dysautonomia - how do YOU control low blood pressure???

[Guest guest]

Goodness that's a tough one. I just recently had all the heart testing, tilt table and autonomic testing done and everything that was reccomended to me you are already doing. I honestly don't know what to tell you. My cardiologist would be stumped by you, and she is top notch in dealing with dysautomia. Good luck. I'll let you know if I hear of anything useless that might be of help to you.

[Guest guest]

I also have low blood pressure, but not even close to what you described. I really don't know of much new info from what you have already been told, sorry. I just love the advice, stay off your feet. Yup, OK doc, I don't think they remember that I am pregnant with my 5th kid right now. I would love to see my house if I stayed off my feet. I have learned when to make sure to sit, about 10 seconds before I pass out. Also I have noticed that I cannot stand still, if I keep moving I tend to feel better. The only other thing that really helps me is making sure I eat small meals all day. My worst times are in the morning so I try to eat as soon as I wake up. Sometimes it is completely useless, sometimes it helps. Oh yeah, and stay off your feet.

Maybe we can all take a couple of numbers from my daughter, Grace. She also has alot of dystautonomia problems, but for her it is high blood pressure. She is only 2 and her average is about 115/95 or so. When stressed she goes as high as 210/120, and remember she is 2. We are lost for treatment for her, because nobody has really seen this before. They do not want to put her on BP meds because there is no medical reason for this happening, and it is very inconsistent. She is always usually high, but sometimes in her sleep (deep sleep) she drops to normal for her age. They worry if they start medicating her, when it does drop in her sleep it may drop to low. Who knows? I guess we like to make the doctors think a little.

[Guest guest]

Im sorry, I feel like Im asking loads of questions lately, it's just

so nice to finally meet people that actually have experience with

all this junk... Its so hard to find people that have the slightest

clue what im talking about, that its a huge relief to find a big

group like this!!

anyways, my question...

MY biggest problem symptom wise at this point is autonomic

disfunction in the form of hypotension (low BP). Without

medication, my resting blood pressure is 65/30 and (they have

actually tested this on me) when I stand up for more than 30

seconds, my blood pressure drops to 0 (yep 0) and my heart rate

shoots up to over 160. Im useless.

My treatment at this point consists of diet, lifestyle and

medication...

I eat a high salt (5X's the reccomended amount) high carb diet. I

drink roughly 12 glasses of water a day (ugh).

I avoid heat, hot baths, large meals, standing for any length of

time, direct sunlight for any length of time, and too much physical

exercise. and when things get rough i use thigh high compression

stockings, which seem to help a bit too.

for meds I take

- Florinef (Fludrocortisone) - a mineralcorticoid, it basically

retains salt (for some reason my body doesnt hold onto salt, and

even with the high doses of florinef, i still lose most of the salt

I do eat through my kidneys.)

- metoprolol (beta blocker) - this keeps my heart from racing so

much.

I used to take amatine (midodrine) for symptomatic relief, however

since i got pregnant it is not an option as its contraindicated.

Im just curious, as I have never actually talked to someone else

with this problem (low bp) how any of you folks control it? I was

told by the 3 specialists I saw here, that I was the single worst

case they had seen in their career, so I realise that mine is

somewhat extreme (even on VERY high doses of both meds, my blood

pressure is still hovering around 80/40 right now).

does anyone here deal with this, if so what has been your docs

approach to it?

The odd thing was i never had any problems, until i gave birth to my

son... it was like I went into a crisis afterwards though, and after

all the smoke cleared, i was left with this inability to regulate my

pressure/heart rate.

[Guest guest]

I am intrested in knowing about this as well.

My 18 yer old daughter went to a local health fair and her sugar was 68 and her bloodpressure war 80/50. The nurse told her if she did not get this under control that she could fall asleep and not wake up. So far they are just asking her to make changes to her diet.

Best to you and yours!

Horsley

dysautonomia - how do YOU control low blood pressure???

