Sunny--Having a setback...late night posts are never good..[g]

[Guest guest]

Hi Sunny,

I'm glad you wrote. :-) It is nice to hear from someone who doesn't

post often too. I really appreciate the acceptance that has been

offered to me. Thanks. It really makes it easier to post.

Your friend who has the low BP and other symptoms. Yes, dysautonomia

and blood volume problems. I was evaluated for it this past summer.

Unfortunately, although I normally have BP in the 100/60 range, I had

a period of 6 weeks over the summer that my pressure was registering

130/90 and I was having throbbing headaches when I woke up. So they

determined I couldn't have it with high blood pressure.

I do have temp change intolerance a lot, and now the dysmotility, but

don't have any heart irregularities or dizziness. I have had

occassional mild lightheadedness when bending forward, but not

routinely. I would assume my BP is not routinely low either, except

for now when I am not eating and drinking right. I would think

having weeks of high blood pressure and then weeks of low blood

pressure would qualify as blood pressure disregulation, but I guess

they don't look at it that way. So I am glad I don't have that for a

diagnosis as well.

Right now, I am taking no meds or supplements besides Synthroid every

day. Thank you for the tip about isometric exercise raising

pressure. I DID NOT know that! I already tried a little today while

lying on the couch.

Yes, I am drinking gatorade. I can't eat licorice right now, and

avoiding supplements until I am sure they are not part of the problem

with stomach pain. Yes, when I can tolerate a protein, I always have

good results from combining carbs with protein. It helps my sugar

problems. Right now I have days when I can't go beyond juices and

clear liquids and I feel like I am on a rollercoaster with the sugar

symptoms.

When I am getting enough nutrition, I do try to stay as active as I

can. I have on occassion attempted lite weights and using body

weight exercise. With 2 pound hand weights. I do think it helps, but

I find it so difficult to maintain any kind of consistency with it

when I am not able to get enough nutrition. On liquids I have just

NO energy at all and can barely move.

Taking pressure at home seems like a good idea, but I thought you had

to really know how to do it?

I also agree with you about the need for activity and movement. Even

after my surgeries, I discovered this for myself that resting is

good, but you can overdo it and have to start moving. In the past,

over the years, I stayed active in the same way you do, doing a few

minutes of this or that and resting, etc. I also did charts to try

to gradually increase my activity level, successfully. Right now,

the problem is a lack of nutrition. Even with enough calories in

liquids so that I don't even think I have lost much weight, I still

don't have enough nutrition. Too many carbs and sweets, and no

protein or fat. It really effects how I feel quite a lot. This is

definitely a problem I will have to solve somehow if I will be able

stay physically active.

Thank you so much for such a thorough and thoughtful post. Sounds

like you are doing a very good job of taking care of yourself. I

hope it continues to keep you going for a looonnng while.

Thanks Sunny,

:-)

Adam

> Hi, Adam

>

> I read almost all the posts, and write occasionally only, when I

think

> I might have something to add. Mostly, though, I am just amazed at

the

> knowledge and patience and kindness that I find at this site, and

feel

> that I can't contribute much. So many people have so much more

> knowledge and wisdom that I do.

>

> I do want to tell you, write here as much as you are able. People

are

> always accepting. Do not worry about that.

>

> I do want to tell you that low blood pressure can be a huge problem

> that you need to investigate. I do not suffer from it personally,

but

> have a close friend (probably mito) who does. It can go by several

> different names. This is from her experience. There is not much

> medical treatment for it, as far as prescription drugs, and some

meds

> make the problem worse. There is one med that she takes sometimes.

Many

> docs dismiss it. A tilt table test can identify it, It can be

part of

> mito, they think, because blood pressure regulation is part of the

> autonomic nervous system, which can also show as problems with

> temeprature regulation and dysmotility, among others. Be sure you

do

> not take any meds that have a lowering of BP as a side affect. That

can

> also go for herbs, etc.

>

> My friend has seen an expert in this area, in Toledo. She feels

that

> understanding/knowing what the problem is, and knowing how to

minimize

> it has helped her a lot. My friend has tachychardia along with her

> dizzy spells and drop in BP. Do you get that too? She can usually

feel

> the spells coming on, and and avoids falling down by sitting/lying

> down. She feels that if she contracts her big muscles

isometrically

> that this sometimes helps. (Isometric muscle exercise generally

raised

> BP for anyone, and should therefore be avoided by people with

> hypertension - my problem) She feels that keeping hydrated,

especially

> with salt/sugar (like gatoraide) helps. She takes licorish (sp??)

in

> some form (can raise BP), and watches that she eats/drinks

regularly.

