miranda

I had a look online about this condition and was shocked to read smells can bring on symptoms - this has always happened to me , I would smell perfume or someone smoking and then my stomach would hurt & always made me ill.

What antihistamines do you take and what is sodium cromoglicate ?

lieze, its strange how it was in our stomach first , then went to our head and heart.

Thats really interesting Sarah I will be really interested to hear how you get on, because 99% of the time

I do not pass out, I have symptoms daily and have alot of pre syncope.

I would really like to know more about the mast cell thing,is there anywhere I could read about it ? Am I right its to do with histamine ?

Can you tell me what this drug is please ,

I am going to be reffered to prof mathias soon , I hear he is very good.

thanks I have got myself some benadryl to try, will keep an eye on blood pressure.

Hi everyone , I often have questions come up in my mind about my condition

and thought I would just put it out here instead of worry about it at night.

For 8 years I have suffered terrible dizziness

was told it was anxiety then it was Migraine *** vertigo.

Then I had some passing out episodes and couldnt go shopping without it happenening.

Then a year ago my neurologist discovered I had orthostatic hypotention and said the

episodes I have are NMH/vasovagal.

So now I am salting & watering myself and still on beta blockers.

I tried fluro pills and got headaches ,

I tried paxil pills and felt more shakey and nervous.

So I am still having episodes and dont leave the house much at all.

When I read about NMH/vasovagal it says the sufferer usually starts getting episodes in the teenage years and then it goes away and comes back later in life. This got me thinking about how I was as a teenager ( I am 42 years old now), I can remember lots of things that were not right and I will list them here ....

when I was 11 years old I remember going on a long train journey to see my grandparents and when my mother said to me "we are nearly there " I came over really excited and suddenly fell to the floor with severe stomach pain that made me sweat and dizzy.

This then became the norm for me ,

when I got a new boyfriend and felt nervous I would get griping stomach cramps that were so painful I would nearly pass out.

When on holiday in Turkey and it was hot I passed out.

I passed out a few times with this and then I got better when I got to 22 year old.

Had my first child at 25 and then I started getting odd episode of dizziness which calmed down again.

Had my second child at 29 then would feel shakey alot when out and about ,

I would have afternoon sleeps to cope.

Then when I was 34 years old, my world turned upside down with constant floaty headed dizziness

and fainting , when I was taken into hospital they said I was dangerously low in potassium

and was put on a drip.

So I am wondering

have I been suffering from dysautonomia all along ?

Hi does anyone know if I can take antihistamine with orthostatic hypotention ?

I used to take Benadryl but it can lower blood pressure.

Any ideas much appreciated.

I was diagnosed with vaso vagal (NMH) by the other neuro ,

but this one wonders if theres this other element to it.

Thanks Nowwhat

I will look into that, sounds interesting.

Has anyone watched the new presentation on you tube about Orthsotatic Intolerance ?

Its by the John Hopkins team and I found it really interesting.

Today I went to visit a new neuro , I have already been diagnosed with OI (NMH) .

Because emotions make me faint , He said that there is another condition called ?????????

that makes people faint and also feel paralised down one side of their body, and asked me do I feel I have this ?

My answer was no , I do not get numb. However then I remembered I have had episodes like this before (years ago). He said even though I dont feel I get them now I might have this ?

For the life of me, I cant remember the name he called it,

Any ideas please ?

Thanks for the replys , it's nice to know I am not alone with this.

My only regret is ,I did not catch a near syncope episode , because when this happens I am convinced my heart stops , so I have decided to get myself a small heart monitor to wear on my wrist and next time it happens I will record it.

Cany anyone advise me of a good monitor please ?

Thanks

Thanks all i was told was no abnormal rhythms were picked up.

So would this rule out brachy or tachy episodes ?

I often have a heart beat of 52 so dont understand why nothing showed.

Hi , I have been diagnosed with orthostatic hypotention by my neurologist.

I also take near fainting episodes when stressed and she said its my blood pressure dropping fast .

A few weeks ago I had to wear a montitor for a week , hoping to catch a very bad episode ,

however I ony caught some mild episodes .

But I felt the palpatations as normal.

