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Thanks Katie,

Yes they were prescribed and the doctor was annoyed that i was not sure about taking them. However when i was not well last summer i did take them sometimes for a few weeks and they did seem to help the chest pain. At the time i was not really having adrenaline surges and they have clearly just exacerbated this.

i only took one. Have been back to doc but still waiting for reply. Don't know how to control surges which have been happening daily for 2 weeks and am now very nervous of having a bad reaction. Now taking valium and last night i had a BBlocker to try an stop a 5 hour surge and chest pressure. Feeling quite desperate.

Thanks

Have been getting worse over the last 2 weeks with frequent adrenaline surges and have for the first time since dx a year ago not been able to leave house, drive etc.

Battling with the medical profession to try and get an appointment as am not on any medication besides valium for episodes.

It got so bad i just thought i would try a calcium channel blocker - hadn't had one for a few months. Within 20 mins it had set off an adrenaline rush which went on and on for hours as it was a time release tablet.

Today my hr suddenly jumped to 174 - i couldn't feel it but my monitor registered it. i was on phone, ignored it and then suddenly had that mental draining feeling - spaced and light heated and then the sudden adrenal rush and rapid hr - well actually only about 130 but it is adrenal driven and i'm are lying on the floor and it goes on for a few minutes and i feel very unwell.

What i want to know is - does anyone else get this driven by what might be an svt or brief rapid episode?

Thanks.

Hi,

I experience exactly what you do. It took me a while to figure it out. It is definitely the POTS. i find it happens if i have done too much.

I have had a 24 hour urine test which showed nothing but another doctor said it was the wrong test. Like a lot of our tests nothing is found and it leads doctors to dismiss the experience. But be reassured it is the nervous system kicking off. I would be very careful about letting anyone say it is anxiety.

It is difficult to self soothe but i deep breathe into my stomach if that helps. And mine was caught on an ambulance monitor so finally i was believed.

You sound like you are managing them really well - well done.

Hi,

This occupies me alot trying to work this out. For me it is like a panic attack but i don't think i am panicing.

The adrenaline puts you into an alert state so it is very hard to self soothe.

I can feel the adrenaline rising in my chest, i feel like i will explode. i breathe deeply into my stomach to try and keep calm and just watch as my heart rate increases. i can feel it subside.

Afterwards i shiver and feel cold.

I have thought endlessly about whether i make this happen or whether it is a real adrenal rush caused by disruption in my system.

I was in bed the other night and i suddenly thought that i felt ill - then my husband said he could feel my heart going and sure enough i was having an adrenaline rush. I had been almost asleep - but we had been out to eat and i had had some food i would not normally eat. I don't think this was a panic attack.

Generally if i get one surge i get 4. and then it is over.

Just try and breathe through it and find what your pattern is and your triggers.

i can feel my adrenaline go over the doorbell ringing and i am really a robust person.

Hope this helps

Hi,

Rich, in a way i am same - don't really get dizzy just chest compression and sob.

I get red streaks up the inner side of my knee on one side and have for years but didn't know it was this but otherwise i think i pool in my stomach and yet with hyper pot - low flow- i don't think this should happen.

After a ttt in London which was fine the following day I was so dizzy i vomited when i finally stood up. It lasted all day and i understood what some others go through - dani - it must be awful.

I also got this after a virus.

Otherwise light headed but i think they are quite different.

Standing or walking causes chest pain. If feeling quite good and ignore it i can be ill for a while. This happens even when not much tachycardia.

Adrenal rushes - getting more frequent and really unpleasant.

If tachycardia bad standing up will cause causing trembling legs.

Night tremors, restless legs, stiff neck and ring in right ear - but can live with these.

My problem really is chest pain which is why i have been following posts on endothelium dysfunction / microvascular angina etc.

You put a post for a simple endothelium test and i can't find it now - would you repost.

Enjoying reading your posts - it's all really helpful.

Hi,

I was prescribed it - i'm in England - and in theory it seems perfect but it gave me worse chest pain.

It was the first medication i tried and i attempted it 4 times but never got past day 4 as the pain was continuous. As my worse symptom is chest pain and that was what i was trying to alleviate it did not work for me.

