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Yes, Doesn't happen so much now but was often felt quite desperately ill when i got hungry. Often have to get up in the night to eat. read somewhere that it is to do with adrenaline release dropping the sugar levels. Not sure if i have got that quite right but when i read it i realised it really is a part of the pots.

If it's any consolation this symptom has gone now foe me - infact sometimes i feel better when i don't eat.

My doctor told me to carry food so it is a well recognised symptom.

Hope this helps - always carry food.

Thanks, i dont know much about mast cells - will look it up. I did not feel panicy just very fast heart.

Thing is i am due one for my neck in London and feel a bit worried about this now as i had taken some valium but only 2.5mg - not alot - but it had no effect.

Issie - meant to say - took a deep intake of breathe over your experience with the blanket - that made me feel claustophobic.

Thanks for your responses - i can usually control any anxiety and i was quite happy to go back in each time and try again so it is reassuring to know you have odd responses too.

Macks mum - Can you tell me what anaphylaxis actually means in instances like this. i understand it in relation to stings but i have often had this response - eg on an airplane before take off but after it had pressurized really quickly ( because it was late) I get rapid heart rate and go into shocK afterward ( i shake and shiver) This happened in between the scans.

Goodness there is a lot to understand with this illness.

Thanks for your help.

Hi Lieze,

I always carry a shooting stick with a rubber end - i no longer feel embarrassed about sitting wherever I am.

Hi,

I had a MRI scan for ongoing pain in lumbar region yesterday evening. I was not expecting a problem but as soon as it started my heart rate shot up. We tried again and i managed to breathe through it but had to stop the last test as my breathing was going haywire - i think because i was getting very stressed by the fast heart rate. I couldn't understand it.

I had read here that it was no problem for people with pots and i was not expecting a problem. I had taken 2.5mg valium as i have not been very well for a few days and just to make sure i was calm.

I do from time to time have adrenaline surges and i think once a surge is set off it takes its own course but i do normally manage them. i am not a nervy person and i know how to do relaxation breathing to bring my heart rate down.

It has really upset me as it has made me feel a bit mad. I did not even mind being in the tunnel.

Is there any technical reason why this happened?

Thanks Serbo,

Can you tell me what an EP is. Is it Endocrine....?

When i get get chest pain it can travel down my arm and sometimes it is only in my arm.

Need to do some research on EDS as it has only just been suggested by new doc but i knew i have always been hypermobile - not sure if they are same thing.

Did you try any meds for the tachy before the ablation?

Thanks,

Bristol's a bit far for me but son in Oxford - who is the doctor there?

On a bad day i could not travel alone so i don't think i could change trains.

Has anyone seen anyone in Newcastle.

Should a ANS doctor be able to deal with the heart issues - i think i have svts and bracycardia so medication is bit difficult. Pinolol has been suggested but am quite nervous about new medication.

Hi

Did you have a lot of problems before the ablation?Did a fast heart rate set the pots of - thats what happens to me. It seems to drive the pots.

Why did you go to London?

Are you happy that the pain is muscular - i think you are the best person to know but why would pots cause muscular pain.

i suppose i get chest pain when i stand and my heart rate increases so i think it is like an angina type pain. Maybe microvascular. But as yet have not really had a chance to work this out with a cardio-which is my next step.

I am really interested in the ablation if you care to tell me more.

Hi,

Yes i did have a lying down stress test in London and felt fine at the time. Don't know results as they forgot to put them in file when i saw doc. Hey-ho.

My doc said a proper stress test would make me feel too ill.

I think i am having SVT's but i don't know why they make me feel ill for days.

Have just posted to see if anyone can recommend a pots cardio in the north or even London. Maybe you know of one.

Thanks - had a duff day feeling ill and no one answered my post about feeling ill after walking.

Hi,

Can anyone recommend a cardiologist who has experience with POTs either in the north of England or in London.

Is there a cardio connected with Prof Mathias or do people who see him see a cardio seperately?

Thanks for any info.

Hi,

Have just started a post today that explains how it happens.

Basically just standing up will bring on chest pain , often like dragging downwards or constriction or pressure. This will go on until i sit or lie down. It does not usually come on when sitting. Bur it stops me doing anything.

I think it is worst if i have had a sudden tachycardia ( often only know this has happened by checking watch) Then the cheat pain eases with sitting but takes hours to go away. Today i took half a valium to ease it.

The thing is my heart rate is not that high normally. When i was out walking yesterday (and have only managed this 4 times in a year) hr was only between 85-95 but the chest pain was there and this is what stops me.

Perhaps i need to see a cardio again- am waiting to be admitted in London for tests but not even sure my tt would class me as pots these days and yet i dont seem much better.

Is this very different to what you experience - it has always been my worse symptom.

This has happened a few times now.

I have been feeling really well and yesterday actually managed to walk round a park with a few rests. Had a bit of chest pain but got better and kept going.

Today the chest pain started this morning while out in car - had to pass the driving over. Went light headed and felt really uncomfortable like i do when i think i have too much adrenaline - although heart rate not too high. Sometime during this period my HR monitor recorded hr of 215 so i realise this will have made me feel bad and i do not know quite when this happened possibly at the beginning. When this happens it usually lies me low for 12 hours at least - i do not know why.

Now my prof says if i use too much energy from my reserves i will pay for it.

But why a day later?

The same thing happen a week ago - walked quite a bit then next day - ill with chest pain for 4 days.

Now i am wondering if this is microvascular spasm - the exertion causes spasm in the smaller blood vessels.

Or - the exertion (only walking) causes plaque or debris from blood vessels to be released and these cause spasm.