> She feels that mixing cabs with protein % fat is the best for her.

She

> also feels that keeping active when she can do it has helped her,

and

> even lifts some mild weights to keep her muscle tone when she can.

> There is one med, and only one med, that they say helps. I did

forget

> it, because I did not need to use it. But, the specialist would

need

> to do that of course. I can try to find the name of the med if

> you/anyone would like to know.

>

> Getting this evaluated by a doctor who knows about this is most

> important. The more you can tell him when you go the better. What

is

> your usual BP? Do you know how to take your own pressure? Try to

take

> it at various times of day, etc. Try to see when it drops. Keep a

log

> over time.

>

> Nutrition in general, especially fluids with the electrolytes is

also

> very important. I do not have experience with needing IV's or other

> nutritional helps, but maybe that can be a short term boost for

you.

>

> Now a thought from me. This is only MY personal experience, and my

not

> apply to many other people with mito. In thinking back over the

last

> 20 years, I am TOTALLY convinced that I need movement and exercise

to

> get better. After two major surgeries I had a terrible time

> recovering. Res, rest, rest they told me. True, I needed to rest,

but

> I am convinced that i rested too much. I now believe that I also

> benefit from being active (including my much touted weight lifting -

i

> know some are tired of hearing about it). Finding that magic

balance

> between rest and pushing myself is the key for me. Instead of

napping

> during the day, I take constant short rests (many times at the

> computer). I wash 2 windows, sit and rest. I do the dishes, sit

and

> rest. Cut some vegetables, rest........Up and down. All day long.

I am

> convinced that pushing myself then resting has helped me.

>

> Adam, keep in mind that your surgery took a lot out of you, and

your

> nutritional limitation further challenges your body. For you right

> now, Adam, it might mean only one minute standing brushing your

teeth,

> then sitting/lying down again. One minute up, then resting. My

> thought is to try it that way, being active briefly as frequently

as

> you can. Medicine in general has now discovered that. They get

people

> up from really MAJOR surgeries, if possilbe, as soon as they can.

> Movement does the body so much good, IF we can tolerate it. Only

you

> know what you can tolerate.

>

> Fiinally, Adam, try to look at this as another challenge that you

can

> overcome. Try to be patient with your condition right now, and do

all

> the things that make sense to you, all the ideas that speak to how

> your body is feeling. Have hope that your body can heal, adapt.

Give

> it the nutrition, rest, and movement that you are able. Get the

best

> medical advice that you can. the belief that the body has a

tremendous

> ability to adapt and heal has kept me going through some really

rough

> times. The believe that I must adapt my activity to what feels

right

> for me has been a further key.

>

> Warm wishes that you will stay hopeful and see improvement over

time.

> Hugs, Adam

>

> Sunny

>

>

[Guest guest]

Hi, Adam

Thank you for your kind post. I have enjoyed reading yours. I see

that you always make a huge effort to be light and upbeat, even when

speaking about very problematic issues. I do hope you find a solution

to your nutrition dilemma, and that the new gastro specialist has some

answers for you about your pain.

About the BP regulation - many docs don't give it much attention, and

in my friend's experience, she saw quite a few specialists before she

was diagnosed. Not that I am saying you have it, just don't dismiss it

out of hand either. Something to keep in the back of your mind.

As far as taking your own BP, it is really very easy. I have done it

for years. I have hypertension, which does fluctuate a lot, so I like

to monitor it myself. Additionally, the cuffs and machines in docs

offices and hospitals are not always callibrated properly. When they

get a pressure that I KNOW is out of line for me, I ask them to take it

again, with another instrument. You would be amazed at the variation I

have gotten from one instrument to another. In my opinion, the

readings I get at home are the best. I always do it the same way, same

body position, same instrument, so I can trust that the CHANGES from

one time to another are real. Maybe I am a little off with the

reading by a few points,but it is with consistency, so I can trust the

changes. You can buy a cuff and stethescope and learn to do it

yourself. It would take a few minutes to learn, and then it is a

matter of practice. Or there are the automated gadgets. If you take

your pressure enough, you will see patterns and get the feel of it very

easily. Just a thought. Doing it for myself makes me feel more

secure. And, btw, I don't do it all the time. Just once in a while,

mostly now.