So depends what your initial symptoms are.

Best of luck

Anna,

The episodes always start of from exertion it's just they do not always go immediately on sitting and it they combine with adrenaline surges i feel like i have been kicked in the chest and really have to bed rest for sometime.

Have you been diagnosed with microvascular disease or it it solely as a result of the eds. or has eds caused microvascular angina.

Thanks.

i have found your post really helpful - it has given me enough to convince someone to prescribe the right medication. Are you seen only by your GP.

Thanks again

Do you know anything about Pindolol. it is a BB that's supposed to respond to adrenal output so if you have a slow as well as fast hr then it is perhaps safer?

i was prescribed it but by a cardio who was very helpful but only seen one other pots patient.

Bad reactions in the past make me nervous. But not yet found any medication.

Interested in anyones opinion.

Hi,

Thanks both.

Bren i do not really suffer with my stomach but i bought benadryl on friday and maybe should have tried it. lots say that works.

Like a lot of people i am really frightened once i am in that state to take something for the first time that could possibly make me feel even i% worse. But it is really reassurring that you experience the same when i am being told it is not pots. Not that i would wish it on anyone.

And the truth is i feel like i am going to die as my chest is so squeezed and sometimes feels like it will explode. And it burns.

Thanks again - can go back armed with more info - thats the intention.

I understand that ringing in the ears is pots related.(I have this) There were some earlier posts of by someone who had had it checked out but as usual could find nothing wrong. However don't let that put you ofyou should always get it checked.

Best of luck

Thanks Anna and Jule,

had not seen your replies but have posted a brief account of hospital exchange with doctors as it got so bad i did go in. Very grateful for any support or advise. I have so far had virtually no testing and i have been using a wheelchair for a year as all exertion causes chest pain. Had bad week last week with doctors but have finally got appointment in 10 days with cardio.

Certain i have something micro vascular as well/because of pots. also have possible hypermobility and backs of feet are dead.

I am so glad of this site.

thanks

Have just had another overnight stay in hospital - chest pain, tachycardia, bradycardia, feeling very unwell, shaking, v cold.

First doctor so glib and rude but when pressed had never heard of hyperpots. He also told me wearing a heart monitor was bad idea as was probably causing anxiety.

Second doc - cardio - very unfriendly but said my chest pain does not fit with micro vascular angina as it still is present when i lie down. it is brought on by exertion and goes into neck and arm and have sharp pains in the chest. But when it is bad it is still there when resting. This has gone on all week. always worse when exerting myself. Sharp pain followed by high rise.

He also said it did not fit into cardiac pain as ecg, vital etc all were normal and so it was not cardiac,

I held my ground with both doctors and said it was about time that they stopped saying there was nothing wrong because i did not fit into their boxes and listen to what are very real symptoms seriously affecting my life and it was about time they helped find solutions.

However i want to know what others would say are "typical" pots chest pains and if anyone else gets arm pain, sharp chest pain that can last for long periods, is always better lying down but does not necessarily go away. And the sharp pain can briefly increase the HR. This is on top of sudden jumps for a few seconds to over 200 and adrenal surges ( which are the worse)

Any help appreciated - i felt at a loss to answer his claims.

Hi,

have been following this post - lots of reading - very interesting in search for explanations.

I was told in hospital today my chest pain does not fit classic pots chest pain or microvasular chest pain as it was still present after i lay down. When it is bad and i have had surges to it doesn't get immediately better.

Any opinion - really upset by the glib arrogance.

Thanks,

have you actually taken anything that has made it better?

It is easing today but 3 days of solid chest pain was difficult. The cardio referral resulted in an appointment in 2 months time. I am having a difficult time with the NHS dealing with my problems. My Gp is going to phone and ask for a sooner appointment. Last time i went to A&E the cardio said he could do nothing because he had not hear of pots.

The sensitivity issue is interesting. when i looked it up it seemed to suggest that exposure to chemicals can cause it.? Do you know what else can do this. Or is it just a fact of POTS?