Im sorry, I feel like Im asking loads of questions lately, it's just so nice to finally meet people that actually have experience with all this junk... Its so hard to find people that have the slightest clue what im talking about, that its a huge relief to find a big group like this!! anyways, my question... MY biggest problem symptom wise at this point is autonomic disfunction in the form of hypotension (low BP). Without medication, my resting blood pressure is 65/30 and (they have actually tested this on me) when I stand up for more than 30 seconds, my blood pressure drops to 0 (yep 0) and my heart rate shoots up to over 160. Im useless. My treatment at this point consists of diet, lifestyle and medication... I eat a high salt (5X's the reccomended amount) high carb diet. I drink roughly 12 glasses of water a day (ugh). I avoid heat, hot baths, large meals, standing for any length of time, direct sunlight for any length of time, and too much physical exercise. and when things get rough i use thigh high compression stockings, which seem to help a bit too.for meds I take - Florinef (Fludrocortisone) - a mineralcorticoid, it basically retains salt (for some reason my body doesnt hold onto salt, and even with the high doses of florinef, i still lose most of the salt I do eat through my kidneys.)- metoprolol (beta blocker) - this keeps my heart from racing so much. I used to take amatine (midodrine) for symptomatic relief, however since i got pregnant it is not an option as its contraindicated. Im just curious, as I have never actually talked to someone else with this problem (low bp) how any of you folks control it? I was told by the 3 specialists I saw here, that I was the single worst case they had seen in their career, so I realise that mine is somewhat extreme (even on VERY high doses of both meds, my blood pressure is still hovering around 80/40 right now). does anyone here deal with this, if so what has been your docs approach to it? The odd thing was i never had any problems, until i gave birth to my son... it was like I went into a crisis afterwards though, and after all the smoke cleared, i was left with this inability to regulate my pressure/heart rate. Please contact mito-owner with any problems or questions.

[Guest guest]

Oh I hear you on the kids. Luckily it was nice today so most of mine were outside. As far as the bp goes, I really have no clue to why it is so low for me. I have been low my entire life, and have always had an unexplained medical history. I did bring up a few questions to Dr. Cohen and he believes I do have a mild case of mito, but we never did any testing. He did not think there would be any benefit other than having a diagnosis. I have been told I need to go for the tilt table test to figure out my bp issues, but I have not done it. Unless they can tell me that they can help it, why bother with the test.

As far as the pregnancy and bp goes, it is just as weird as anything else I do. I am currently 35 weeks into my fourth pregnancy. My first three pregnancies I had toxemia with high blood pressure, yeah I know I'm just backwards all together. This one, so far, my blood pressure has stayed low the entire time. I have noticed I get spells of it dropping really low alot, depending on the babies position. He is now in a breech position, so I am living in a fog. Usually if I can get him to stay off my spine, I feel better. I do not take anything for it so, it is just a matter of dealing with the symptoms. Now I do have to watch my salt intake, because I am so high risk of going toxemic again. It is really not helping the low bp, but I guess the toxemia is worse for the baby so I comply. Thankfully this has been my only issue with this pregnancy, so I am quite thrilled. When I was pregnant with Grace (my mito baby) I had alot of heart problems. I did wear a halter monitor for 48 hours but they just concluded that I was having arrhythmia's.

Grace is just a medical mystery, too. They have checked her kidneys, heart and everything else many times. So far there is no reason for the high bp's. She does have an echo every year just to make sure there is no damage happening from all of this. We are also trying to deal with some sensory issues with her. She has extreme anxiety around "new" people and especially doctors. As soon as someone tries to touch her, she gets really red and the bp goes right up. We hope that if we can overcome some of these issues, the bp may regulate itself a little bit. Her pediatrician is really hoping this works, because she is afraid that she may stroke because of stress induced bp's.

Sorry if I confused you more.

[Guest guest]

LOL stay off your feet... I always enjoyed that one too...

I actually did today, just because its been a particularily bad

day... you dont WANT to see my house... im taking care of my 10 and

5 year old nefews and 10 year old cousin, as well as my own 2 year

old... LOL its a bit of a disaster...

but i feel great!

Im like you, I am able to recognize when im going to pass out, and i

sit down or squat... i havent actually passed out in over a year

now, as im so good at knowing when it will happen.

Do they know a cause of your low bp?

I was at Mayo Clinic last August, and they determined that mine is a

combination of nerve damage in my legs (abnormal 'sweat test'

revealed the nerves in the tops of my legs dont work... yep odd...

the bottom ones do just fine, but not the top. ??? lol!) and my

adrenal glands are a little less than perfect, as well as my

pituitary gland... this coupled with the fact that my heart has

always been a bit 'confused' when it comes to rhythm (I have a

history of unexplained heart blocks, and arrhythmias) spelled for

disaster. Lukily when i stay on top of my meds I am usually in

pretty decent shape, but this pregnancy is throwing me for a loop

right now... Im amazed at Grace's bp! she doesnt have any kidney

problems? I know my cousin is 5 and has blood pressure consistently

over 190/110, but its because he has fairly severe kidney damage...

I could see the concern about her dropping too low in her sleep,

thats kind of scary! thats strange that she drops in her sleep,

most people tend to go up... I know my best BP readings have always

been when im laying down or sleeping...

How far along are you in your pregnancy? have you found that your

blood pressure has been affected much by it? do you take any meds

for your bp? I am expecting in the next few weeks (Im 14 weeks

along right now) that my bp will lift up a bit.. i was told to

expect a drop around now, as the hormones interfere with my meds,

but theoretically (well see!) by 20 weeks I should be able to come

off my meds totally, as my blood volume (and therefeor pressure)

will be up from teh pregnancy... well see what happens... lol!

