andybonse

Hi Sarah,

thanks! I cant wait to try it as I feel it will make a BIG diference, im untreated at the moment.

what does Mestinon do for thermo? I feel asif I dont sweat correctly, or not enough.

If your not eating enough this happens,

You need to eat 500 calories more than maintenance to build muscle

Hello,

When I'm cold and get goose bumps and stand up my heart rate hardly goes up compared to when im warm, I guess this is due to the vasoconstriction from the cold?

So, if Midodrine has the same effect, it could help me out a great deal? My Doc is going to try me on it after my autonomic testing.

If this is the case, it should help with hotter conditions and stop vasodilation, right?

hello,

I was stood up and extended my arm and rested it on a lamp lol, my bp was 84/67 which is very abnormal for me, so I moved my arm and then tried again and it was 120/70,

I guess the position of your arm like the height of it and not if at heart level can cause wrong readings?

Whats the best way to measure standing BP?

Ah that might be all I need hopefully .

I feel for you!

My worse symptoms is my POTS and hate the heat,

I believe once my treatment starts for pots and mast cell properly I will be able to do a lot more. All my friends are asking me to go out all the time and dont understand im ill.

My brothers think its in my head all the time, I just give up trying to convince them, my brothers also mark easy on skin and get chest rash when its cold so I suspect they have it too!

Since im on zyrtec and zantac already, I wonder if they will add anything else, just a little scared if I have to have bone marrow test, Ive heard it really hurts..though im good with pain and suffering anyways.

Thanks guys,

@christyd - I am taking 10mg zyrtec and 150mg twice a day, I am not taking zyrtec twice a day as i am self treating until I get to see the specialist. I get the pain in my arm and back also, its angina really. How is your son on treatment?

What is his life like, as hes near my age Its so hard for me as my friends go out drinking etc meeting girls, how will i ever meet anyone! forever alone lol.

@ChristyD, when he has the chest pain does he have a very fast heart rate and his heart beating hard? Mine does its horrible, when I sit down it slows a bit and the pain goes and I have to wait it out. I've just started taking cetirizine and ranitidine, what does your son take?

@Davecom, thanks. I am sure with correct treatments I can get a lot more 'normal', especially with midodrine which I will probably be getting after my autonomic testing.

I cant believe I may have Ethlers Danlos type 3, Im hardly bendy, but can put my arms behind my back and do the reverse prayer lol. No one in my family has any of this, weird.

Thanks,

The Neuro said he does not think I have neuropathy, so thats good I guess.

I will keep all progress on here .

Thanks! .

It's funny as all docs and cardiologists tell me its not angina and its not my heart. I know full well, its some sort of cardiac pain, now I find out I most likely have mast cell disease it makes absoulte sense its my heart just no one is educated in the medical field to realise it!!

We have to find the most specialist doctors with this crap!

The neuro today said im 22 and shouldnt have to be dealing with this at such a young age and hopes to get me treated and better!

I'm home now, when we got there my heart was going so fast and beating VERY hard, the angina came on and I was terrified. Ive always walked everywhere, we had to get wheel chair from train station to hospital and back was crazy. We got to the docs office and he had amazing aircon, I cooled down and my heart came back down phew.

I think this might of been a mast cell attack since he thinks i have it and heat triggered it.

I am now home, very tired and exhausted.

Next time we go we are going to use wheel chair all the way to ensure that doesnt happen again.

Was a very strange feeling, everyone staring in at me in the wheelchair lol, you dont realise how other people see the world.

I am taking OTC H1 and H2 histamine blockers to try keep mast cell symptoms at bay until I see a specialist.

Hi all,

I went to London to see Professor Mathias and had to use a wheel chair when we got there as I had tachycardia and chest pain and was triggered by the heat. ughh.

So diagnosis?

POTS

Possible ehlers danlos type 3 which surprised me

Mast cell

I found out why I may get chest pain here:

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?action=print;num=1309115504

I need to go back for testing.

Well...once neuropathy starts, there is not much we can do to stop it - worrying about it might actually make it worse as chronic stress, anxiety, and worry cause the release of substances that increase inflammation throughout the body thereby increasing symptoms. I think that the more information we are able to obtain about our disease, the better we understand where our symptoms are coming from - this reduces anxiety and helps us to keep on keeping on!

