miranda

Brye, dont worry I often think "oh NMH" when a episode starts ,lol.

Actually its nice meeting others with the same diagnosis as me .

My worse situation is shopping and standing in line ,

I get anxiety knowing I might pass out and of course this makes it more likely.

I have episodes daily and as my neurologist said to me .....

"This disorder totally knocks your confidence"

How true !

Hi Mary , I can always tell which is OH or NMH

I have fainted with both , but when I fainted with OH

I stood up and blacked out with no warning.

when I fainted with NMH , I felt sweaty , sick, shakey, vision went and a high pitch noise in my ears.

The NMH is worse cos it feels so bad to me.

I have these two conditions

Why do I have them both ?

I try to understand how they are related but dont get it ?

can some one explain please.

I do not know ?

For some reason after all my tests , the hospital think this is the case.

I will ask them on my next appointment why they think this.

I do not know ?

For some reason after all my tests , the hospital think this is the case.

I will ask them on my next appointment why they think this.

Thanks , I went to see my doctor this morning and he said

I had hypovolemia caused by a faulty ANS ,

he has prescribed me some slow release sodium pills to try .

Thanks , they dont say if I have Hypovelmic problems , I was just told I have OH.

Could this be the case, if they are suggesting these measures ?

My consultant advised me to do this to help with my Orthostatic Hypotention.

We raised it by 4 Inches and it feels ok.

However I do not understand why this would help ?

any ideas ?

yes I get this , I have not been diagnosed with pots but orthostatic hypotention,

I dont know why this happens.

I also get it if I look up at something and my heart starts racing - yuck!

Hi everyone , I have been having vaso vagal episodes for 7 years now.

was put on propranalol for this a few years ago which helps somewhat.

I was also put on 10mg of amitryline for my migraines.

My problem is , that my neuro says that these pills could be causing my orthostatic hypotention.

I have also gained alot of weight being on these pills.

I usually take 30mg before bed.

and 20mg in the morning.

But wonder if I should take the night time dose ?

how long does it have effect on the body ?

Would I be best just taking a morning dose before leaving the house.

thanks , I was hoping to take these instead of florinef ,

I will book an appointment with my gp and see what they say .

Thanks again.

Does make me wonder if having periods are a problem for us.

I read blood loss will make us more symptomatic.

Hi , I am in the Uk and have been trying to find salt pills,

so this morning I popped into my local pharmacy and they said they have

slow release sodium pills , ?10.99 a bottle.

So has anyone tried these and do they help ?

I am sure there must be people near you who have this condition but you dont know of them.

My neurologist told me of another lady she sees who has dysautonomia and I felt like asking her to contact me cos It does make you feel alone . At least we all have each other on here .

Summer , thats interesting that we have autistic children too , there must be more to this.

wow I have read that Ige levels release histamines

so if he has alot of ige

he must have alot of histamine.

So do anti histamines help raise blood pressure in people who suffer this ?

now I find this confusing

my son is under a acute allergy clinic and they told us that his blood test showed

he has the highest ige level they have ever seen ? Is this the same thing ?

apparently it should of been between 10 - 50

and his was 10,500

so is the ige level the histamine level ?

Thanks everyone .

My son also has anaphylaxis to certain foods, so I find the connection interesting.

Do people with mastocytosis produce too much histamine or not enough ?

I had plyori infection years ago , my symptoms was bloating stomach and pains in my chest ,

when diagnosed they treated it with 3 different antibiotics which worked.

Hi Reen,

Thats exactly how I feel , I cant stop thinking about her and shes emailed me already.

I dont know how common this dysautonomia is , but it seems like a miracle to me.

I see you have a son with aspergers syndrome "Me too" , my son has just turned 16

and has aspergers syndrome.

I went shopping today , salted myself up , drank lots of fluid , had my compressions on and felt good.

Then I bumped into a old friend , who told me shes been ill and then said she had

orthostatic hypotention and NMH - LIKE ME!!!

I nearly fell over with shock , she was nearly in tears and we compared all our symptoms and we are both exactly the same, except she has bladder weakness with hers.

I still cant believe it and we are going to keep in touch cos she lives very close to me.

It made my day !

I notised I get worse in the evening and then realised its after I eat a meal.

My heart starts racing. So now I eat a smaller evening meal and it seems to help.

since I have been on a natural diet , ( avoiding wheat also )

my stomach has stopped bloating so I will be staying on this diet.

But I still have inflammation , most of the time . I have scoliosis and fused ribs so think thats the cause.

thanks , I will look into that.

I was thinking of getting pottasium because new research says it helps PMT.

forgot to add , there is some info online about MAV causing dysautonomia

http://www.dizziness-and-balance.com/disor...rthostatic.html

Hi , Yes I am the same , I have been diagnosed with MAV

migraine associated vertigo. Its tough but does improve over time.

Beta blockers are a preventative medication for mav , another pill I am on which has really helped

me with the dizziness is "Amitriptyline" I only take 10mg at night cos it can lower blood pressure.

without it I can not function at all.

Another thing you can try is the Migraine diet , it can help some people but it didnt help me.

good luck