Or - there are small clots caused by something causing pain and activated by activity.

The thing is while i was walking my heart rate was only around 85-95 apart from a hill.

So in a way it is as though i am really getting better but i still can't move around because of the chest pain.

Even starting to think i probably would not officially have pots some days- great but still so many debilitating symptoms.

Is a spike in heart rate - like i described - indicative of an SVT?

Really appreciate any help on this. Thanks

Hi Serbo,

Thanks for that.

I feel fairly sure for me the chest pain on exertion is not gastric. You sort of know when something seems to fit and the microvasular spasm theory fits for me. Would be really interested to know how you get on.

Best of luck

Hi,

I am not on any meds.

I was scared off after taking 1.25mg bisopromol for 2 weeks and then finding it took 2 weeks and lots of pain and adrenaline rushes to come off it for the TT.

Have started to take 2mg valium if i have an adrenaline attack.

I have a string of symptoms which are intermittent but which i mostly manage so am not sure which to take tablets for.

HI Serbo,

That's really interesting - would love to find out what causes the chest pain. Today went for a walk - have only managed this 4 times in a year and yet that is because of the chest pain not the tachycardia.

Which Professor is doing the study? I am in UK to.

Thanks Issie,

yes the problem is the progesterone. The doctor ok-ed using it for just 2 weeks in every 8 as i had a bad time with it. But i did not know i had pots then so if i go back on it i will have to suffer the progesterone again. I just wonder if it will make the pots generally better and also more specifically my muscle tone down below, which is causing me a bit of a problem.

This is all new to me as a new doctor has just suggested that the EDS is part of the POTS problem.

Thanks for your help. You have been through a lot yourself.

Hi Serbo,

you did not finish your message - i was interested in the article you were referring to.(and anything else you knoW)

I have wondered about microvascular angina or Syndrome X. i just found this from a web page:

In some women with CSX, there is evidence of abnormalities of the autonomic nervous system (i.e., of dysautonomia) - specifically in the case of CSX, an increase in sympathetic tone (i.e., adrenaline levels) has sometimes been seen. Furthermore, CSX has been associated with otherdysautonomia syndromes, such as fibromyalgia and inappropriate sinus tachycardia.

I asked my doctor about it but was fobbed off. I have no doubt this is what i have. The chest pain is worse than anything else and is often there even when my heart rate is not too bad. When i took calcuim channel blockers it made the chest pain better but i was less able to walk.

Has anyone had this diagnosis recently?

Hi,

Yes i get internal tremors a lot. They are not painful and tend to happen if i have done too much.

But they are most pronounced in bed. Sometimes i wake up and feel like my body is literally bouncing in the bed. At first i thought it was my heart going fast and i was sure you would be able to see the vibrations - but like everyone else says - you can't really see anything.

You are not alone and it definitely happens when you are tired.

I also often feel weak which is seperate to feeling tired. My legs want to give way even though my heart rate is not particularily high.

Hope this helps and you feel better soon.

Hi Issie, you seem to know alot about eds and you seem to be managing it really well. Have you ever tried HRT to increase your muscle tone. Has this ever been suggested?

I am thinking about going back on it to see if it improves my symptoms. It is suspected i have EDS111 and hyperpots. Have not found any meds yet that really work but my symptoms got worse after i came off HRT before i knew i had POTS.

I would be really interested to know if you have any info.

Thank you.

Hi,

The worst part is-

Chest pain

Adrenal surges

Bad nights

It can change from day to day but the chest pain has always been the worst.

Hi,

Yes i too get all these symptoms and find it scary. Have found valium stops the hr going so high so that i can avoid going to hospital. But i only feel sure of this having been in about a dozen times over the last year and there has never been anything wrong in cardiac terms. So maybe its best to get it checked out if your heart is going quite high and with all the pain.

Hi Ramakentesh,

How do you run with POTS? Are you in remission? What happens with your heart rate?

I ask because i swam before the pots - even in my 50's i could manage half an hour in the fast lane but my doctor tol me to only do single lengths and not let my heart go over 120.

I have hyper pots and exertion gives me chest pain and sometimes jumps in hr.

Well done- it's great to hear you're keeping healthy.

I used to have terrible pains in the back of my thighs. This was before i knew i had POTS. It was a bit like burning and aching. Sometimes it happened when i was driving and i would twist and turn and change position. At the time i was worried it was a clot. Since the post has been full blown the pain has gone.

Hope this helps.

I have a permanent stiff neck and ringing in that ear. i mentioned it to Dr Mathias when i saw him for the first time last week and he is going to do a brain scan. Will post what happens. up until now i had mentioned this quite a few times to other doctors and they see to ignore it. but i am going to trust my gut feeelings and feel fairly sure it is definitely connected to my symptoms. Also if I twist it sends my heart rate up.

There was a post a few weeks ago with a link to a video of a docter giving a talk about the importance of these neck problems in pots. If you search for neck pain you should find it. if you can't email me and i will go back and find it for you.

All the best.

Hi Steven,

Sorry to hear how frustrated you are. I am in the same boat - still trying to get anyone to deal with the adrenaline rushes and trying different things. A year on from my diagnosis i have lots of good days (swimming's good) but like you am into my third day of adrenal rushes and poised over a valium having already taken half a beta blocker and wondering why doctors don't seem to get how awful this experience is. My cardiologist who has only seen one other POTS patient suggested Pinodolol but i have not tried it yet.

Some days it is just HR which goes high and i can cope with that - i don't feel ill just frustrated because i want to get on. But the rushes are something else.

Your post and the responses has helped me too so thank you.