I guess it depends on the cause, if treatable causes are found it could be stopped and reversed. Obviously thats the best case scenario and doesn't come a long every day!

CT Angiogram is the most effective non-invasive way to check for blockages, after that is the gold standard angiogram.

I'd opt for CT, get your cardiologist to explain to them and they may listen next time.

ACETYL-L-CARNITINE

Try R-Lipoic Acid, it is better absorbed and a lot more potent than alpha, try 100mg.

Vitamin B12

Fish Oil for anti inflammitorary properties.

There are plenty more you could probably research into however these are the basics which have been studied the most imo.

I plan to try these once I reach my confirmed diagnosis.

Lately when standing my heart rate has only gone up say 15-20 beats for a week say.

Tonight: sitting 120/66 hr 59 stood up still 5mins 127/77 hr 60.

I mean I dont get it a few weeks ago it was going to 110-120?!

I am seeing autonomic specialist this week what do I say? Oh I sometimes have pots but it goes for a week and then comes back!?!

Arghh it doesnt make any sense

Unless theres something causing neuropathy and my nerves heal then damage then heal?

I never feel right not like im supposed to

Hi guys,

About 2 years ago I had a weird feeling all over my face for about a month if I remember correctly maybe longer, as if someone with ice cold hands kept touching my face in different places with a finger! It was horrible but ignored it, it went away phew!

Now I get these feelings but on random parts of my body occasionally, I also started 6 months ago getting random muscle twitches.

I always wonder does it sound like MS?

Is this for autoimmune anti bodies?

It didn't start straight after surgery, I was still at school and moved, although I had ibs starting around then. Maybe I damaged my spine?

So many possibilities!

Thanks,

Another thing, when I am cold and stand up my hr doesn't rise much probs vasocontriction from cold, so maybe midodrine is a thing to bring up.

Hey guys,

So I have my appointment with Professor Mathias in London this week, at last someone who knows about all of this!

I just wanted to check with everyone to see if I have all the right questions ready!

Heres my symptoms list:

My POTS started around 17-18.

light headed for 10 secs when I first stand(I know can be benign but still put it down)

Heart rate rises when standing more than of a normal person

freezing hands

space out feeling and tired

odd cold quick second tingles on random places on my body - I had these all over my face only which drove me crazy for a few weeks about a year ago, these went now its just the random odd ones.

random muscle twitches now and again for 6 months

legs go purpler colour if I stand still for 10mins

short of breath sometimes

no energy feel like im always fighting to be up

heart rate is sensetive to movements and spikes fast

hate the heat!

chest pain when exercising up right

-----

I had a bike accident when I was 16 slammed my back had collar bone surgey, possible cause?

Chest infection cause?

tests:

Auto immune tests?

auto anti body tests?

neuropathy tests?

Thanks Dave,

Before exercising it was going up 40 beats.

I guess I will see how the future goes.

Are you in the US or?

Exercise should never be neglected in POTS, over 6 months you increase:

Heart left ventricle chamber - your heart fills and pumps more blood per beat, get very fit and this can be a massive difference

The heart walls get thicker - it can withstand higher blood pressures and pump more efficiently

New capillary veins and nerves grow to provide more oxygen to your body

blood volume increases by 20%

your lungs adapt to take in more air

more mitochondria develop giving you more energy

Theses are just a few benefits, which will benefit any pots person I believe. I was sedentary for years since I got my car and my pots developed and got worse due to office job also. I would never dream of not exercising again how I neglected my heart!

Thanks, I do actually, I'm 6ft1 and thin so I guess thats me in there ha.

Thanks for that info cleared up a concern on mine

I just did a standing test,

Sat down was 120/60 hr 66

Stood up, after 10 mins it was 110/63 hr 90

My legs were slowly getting purpler as if they had blood been pulled into them and also my chest felt like not enough blood!

So really its not classed as orthostatic hypotension, my bodys adjusting normally when I stand its asif some of the constriction isnt working so it drops.

Meh, guess Midodrine will sort that maybe!

Thanks,

There's so many different things its mind boggling.

I have an appointment with a top autonomic neurologist this week, hope he can help.