Today I got the results and it was all normal, which I am delighted with , however it doesnt explain why I felt so bad at times.

So it seems although I get the drops in blood pressure , my heart copes well with it.

can anyone shed any light on what this result actually means for me please.

I am confused.

Good luck with your results. I handed mine back to the hospital Tuesday

and they told me to phone for the results in 2 - 3 weeks time, unless they phone me first.

My only regret is I did not get a faint on it.

Thanks for the replys , I dont know what type of event monitor I have but apparently it records all the time,

but if I press the button its just to highlight when I felt symptomatic.

I woke this morning and had unplugged my heart monitor in my sleep , I will have to let them know or they will think I died for a few hours , lol.

Today my husband took me to the busy sypermarket

where I managed to get 3 good episodes recorded, I didnt faint but had the pre syncopal feelings strongly,

it was when I was stuck in a crowd of people and I came over very dizzy and drunk feeling , breathless and palpatations - which made me feel like I might faint any moment.

So I think thats a good result , I just hope they will see it.

fingers crossed x

I am currently fitted with a cardiac heart monitor to hopefully catch my funny episodes .

The first night I rolled over in bed and accidently pressed the button

The next day I had a massive palpatation that felt like my heart stopped completely and I came over really breathless and dizzy.

Has anyone had this before ?

I am now hoping to catch my fainting episodes , but I only have until wednesday which is worrying.

woke this morning and still ill , doctors coming out to see me , will this ever end.

I have not taken my beta blocker for 2 days now ,

I have been on them for years since my fainting episodes with NMH/vasovagal.

I am amazed that since being off them , I have no Orthostatic Hypotention at all !

My blood pressure sits at around 110/70 when standing .

This is pretty amazing because I only managed 2 glasses of drink all day yesturday.

This leaves me with a problem ,

the propranalol helps me with the fainting I get when I leave the house ,

its stress related most the time although standing can trigger it.

Is there a beta blocker that doesnt lower blood pressure that I can try ?

sue , i can get it standing or sitting , think NMH does that. i cant handle hairdressers , always gets me there so now cut my own hair and wish i could have it done proper.

no temprature , just sickness and diarrhoea really bad which has almost stopped. but my stomach pain is the worst pain ever and i cant move , so laying in bed and typing with one hand.

i ate chicken from a food outlet and doctor says its classic food poisoning symptoms.

my heart is doing flitflops and skips all the time, but i am managing to sip gatorade

so thats an improvement.

thanks for you help

thanks might try that when hubby gets home, cant walk cos painful stomach.

i have not taken my beta blocker so my hearts going fast, i have oh & nmh ,

but today i have pots

laying heart 62

standing 98

or this the food poisoning at work.

I have been sick with a stomach pain for 12 hours and can not drink, doctor said he will give me till evening to drink or Im going on a drip.

The trouble is when I sip my drink I am sick.

what should I do ?

I took amitriptyline which is the same sort of drug, it really lowered my blood pressure further, made me gain weight and made me sleepy alot.

Hi I am sorry to hear about your mum, it must of been a shock for all of you.

But I am amazed how alike we are, I am absolutely the same , I can not take any stress at all.

Once when my son was rushed to hospital with appendix I fainted nearly in the room when all the doctors were checking my son. I also fainted when my daughter had her ears pierced.

But I think what might be a good idea is to get your sister or dad to take a photo of your mums face.

so you can look at it whilst lying down, fluid up salted up and all prepared.

It does sound crazy the way we are but we are ill too, so dont be so hard on yourself.

Let me know how you and your mum get on.

take care.

Thanks Julie I will let you know how it goes (only 8 days now).

Yes my heart rate increases with excersize , I use a excersize bike and usually get up to 105 BPM.

Lately I have notised that when I go out and start walking I can feel odd symptoms,

I feel breathless dizzy and unbalanced and get palpatations at the same time, its awful and makes me want to cry. I was told this is probally my blood pressure dropping because I suffer with NMH but Im not so sure.

I forgot to add that my grandmother also had a heart problem all her life but nobody seems to know what it was , apparently she didnt walk any where ever , wish I knew what was wrong with her.