Hi,

I am really pleased you have had this much care over finding the right medication for you. You will gather from this website it can be very hit and miss.

Which hospital have you been in and who are you under?

Do you worry about the dependance on beta blockers. if you lower the hr with them it can be difficult to come of them. This really worries me.

Any info anyone?

Hi,

Feeling a bit bewildered.

Have always had chest pain as one of main symptoms but over the last few days have been getting sharp pain then very sudden surges in heart rate which seem adrenaline fuelled and leave me feeling shaky.

The pain is there even when i lie down. have been taking Valium to try and keep it in check and have also taken a beta blocker (Bisopromol) but this seemed to make it worse.

Have been given Visken by a cardio who had only seen one other pots patient but the pots doctor thought they might increase my heart too much(?) Just a bit scared of something making me worse or getting stuck on beta blockers as last time after 2 weeks on them it took 10 days and lots of pain to come off them (for the Ttest) and have not been back on them since.

Its just the sharp pain and the sudden tachycardia -anyone got any advise or have similar experience?

Toddm,

What do you mean by " burn from the lactic acid"

Am asking because i get awful chest pain that feels like burning - could it be lactic acid after too much activity?

Hi,

Sometimes i have found taking salts has had a rapid positive impact on the chest pain.

Like you i would love someone to explain the chest pain to me. Magnesium is good for the heart. I take a trace mineral tonic with magnesium etc. I get rushes that spike at about 150 and cause awful pain and are adrenaline led - i think. But the chest pain stays for days whether lying down or up.

You can get chest pain when heart is slow too - that is not comfortable either.

Hi,

Great info.

Have been holding out on blanket prescriptions until i believe the doctors know what they are trying to cure. A lot of what is said does not really address my experience of the symptoms. As my main symptom is always chest pain and still have not seen a cardio i will take this info with me.

Thanks

Hi,

R-you always sound so on top of understanding pots - to see you at a lost at it's randomness was unexpected.

I can't figure it out either - it does seem totally random. It leaves you feeling powerless to do anything to make the situation better.

A few weeks ago i went to see a GP who is a homeopath and specialise in nutrition. I do not really hold with homeopathy but anything that throws any light on the pots is welcome. Anyway she is about 85, still growing her own veg, driving, emailing and sharp as a button.

She gave me a lot of advise about diet and nutrition and supplements. About not using aluminium and micro waves etc

She also had a few theories which i will throw in and might have some truth to them.

She suggested that root filings (aside from the mercury filings) harbour germs and infections. When a tooth nerve is drilled out it is impossible to clean it properly and this can leave bacteria that can easily enter the body.

She suggested that there was infection or viruses in my body and particularly my heart which was causing all my chest pain. That these needed to be overcome through good diet and of course some homeopathic tablets.

Somehow this made more sense than any other theory i have heard. I found it a powerful enough experience that i have gone wheat, dairy, potato, free for 2 weeks.

As i said i do not find the theory behind homeopathy believable but one has to try whatever you can.

i am finding acupuncture has really helped my energy levels but it is not a cure - well not a quick one.

I can tell from all you research that you have turned this over and over and i have really appreciated the insights you have shared- it has really helped. So sorry you are feeling a bit despondent.

Hi Ramakantesh,

I couldn't open the link on your first message - could you post it again. Thanks.

Also if tumeric etc helps for normal flow is there something that helps increase NO for low flow - if this might be partially causing the problem?

Thanks

Goodness - really feel for you. You clearly have some form of dysautonomia - it does not really matter what they call it so long as someone starts to help find treatment for you. Good luck

Yes, I get really stressed about anything complicated now. I just can't cope with it. At work i am often quite focused and driven and then afterwards collapse with the stress and can be ill for days so i try and space out these days.

Even being with people i want to be with can set me of too much.

I think i am functioning quite normally until i start shaking or have a flare and realise it is only temporary. I feel very delicate when i am out in public.

Like you Alicia i considered myself really tough and resilient. But it is getting better. I remember going to the doctors and asking for him to give me a minute before i spoke because my adrenaline was flooding with the anxiety and stress of being out and fighting my corner again - and he is a good doctor.

You're not alone