miranda

Thank you very much for your reply on this. Strangely enough the past 4 weeks I have been on a diet to loose weight and its called the Harcombe Diet. Its all about eating nature foods , no processed foods and I am really enjoying it. However I have alot of inflammation in my body , my spine and ribs and today my right hand hurts and looks swollen. But I am still having milk , so maybe it doesnt help. Are creams and cheese ok then ?

I am interested in the no wheat , sugar. Why is this ?

kC , what are the adrenal support tablet you are taking ? thanks for all the replys , seems hormones can bring on these symptoms.

thanks for replying , I am finding I am feeling very depressed with all this lately , my mind goes over and over all the time. Thats interesting cos my blood tests came back as I am in menopause and I am only 41 . So could this be the reason ?

I read this online ........ What becomes of people with dysautonomia? Fortunately, the prognosis appears far better than it was in the days when the disorder was called neurasthenia. This is likely because bed rest is no longer considered the treatment of choice. Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives. Sometimes, in fact, the probability that things will ultimately improve on their own may be the only thing to keep some of these individuals going So, will we all improve ?

is that true if Meds caused it ?

thanks , I hope your feeling better now. I had a vaso vagal episode this morning , nearly fainted .

Hi , I was hoping someone might know the answer to this .... I am on propranalol , 50mg a day and I have orthostatic hypotention. So I want to come off the propranalol to see if it helps , but I have tried before and feel so bad and anxious without it. Are there any other pills like propranalol that dont cause Orthostatic Hypotention ?

Thanks , I waited for the phone call and it never came . Lieze , funny you mention the Beta Blockers cos my neurologist mentioned that might be contributing to my low blood pressure , and I also take Amitriptyline which can cause Orthostatic Hypotention too. But my vaso vagal problems started before I took these pills , so it seems the pills just agravate it further , yet make me feel much better. whats a girl to do ? I wonder if I do have Dysautonomia , I think my neuro mentioned it but she was talking so fast. She said I will always have it but it can be controlled.

I was diagnosed with Orthostatic Hypotention about 4 months when my neurologist took my blood pressure sitting and standing , she said my blood pressure bottomed out. For 7 years I have been complaining about my heart palpatations and how severe they can feel and make me so dizzy , and was given a ECG and its fine, then put on propranalol. My doctor said she wasnt happy with me and wanted us to find the cause of my OH so said I should see a blood pressure specialist. So my neurologist reffered me to one , and today I found out the man doesnt want to see me, cos hes looked through my notes and has written some recommendations for me instead. Well I am feeling upset about this after spending the weekend feeling shakey and severe palpatations that feel like they are in my throat. My neurologist is going to phone me in a couple of hours and I dont know what to say. I worry there is more going on and they dont know it. I read about all the causes and feel I could have some of them. My hands and feet are really bendy , most of my family have heart conditions and I had saliva gland trouble. I feel no one is listening to me !

I take the propranalol and it really helps me calm down , hope it helps you too.

I keep wondering if I should order this DVD But do not know if its applicable to me. I have OH & vaso vagal episodes , irregular heart beats and been diagnosed with dysautonomia. Any help with this pls ?

Thanks I will certainly mention that when I next go to the hospital, it should all be in my records because I got admitted to hospital for the day to have them look into my saliva glands , they pushed a probe into the gland under my tounge and took xrays of it. The results were clear and they said they couldnt understand why it was enlarged and swollen. After 6 months it went away on its own but the pain was terrible. You sound like you have studied all this for a long time , I am at the beginning and learning. moss on a tree , , I feel like I am the ivy growing up the tree too scared to let go incase I fall ,lol.

I love reading your posts Eric, At what age did you start getting the fainting/anxiety symptoms ? How long have you suffered ? Mine started when I was 34 , I am now 41. My grandmother had very low blood pressure all her life and suffered anemia , but I dont have that. It seems they are looking for a cause of my problems but like you, I am not sure I have a reason for this ? I have scoliosis of the spine. I had measels twice as a child. And I had blocked saliva glands when this all started. I know I should'nt but today I cried about this situation , I want to stay positive but get exhausted with it all going round in mind. sometimes it feels like a nightmare.