I do try to make observations about what might make me feel better and

what makes me feel worse. As a result of that, and finding a doc who

suggested mito, and finding this site with so much wonderful

information and such kind people, I am feeling better now than I have

felt in a long time, both physically and attitudinally. Thank you for

your very kind wishes. Likewise, Adam, hope you get some answers that

will taket you to a good spot again. Be patient, take care, good luck!

Hugs, Adam

Sunny

>

> Hi Sunny,

>

> I'm glad you wrote.  :-)  It is nice to hear from someone who doesn't

> post often too.  I really appreciate the acceptance that has been

> offered to me.  Thanks. It really makes it easier to post.

>

> Your friend who has the low BP and other symptoms.  Yes, dysautonomia

> and blood volume problems.  I was evaluated for it this past summer.

> Unfortunately, although I normally have BP in the 100/60 range, I had

> a period of 6 weeks over the summer that my pressure was registering

> 130/90 and I was having throbbing headaches when I woke up.  So they

> determined I couldn't have it with high blood pressure.

>

> I do have temp change intolerance a lot, and now the dysmotility, but

> don't have any heart irregularities or dizziness. I have had

> occassional mild lightheadedness when bending forward, but not

> routinely.  I would assume my BP is not routinely low either, except

> for now when I am not eating and drinking right.  I would think

> having weeks of high blood pressure and then weeks of low blood

> pressure would qualify as blood pressure disregulation, but I guess

> they don't look at it that way.  So I am glad I don't have that for a

> diagnosis as well.

>

> Right now, I am taking no meds or supplements besides Synthroid every

> day.  Thank you for the tip about isometric exercise raising

> pressure.  I DID NOT know that!  I already tried a little today while

> lying on the couch. 

>

> Yes, I am drinking gatorade.  I can't eat licorice right now, and

> avoiding supplements until I am sure they are not part of the problem

> with stomach pain. Yes, when I can tolerate a protein, I always have

> good results from combining carbs with protein.  It helps my sugar

> problems.  Right now I have days when I can't go beyond juices and

> clear liquids and I feel like I am on a rollercoaster with the sugar

> symptoms.

>

> When I am getting enough nutrition, I do try to stay as active as I

> can.  I have on occassion attempted lite weights and using body

> weight exercise.  With 2 pound hand weights. I do think it helps, but

> I find it so difficult to maintain any kind of consistency with it

> when I am not able to get enough nutrition.  On liquids I have just

> NO energy at all and can barely move.

>

> Taking pressure at home seems like a good idea, but I thought you had

> to really know how to do it?

>

> I also agree with you about the need for activity and movement.  Even

> after my surgeries, I discovered this for myself that resting is

> good, but you can overdo it and have to start moving.  In the past,

> over the years, I stayed active in the same way you do, doing a few

> minutes of this or that and resting, etc.  I also did charts to try

> to gradually increase my activity level, successfully.  Right now,

> the problem is a lack of nutrition.  Even with enough calories in

> liquids so that I don't even think I have lost much weight, I still

> don't have enough nutrition.  Too many carbs and sweets, and no

> protein or fat.  It really effects how I feel quite a lot.  This is

> definitely a problem I will have to solve somehow if I will be able

> stay physically active.

>

> Thank you so much for such a thorough and thoughtful post.  Sounds

> like you are doing a very good job of taking care of yourself.  I

> hope it continues to keep you going for a looonnng while. 

>

> Thanks Sunny,

> :-)

> Adam

>

>

>

>

>

>

> > Hi, Adam

> >

> > I read almost all the posts, and write occasionally only, when I

> think

> > I might have something to add.  Mostly, though, I am just amazed at

> the

> > knowledge and patience and kindness that I find at this site, and

> feel

> > that I can't contribute much.  So many people have so much more

> > knowledge and wisdom that I do.

> >

> > I do want to tell you, write here as much as you are able. People

> are

> > always accepting.  Do not worry about that.

> >

> > I do want to tell you that low blood pressure can be a huge problem

> > that you need to investigate.  I do not suffer from it personally,

> but

> > have a close friend (probably mito) who does.  It can go by several

> > different names.  This is from her experience. There is not much

> > medical treatment for it, as far as prescription drugs, and some

> meds 

> > make the problem worse. There is one med that she takes sometimes.