I gotta say as frustrating as it is, it is SO nice to have a REASON

for all this... I am so tiered of being a zebra, and having doctors

tell me over and over " hmm... interesting... sorry i cant help

you " ... now to actually be told there is a cause for this and im not

just a freak of nature... lol!

> I also have low blood pressure, but not even close to what you

described. I

> really don't know of much new info from what you have already

been told,

> sorry. I just love the advice, stay off your feet. Yup, OK doc,

I don't think

> they remember that I am pregnant with my 5th kid right now. I

would love to

> see my house if I stayed off my feet. I have learned when to

make sure to

> sit, about 10 seconds before I pass out. Also I have noticed that

I cannot

> stand still, if I keep moving I tend to feel better. The only

other thing that

> really helps me is making sure I eat small meals all day. My

worst times are

> in the morning so I try to eat as soon as I wake up. Sometimes

it is

> completely useless, sometimes it helps. Oh yeah, and stay off

your feet.

> Maybe we can all take a couple of numbers from my daughter,

Grace. She also

> has alot of dystautonomia problems, but for her it is high blood

pressure.

> She is only 2 and her average is about 115/95 or so. When

stressed she goes

> as high as 210/120, and remember she is 2. We are lost for

treatment for her,

> because nobody has really seen this before. They do not want to

put her on

> BP meds because there is no medical reason for this happening,

and it is very

> inconsistent. She is always usually high, but sometimes in her

sleep (deep

> sleep) she drops to normal for her age. They worry if they start

medicating

> her, when it does drop in her sleep it may drop to low. Who

knows? I guess

> we like to make the doctors think a little.

>

[Guest guest]

This seems to be a very common mito issue! Do most of you that

have the issue also deal with black outs and/or lots of dizziness? I

have problems with standing up quickly or bending over to pick things

up and then standing again. I have trained myself NOT to bend over

much and when I do I get up VERY slowly to avoid blacking out. I

have talked to Dr. Whiteman and a cardiologist and no recommendations

have been given to me at all. Dr. Whiteman preferred to let the

cardio deal with it as it isn't his specialty and the cardio didn't

seem to think it important.

Darla

> I also have low blood pressure, but not even close to what you

described. I

> really don't know of much new info from what you have already been

told,

> sorry. I just love the advice, stay off your feet. Yup, OK doc,

I don't think

> they remember that I am pregnant with my 5th kid right now. I

would love to

> see my house if I stayed off my feet. I have learned when to make

sure to

> sit, about 10 seconds before I pass out. Also I have noticed that

I cannot

> stand still, if I keep moving I tend to feel better. The only

other thing that

> really helps me is making sure I eat small meals all day. My

worst times are

> in the morning so I try to eat as soon as I wake up. Sometimes it

is

> completely useless, sometimes it helps. Oh yeah, and stay off

your feet.

> Maybe we can all take a couple of numbers from my daughter,

Grace. She also

> has alot of dystautonomia problems, but for her it is high blood

pressure.

> She is only 2 and her average is about 115/95 or so. When stressed

she goes

> as high as 210/120, and remember she is 2. We are lost for

treatment for her,

> because nobody has really seen this before. They do not want to

put her on

> BP meds because there is no medical reason for this happening, and

it is very

> inconsistent. She is always usually high, but sometimes in her

sleep (deep

> sleep) she drops to normal for her age. They worry if they start

medicating

> her, when it does drop in her sleep it may drop to low. Who

knows? I guess

> we like to make the doctors think a little.

>

[Guest guest]

I have to reccomend the tilt table test... there ARE things they can

do for it... theres medications if it interferes enough with your

day to day life, and there are ways to avoid it from getting too

bad... but it sounds like you have it mostly under control!

Im glad to hear your bp has stayed low this pregnancy! toxemia is

scary stuff!! (I think I remember reading that Grace was premature,

is this from the toxemia?)

Keely

> Oh I hear you on the kids. Luckily it was nice today so most of

mine were

> outside. As far as the bp goes, I really have no clue to why it

is so low for

> me. I have been low my entire life, and have always had an

unexplained

> medical history. I did bring up a few questions to Dr. Cohen

and he believes I

> do have a mild case of mito, but we never did any testing. He

did not think

> there would be any benefit other than having a diagnosis. I have

been told I

> need to go for the tilt table test to figure out my bp issues,

but I have

> not done it. Unless they can tell me that they can help it, why

bother with

> the test.