Interesting stuff . My blood test came back saying I have a lack of hormones due to early menopause and I am only 41. Could this be making me ill ?

Erik , do you think its possible we were born with this ? when I was a kid - right up until my mid 20's I used to get terrible stomach pain when stressed , it was a really bad pain and made me pass out a few times. Looking back I think this might of been it. My neuro told me that people with this problem have sudden low blood pressure when stressed , so this explains why our blood pressure drops suddenly. My blood pressure when relaxed is either low or very low, so goodness knows how low it drops in a episode. This morning I popped to the shops to get some milk , and when standing in line felt the horrible sweats come on , and I felt really shakey and unbalanced . Do you get the unbalanced feeling too ?

yes I notised this , a few days ago we had rain and the skys were grey and heavy , I felt so dizzy all day and could walk straight. I wasnt sure if it was migraine or OH.

thanks ERIC , I learnt alot I am seeing a blood pressure specialist soon , I was diagnosed by a neurologist and my doctor and the neurologist are discussing the best treatment for me, so its great to read up on it. Did you start the fludro at a high dose at first ? and what dose do you take now. How long did you go undiagnosed ? I spent 7 years waiting to feel better. And it knocked my confidence alot. This morning I had alot of fluid and alot of salt, Ibuprofen and put on compression garments from the waist down , I drove the car to Tescos and took a funny turn in there , but didnt pass out! So something tells me I need the meds , or do we never control it 100% ? 5 years ago I spent a few days in hosptial on a drip ,due to a lack of potassium , could this be a problem for me I wonder . Thanks for the info , I really appreciate it .

Erik , you sound so much like me its nice to know Im not alone with this. I have some fludro in the fridge but havent started taking it yet . I think I am worried about side effects but maybe I should just take it and see if it helps. Why does being upright more help , does that mean being on our feet more ? I think for me where I kept nearly fainting whilst standing in line , it caused me to have a phobia about these situations. I always walk into a shop with concern about the outcome, which certainly doesnt help the situation. what are these other pills you talk about ? NSAIDS, DDAVP, EPO

I just had a panic attack at the cash point machine , seems to get me there everytime. My neuro said with NMH , when ever you get stressed your blood pressure drops. Yet my blood pressure was fine before I left the house. Would florinef stop this happening ? or any other pill ?

I read that some people take this pill as and when needed , can we do this ?

Thanks Erik , seems to me that you need to take a medical course to understand this stuff. My doctor yesurday admitted he didnt understand it all . At least he was honest I suppose. I am taking ibuprofen daily , as advised by my neurologist and I think it helps somewhat , but I cant decide which is better cos daily doses of aspirin cant be good ,? My OH & NMH have been with me for 7 years now , its a daily struggle with it. If I go shopping I can near faint or faint, I get hot and flustered and shakey, and I feel my heart slow right down (sometimes I feel like it stops) then I get dizzy , the room goes dark and I get a high pitch screach in my ears , when all of a sudden my heart starts to pound again ,just as I am about to pass out. Its at this point I recover somehow. The funny thing is I was always told It was a panic attack by my doctors ,lol. (SOME panic attack ehh!) I often feel it standing in line . I can feel faint if excited , like when I won some money on the bingo I fainted ,lol. I can get so ill that I have to pack myself off to bed, just for a argument. Does the NMH improve in time ? or am I stuck like this ? I dont understand how OH & NMH are connected and need the same treatment , does anyone have any info on this connection ? thank for reading.

Hi , I have a condition called MAV , which stands for migraine associated vertigo, you dont need to have a headache to get this, you can just feel dizzy. Last night I had a tingly head and today I been really dizzy and blood pressures been alright. Thats why I never know if I am dizzy from Mav or OH , .

thanks , the pills are scored so easy to cut, do they help you ? fingers crossed it helps.

Can I do this ? I have my pills ready but cant bring myself to take them, I feel a lower dose might be the way to go. I am scared !