as 30 minute consultation with him. Then their was along wait for the inpatient appointment. 14months. This is a second opinion as i requested to see him through my Gp in the north of England.

PM me if you want more info.

Hope your appointment comes through soon.

Hi,

I haven't posted for a while - i have been really well since a long summer holiday - but whether its the snow or just the cycle of POTs i have suddenly got worse.

Last week i went to A&E after hours of surging chest pain. I was told - very nicely that everything seemed normal. I asked could it be micro vascular angina as i have asked at least 4 Cardios before. No

So as i continued to feel ill with unbearable cheat pain i made a private appointment with a new Cardio this Monday.

He immediately said that Cardio vascular Angina, also known as cardio syndrome X is on a spectrum with post and that my chest pain is probably cause in the small capillaries through the erratic BP and the ensuing reduction of blood flow and hence chest pain.

Maybe this does not seem like rocket science but i have asked every doc I have seen including my POTs Prof - who just says - we just dont know - and no-one has been able to give an explanation for the chest pain. I have even had it diagnosis as neither cardio nor POTs - implying it is psychological. It is my worse symptom.

So I am sticking with this doc. He is happy to do tests to confirm it and to offer a series of medications that i have not tried before. I feel so relieved as the pain has become quite unbearable.

So although i dont feel very well i wantred to post this for all those others who have unexplained chest pain -this docter is definitely saying there is a cause and that just helps.

I am not saying that this is the cause for everyone but if you research it a bit it links straight back to all the other issues with pots.

Yes this is the third winter when i have felt lots worse. Not just a bit but completely back into severe chest pain and random surges. It's snowing here so - low pressure and chest pain.

Yes , I think my pooling is in abdomen and not legs. I lean forwards to but sitting also helps. I think quite a few people get this. like you i feel the strain in my chest as it drains.

ok

Ok - I saw matthais on the NHS as it was quicker than the private appointment - it was about 2 month. I had extensive tests first with a follow up appointment with matthias. He is clearly very busy and i am sure very well meaning but i think he has a lot of patients. So when i went to see him he did not have the results of my tests - they were missing and it was only because i checked with the nurse in charge that i saw him at all. He had me down as a return patient - so i only got 20 minutes. However he covered a lot of stuff in that time but also questioned me about what my husband did etc

I decided to continue seeing my pots doc here while waiting on a list to be seen in London. As i said i am now due as an in patient in 3 weeks and i now understand my illness loads better and feel i will really press for the right tests. Most of my problems are to do with heart rate, BP and debilitating chest pain. I have as yet to meet a specialist in the north east who is a cardio and had good knowledge of pots and this is my hope in London.

Dont know if this helps - he certainly should have associates who will know about pots and Lymes. I have been assured by his secretary that he has a whole team around him.

PM Diamondcut - I think that her user name - she has seen him privately as well as quite a few other doctors and her problems are more neuro.

Hope this helps.

Diamond Cut has a lot of info on doctors around central England.

Im in Northern England but have a second opinion for a 5 day in patient stay in London with prof Mathias. Took 14 months to get.

It depends on what your particular problems are where you go. What are your symptoms?

Yes Chest pain

Hi,

I have just posted 2 posts about the same issue. I am lying on settee with hot water bottle on my chest.

My docs can give me no explanation and i too find it debilitating.

Initially fludrocortisone worked.

this summer i started to swim seriously again and since then have been in chest pain remission even if not full posts remission. However i have had full tests so everyone feels confident my hesrt is sound.

Let me know if you find anything and i hope it gets better for you.

Would the ejection faction percentage give an indication of this remodeling.

Or how do you know if this is happening?

I know my % went down from about 70%-55%. Still looking for a reason for chest pain but also i have sinus rhythm tachy's that last for seconds but produce hours of chest pain?

Is this a new finding?

I have had my first remission and been 50% better for 3 months since starting to swim a mile three times a week. My enduring chest pain finally improved. However i am going through a bad patch again and am never sure if i should exercise while having chest pain. This is because i still do not know why i have this chronic chest pain problem.

Because it is chest pain i am a bit nervous about exerting myself but maybe that is the opposite of what would help.

Anyone have any suggestions?

hi Kitt,

you are not alone.