> Many

> > docs dismiss it.  A tilt table test can identify it,  It can be

> part of

> > mito, they think, because blood pressure regulation is part of the

> > autonomic nervous system, which can also show as problems with

> > temeprature regulation and dysmotility, among others. Be sure you

> do

> > not take any meds that have a lowering of BP as a side affect. That

> can

> > also go for herbs, etc.

> >

> > My friend has seen an expert in this area, in Toledo.  She feels

> that

> > understanding/knowing what the problem is, and knowing how to

> minimize

> > it has helped her a lot.  My friend has tachychardia along with her

> > dizzy spells and drop in BP. Do you get that too?  She can usually

> feel

> > the spells coming on, and and avoids falling down by sitting/lying

> > down.  She feels that if she contracts her big muscles

> isometrically

> > that this sometimes helps. (Isometric muscle exercise generally

> raised

> > BP for anyone, and should therefore be avoided by people with

> > hypertension - my problem) She feels that keeping hydrated,

> especially

> > with salt/sugar (like gatoraide) helps.  She takes licorish (sp??) 

> in

> > some form (can raise BP), and watches that she eats/drinks

> regularly.

> > She feels that mixing cabs with protein % fat is the best for her.

> She

> > also feels that keeping active when she can do it has helped her,

> and

> > even lifts some mild weights to keep her muscle tone when she can. 

> > There is one med, and only one med, that they say helps.  I did

> forget

> > it, because I did not need to use it.  But, the specialist would

> need

> > to do that of course. I can try to find the name of the med if 

> > you/anyone would like to know.

> >

> > Getting this evaluated by a doctor who knows about this is most

> > important.  The more you can tell him when you go the better. What

> is

> > your usual BP?  Do you know how to take your own pressure?  Try to

> take

> > it at various times of day, etc.  Try to see when it drops.  Keep a

> log

> > over time.

> >

> > Nutrition in general, especially fluids with the electrolytes is

> also

> > very important. I do not have experience with needing IV's or other

> > nutritional helps, but maybe that can be a short term boost  for

> you.

> >

> > Now a thought from me.  This is only MY personal experience, and my

> not

> > apply to many other people with mito.  In thinking back over the

> last

> > 20 years, I am TOTALLY convinced that I need movement and exercise

> to

> > get better.  After two major surgeries I had a terrible time

> > recovering. Res, rest, rest they told me.   True, I needed to rest,

> but

> > I am convinced that i rested too much. I now believe that I also

> > benefit from being active (including my much touted weight lifting -

> i

> > know some are tired of hearing about it).  Finding that magic

> balance

> > between rest and pushing myself is the key for me.  Instead of

> napping

> > during the day, I take constant short rests (many times at the

> > computer).  I wash 2 windows, sit and rest.  I do the dishes, sit

> and

> > rest. Cut some vegetables, rest........Up and down. All day long. 

> I am

> > convinced that pushing myself then resting has helped me.

> >

> > Adam, keep in mind that your surgery took a lot out of you, and

> your

> > nutritional limitation further challenges your body.  For you right

> > now, Adam, it might mean only one minute standing brushing your

> teeth,

> > then sitting/lying down again.  One minute up, then resting.  My

> > thought is to try it that way,  being active briefly as frequently

> as

> > you can. Medicine in general has now discovered that. They get

> people

> > up from really MAJOR surgeries, if possilbe, as soon as they can.

> > Movement does the body so much good, IF we can tolerate it. Only

> you

> > know what you can tolerate.

> >

> > Fiinally, Adam,  try to look at this as another challenge that you

> can

> > overcome.  Try to be patient with your condition right now, and do

> all

> > the things that make sense to you,  all the ideas that speak to how

> > your body is feeling.   Have hope that your body can heal, adapt. 

> Give

> > it the nutrition, rest, and movement that you are able.  Get the

> best

> > medical advice that you can.  the belief that the body has a

> tremendous

> > ability to adapt and heal has kept me going through some really

> rough

> > times. The believe that I must adapt my activity to what feels

> right

> > for me has been a further key.

> >

> > Warm wishes that you will stay hopeful and see improvement over

> time.

> > Hugs, Adam

> >

> > Sunny

> >

> >

>

>

>

>

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