> As far as the pregnancy and bp goes, it is just as weird as

anything else I

> do. I am currently 35 weeks into my fourth pregnancy. My first

three

> pregnancies I had toxemia with high blood pressure, yeah I know

I'm just backwards

> all together. This one, so far, my blood pressure has stayed low

the entire

> time. I have noticed I get spells of it dropping really low

alot, depending

> on the babies position. He is now in a breech position, so I am

living in a

> fog. Usually if I can get him to stay off my spine, I feel

better. I do not

> take anything for it so, it is just a matter of dealing with the

symptoms.

> Now I do have to watch my salt intake, because I am so high risk

of going

> toxemic again. It is really not helping the low bp, but I guess

the toxemia is

> worse for the baby so I comply. Thankfully this has been my only

issue with

> this pregnancy, so I am quite thrilled. When I was pregnant with

Grace (my

> mito baby) I had alot of heart problems. I did wear a halter

monitor for 48

> hours but they just concluded that I was having arrhythmia's.

> Grace is just a medical mystery, too. They have checked her

kidneys, heart

> and everything else many times. So far there is no reason for

the high bp's.

> She does have an echo every year just to make sure there is no

damage

> happening from all of this. We are also trying to deal with some

sensory issues

> with her. She has extreme anxiety around " new " people and

especially doctors.

> As soon as someone tries to touch her, she gets really red and

the bp goes

> right up. We hope that if we can overcome some of these issues,

the bp may

> regulate itself a little bit. Her pediatrician is really hoping

this works,

> because she is afraid that she may stroke because of stress

induced bp's.

> Sorry if I confused you more.

>

[Guest guest]

Yeah, toxemia is never fun. Grace was actually born full term, but I just had a horrible pregnancy with her. With her, I had a lot of problems with my BP (highs and lows). My old OB always swore that I did not have toxemia with Grace, because my BP was not high enough. I did, however have protein in my urine and my BP was very high for me. My new OB agrees and also thinks I did have toxemia with her too. I am also being followed by a perinatologist, because of all my prior pregnancies. I guess being safe has really paid off. This has been the best pregnancy I could have imagined. Best wishes for you on your pregnancy. I hope everything goes smoothly for you.

[Guest guest]

> Im sorry, I feel like Im asking loads of questions lately, it's

just

> so nice to finally meet people that actually have experience with

> all this junk... Its so hard to find people that have the

slightest

> clue what im talking about, that its a huge relief to find a big

> group like this!!

>

> anyways, my question...

>

> MY biggest problem symptom wise at this point is autonomic

> disfunction in the form of hypotension (low BP). Without

> medication, my resting blood pressure is 65/30 and (they have

> actually tested this on me) when I stand up for more than 30

> seconds, my blood pressure drops to 0 (yep 0) and my heart rate

> shoots up to over 160. Im useless.

>

> My treatment at this point consists of diet, lifestyle and

> medication...

> I eat a high salt (5X's the reccomended amount) high carb diet. I

> drink roughly 12 glasses of water a day (ugh).

> I avoid heat, hot baths, large meals, standing for any length of

> time, direct sunlight for any length of time, and too much

physical

> exercise. and when things get rough i use thigh high compression

> stockings, which seem to help a bit too.

>

> for meds I take

>

> - Florinef (Fludrocortisone) - a mineralcorticoid, it basically

> retains salt (for some reason my body doesnt hold onto salt, and

> even with the high doses of florinef, i still lose most of the

salt

> I do eat through my kidneys.)

>

> - metoprolol (beta blocker) - this keeps my heart from racing so

> much.

>

> I used to take amatine (midodrine) for symptomatic relief, however

> since i got pregnant it is not an option as its contraindicated.

>

>

> Im just curious, as I have never actually talked to someone else

> with this problem (low bp) how any of you folks control it? I was

> told by the 3 specialists I saw here, that I was the single worst

> case they had seen in their career, so I realise that mine is

> somewhat extreme (even on VERY high doses of both meds, my blood

> pressure is still hovering around 80/40 right now).

>

> does anyone here deal with this, if so what has been your docs

> approach to it?

> The odd thing was i never had any problems, until i gave birth to

my

> son... it was like I went into a crisis afterwards though, and

after

> all the smoke cleared, i was left with this inability to regulate

my

> pressure/heart rate.

[Guest guest]

Sorry about the repost. Accident-total brain fog right now!

Anyways I have very low bP too and have found no answers. Had a tilt

tabel test with moderate to severe findings, BP, pots, syncope. I

have tried to increase fluid intake, but it just seems the more I

drink the more I unrinate and I always feel dry and dehydrated. I

have increased salt and nothing has worked. I would love to know

about midridone (sp). Did it help when you could take it? I am

suffering so much and doing all that I have been told to, but no

relief. When I went to the conference a couple of weeks ago, I think

it was too much sitting in a chair. My legs were swollen and I felt

worse than ever. I know elevating my feet definately helps.

Dawn