I have this - I wake several times a night with a flush, feeling unwell, sometimes like I have restless leg syndrome all over my body, sometimes just not quite right, then i go to the loo - moving sometimes can throw the feeling off.

I have seen a sleep doctor who think POTS is innocuous and that this is indigestion.

I think the reason for it changes - like the symptoms of POTS. It's a pain but until pots is better understood not sure any doctor will have a solution.

Lots of good advise here though.

Thank,

Yes i have been through the menopause so dont think it is that now.

I think it could be a slow hr that causes it - but dont know how i prove this as i wake when i flush and dfinitely have an increased hr.

I will try my blood sugar- does anyone know what the normal levels are - the monitor i have does not give out this info.

Also wonder if it is a MCA as flushing is a big part of that but not sure why it is happening randomly during the night without obvious triggers.

Hi,

Haven't been on for ages as i have been feeling so much better after a long holiday and I feel guilty about that as this site has been my absolute support and I want other to know you can get better or a bit better and i will post about it soon. But for now - exercise and relaxation have been the only thing that could have brought this relief and am now off the fludrocortisone too.

My problem now is my pots seems worse at night in bed. I wake continuously with hot flushes and probably this causes some tachycardia. If I am lucky I go back off until it happens again, but i lose a lot of sleep. It leaves me feeling off all day just when the day time pots symptoms are lots better.

Has anyone found anything that helps.

Thanks

Yes there seems to be no understanding for what i call felling "ill". I just feel ill ! and like you it is chest pain and a sense of a core instability like my body is not functioning properly and misfiring on two cylinders. And no one takes it seriously because it is so ill defined. I too often wonder if this is what other suffer. And i wonder about mast cell activation / allergy / gluten intolerance. Something throws my system out.

I can only think it is caused by vasoconstiction. I am trying beetroot juice - lowers blood pressure and vasodilates.

Yes, I have had a big problem. Is it also to do with eds? And can you tell me what Invisalign is?

Sorry you are going through this - can you check out what vitamins might help.

OK

I have just had 4 week of what feel like a remission - I still have pots but did not feel ill at all. Then today the chest pain returned so am taking it easy and hoping it just a blip.

I can only put this first ever good spell down to a holiday when I started to swim again everyday. So exercise! If you can.

Thanks so much Alex and Tuesday.

I dont panic anymore - but it leaves me shaky and with chest pain.

Can't take bb as i also have very slow hr often.

I see the doc next week and hope to discuss this in some more detail.

Will let you know.

Finally a monitor picked up a few episodes of hr 200bpm but was told my heart was in sinus rhythm so it was ok. It has been happening for 18mths and until now nobody believed me.

When this happens it lasts 30 secs-3mins and i have bad chest pain or arm pain and bp seems to go up to 145/100 say.

Just wondering if this happens to anyone else - ie is it a pots related problem or is it a cardio problem. or is it really not a problem at all?

Today it happened between lengths when i was swimming and means i have to be really careful - if i let my hr go too high 140+ then it can happen and it really knocks me out a bit.

Any advise/suggestions?

Hi,

I'm on holiday finally and it's hot and my bp keeps dropping to 100/58 say - which is really low for me and making me dizzy.

I only take half a tablet of Fludrocortisone and wondered if you can take the two drugs together. Thought it might help.

Any Advise?

Thanks Issie/ Corina - You can see I am watching the responses as this has been such an issue for me. It has all been really helpful.

Would anyone suggest a beta blocker - I always assume the heart goes fast to compensate so I have worried it is not good to stop this.

What do you think?

Thanks Puppylove - It has taken 14 months to dare to do it but I feel empowered by it. It's probably taken this long to get a grip on all the pots symptoms and how they hang together.

Katybug - Yes I have been doing meditation but also saw a psychologist and followed her instruction of moving eye and physical focus from one side to the other by tapping alternative thighs with left and right hand. I am not afraid of flying - this has happened twice before take off - but I am anxious about the high tachys.

Yogini - I always lay down as soon as I can but don't want the stress of trying to persuade the staff to let me lie during take off - I assumed they would not let you.

Thanks for replies - I am feeling stronger about flying on wed.