miranda

morning everyone , I want to say Thank you from my Heart, for being there for me yesturday .

I was distraught and ended up sleeping very heavy all night from exhaustion, lol.

Julie , you did make me laugh - no crying cos I could dehydrate I must remember that one .

I am still waiting for my neuro to write to my doctor about me having the Florinef , cos my doctor thinks theres nothing wrong with me ( my blood pressure has always been near normal when I see him) , my neuro was furious when I told her that , she said she is going to write him a stern letter .

Firewatcher , my thyriod blood test has always come back ok , however I always have a low body temprature and always feel cold (I put that down to propranalol pills maybe ?). Although my last blood tests came back with some problems with my hormones , the Nurse at the doctors said its perimenopause.

KC , I think you touched a nerve there - when you said " when will this ever go away ?".

My neuro said I will have this all my life (not what I wanted to hear) but I do wonder will it shorten my life ?

We cant find a reason for me having this problem , I have had a mri done and its all normal.

I am pleased you have your prayer journal and that it helps you. I have been doing meditation on and off over the past 7 years so maybe I should turn to that again to stop my mind being so out of control.

I am sorry but I am so worried about myself.

I am sitting here and cant stop crying. Ive been doing everything right , salt , fluid , compressions....

so tonight I felt shakey whilst cooking dinner , and took my BP and it said .....

74/54 and pulse 98.

I feel so fed up and feel this is gonna be my life , I cant stop crying...... why has this happened to me , Ive always been good , never smoked or taken drugs , I just feel broken inside.

I was reading that doing exercises to strengthen your calf muscles can really help.

Has anyone found this to be true ?

Also , what techniques do you use, to abort a faint ?

Thanks for the link

I was wondering if I should get them sorted out , I heard the coil can stop periods .

Also I always get alot of gum bleeding , I have sensitive gums but could the twice a day brushing and bleeding not be helping ?

I just want to sort this problem out as best I can , I have been doing the salt and fluid thing and now it says I have high blood pressure ,lol.

This is my plan ....

come off amitryptyline

reduce propranalol

stop periods

drink more

salt meals - (can you get salt tablets in the uk ?)

Maybe take flux ??? that raises blood pressure.

Thanks for the replys , its really nice talking to other sufferers.

I am also on Amitryptyline and am cutting back on that too , I can feel the difference already.

I just dont want to rock the boat.

Another thing I wonder about is my heavy periods ,

can this cause OH ?

My problems began years ago , I used to get fast heart beats and feel panicky and yuck.

Then my gp put me on propranalol and my fast heart beat problem calmed down alot.

Now I am seeing a neuro who discovered I had orthostatic hypotention ,

she wants me to come off the propranalol but I am too afraid to try.

from what I have read propranalol can stop the body producing adrenalin

which causes orthostatic hypotention.

Am I right ? or have I read it wrong.

I dont get the bruising thing , so maybe I dont have it.

Good luck searching for answers .

I was interested reading this , I have very flexy joints and my hands can bend backwards, I can bend the ends of my fingers and push my thumb down against my wrists. My ankles dont sit well and flop inwards when resting. I can put both feet around my neck easily. My mother and grandmother are the same and my daughter has bendy arms that go back wards. So could this be what I have ?

oh can you tell me more about the DVD

does it play in region 1 (europe)

any info about it much appreciated.

Hi , I have just taken my blood pressure sitting and then standing ,

122/76 to 88/50

feeling very dizzy too, when I read it I burst into tears and my hubby gave me a cuddle

and said it will be ok once I get the meds ( i hope so).

I dont know why I feel so worried , its making me feel sick.

Im worried that I will become worse and need alot of taking care of , but I would say I am the same as I was 7 years ago when it started or maybe slightly better - so thats hopeful.

How do you all stay so upbeat about it all ,

I think I need to have acceptance before I can move forward , its been a shock.

thanks for listening , your all so nice

Thank you dakota.

I think I have had problems for a long time but didnt know it.

20 years ago I passed out a few times , when under stress but it was not a daily problem then.

Also as a child I used to get terrible stomach pain when stressed , which makes me wonder if I had it then.

When I stand up , I often feel my heart beat in my head - is this OH ?

I am seeing the neuro again in May and wonder if there any other questions I should ask.

forgot to say ,

I am taking propranalol 30 mg twice a day which has settled my racing heart problem a bit.

I am also taking amitryptyline for migraine.

The neuro wants me to come off both of these meds, cos they can make orthostatic problems worse she said.

Yet I read that propranalol can help ? Totally confused by this.

Thank you for the reply , its so nice to speak to another sufferer ,after all this time .

I dont know why it took me so long to get diagnosed , I think the doctors do not know about this condition so put it down to panic.

I am 41 years old and my symptoms started when I was 34 , I became agrophobic cos I would feel faint when I was out.

I am following the high salt and fluid diet and its helped slightly , but 2 days ago I went Ill whilst in the shops , all of a sudden I got hot and very shakey so knew what was coming , luckily there was a chair in the shop so I sat down quickly.

Is there anything you can reccomend for these attacks? They are so draining.

I got my blood results yesturday that show Im now perimenopausal , so maybe that dont help.

Thanks for listening and I hope to learn alot here.

Hi ,

I am new here after just being dignosed with some sorta orthostic problems.

for 7 years i have felt awful but docs said it was panic attacks.

Then recently I have seen a neurologist who took my blood pressure whilst sitting and then standing ,

it was then she said I had orthostatic hypotention.

Looking back over the past 7 years I can remember one doctor who said my pulse doubled when I stood up , his words were

"how strange".

I also the I have the NMH , mainly because If I get stressed I feel like I am fainting , instantly.

Infact last june I did faint from this and it is my worst symptom and effects me daily.

I read that orthostatic hypotention is a degenerative disease , is this true ?

Yet some places say different. My neuro said I will have this for life , she wants me to take a pill to raise my blood pressure.

please tell me there is hope , I have cried many tears over this for 7 years.