Raising blood pressure

[creekland]

There's a lot online about lowering blood pressure - tons.  There's not so much about how to raise it, except, I suppose, doing the opposite of what the lowering sites talk about.  Caffeine, salt, etc.

 

I've seen the "keep hydrated" bit.  Are there other things to try, esp if BP tends to go down with exercise rather than increasing?  (Still testing this part - it's not a given just yet - but if there's something simple like staying hydrated that ought to be part of the test, it'd be helpful to know.)

[jenn-]

Are you measuring your bp as you exercise or does it plummet when you are done? Is your bp normally low even when not exercising?

 

I have naturally low bp (95/55 is normal for me resting). I have to be very careful with certain moves at TKD because going from low to high (burpees) will put me down. I intentionally eat more salty foods such as salted nuts. I do believe it helps to some degrees. Getting my asthma in check has also helped with the lightheadedness while working out.

[Alice]

Generally water/hydration and salt. 

 

You could look into POTS. Not saying that's what you have, but the things people do who have it might help you also. 

[wintermom]

Do you want to attempt to raise your bp or live with lower bp safely? I've got low bp, which went even lower with my pregnancies. I never received medical advice to try and raise it, just suggestions on how to avoid passing out, etc.  Are you experiencing ill health because of low bp?

[creekland]

Are you measuring your bp as you exercise or does it plummet when you are done? Is your bp normally low even when not exercising?

 

I have naturally low bp (95/55 is normal for me resting). I have to be very careful with certain moves at TKD because going from low to high (burpees) will put me down. I intentionally eat more salty foods such as salted nuts. I do believe it helps to some degrees. Getting my asthma in check has also helped with the lightheadedness while working out.

 

I'm not really sure exactly what's going on yet.  I know I started testing my bp more thoroughly to be certain it was only high at doctor appts as I had thought.  That's mostly true, but what I didn't expect to find were some pretty low tests (similar to what's normal for you, but can get down into the 40s too).  Those lower points often (not always) correlate to certain (pain) issues I have.  They correlate often enough for me to predict readings fairly accurately, so I suspect it gets low while doing some harder stuff (like carrying pony water buckets or more intensive hiking).  If I stop, it'll bounce back in about half an hour or so.

 

Normal, for me, appears to be in the 100-110s/60-70s.  That's what the readings are when I'm feeling fine and when I'm on my feet (in general) or even sitting and feeling fine.

 

Sitting and feeling bad can correlate with higher than normal or lower than normal - not sure exactly of that correlation yet, but I've only started paying closer attention for a couple of weeks now.

 

Just to add another dimension, I was cleaning off our dump everything here spot table earlier today and my left hand got really numb when using it (something that started back in Oct, so not new, but I'd never tested bp when it happens before).  It gets numb all the time when I'm not using it (as does the right and feet, etc - all weird stuff, but those don't affect bp - already tested that).  I expected to see low or normal bp with this newer numbness too, but instead it was 125/95 in the left arm, so kinda high by comparison.  Stopping the activity returned everything to normal in 15 - 20 min, but that's more I'll have to investigate I suppose.

 

And since I'm working to try to figure this out, I didn't want something obvious (like hydration) to be the "duh" common denominator.  It's possible as I rarely get thirsty, so it's something I need to actively think about.

 

Generally water/hydration and salt. 

 

You could look into POTS. Not saying that's what you have, but the things people do who have it might help you also. 

 

POTS (looked it up) is definitely not an issue.  The pulse rate stays right where it should in the 60s - 70s regardless of the bp.  It can go higher briefly, but not unexpectedly and certainly not higher than 80s.

 

Extra salt is a requirement in my life to avoid severe headaches.  Measured Na levels are still close to the bottom of normal, but improving as I add salt.  Adding more water is something I've just started.  I don't think there was a dehydration issue before, but who knows?  Time will tell.

 

In general, staying on my feet and "puttering" (or teaching) almost always guarantees feeling ok.  I've yet to figure out what's different with that "almost" bit.  I wish I could.

 

Sitting for too long almost always guarantees not feeling good too.  That's ok (most of the time) as I don't mind the motivation to keep active.  It is an issue when I have to stay sitting (like car trips).

 

Getting too active had better not be a problem.  Feeling bad with activity is a mental challenge as these things are part of my life normally - around the farm, hikes etc.  Hopefully it's just a "get back into shape" or "stay hydrated" thing (though no muscles or joints complain).

 

I'll be taking a break from checking things out while we're gone over Thanksgiving, but then can get back into it in Dec as I'm giving myself a little break from school while my boys are home from college.

 

Tips to check out then or things to watch out for like hydration (from anyone) are welcome.

[creekland]

Do you want to attempt to raise your bp or live with lower bp safely? I've got low bp, which went even lower with my pregnancies. I never received medical advice to try and raise it, just suggestions on how to avoid passing out, etc.  Are you experiencing ill health because of low bp?

 

I've no idea at this point.  If low bp correlates with not being able to do all the stuff I'm used to doing around the farm and hiking, then I definitely want to raise it.  I've no plans to stop doing my usual stuff and it'd be nice to not have health stuff as a frustrating side effect.  It never used to be that way.  If I project back, this could have started in July or August, but then again, those are hotter months, so perhaps hydration was an issue?

 

It shouldn't have been today though, but a couple of data points don't give me much to go on.  It did get me wondering if anything else could be similar to hydration - lacking a mineral or something.  Google wasn't much help.  The Hive knows a bit.  ;)

[Arcadia]

Blood circulation issues? My blood pressure is usually low as in 80/50 and is worse when anaemic. However I had numbness and a pale face even with normal haemoglobin counts which is why my doctor thinks it is blood circulation rather than anaemic.

 

Caffeine never raised my blood pressure and I drank caffeine since young :lol:

[ktgrok]

If pain triggers it it could be a vagal reaction. 

[creekland]

Blood circulation issues? My blood pressure is usually low as in 80/50 and is worse when anaemic. However I had numbness and a pale face even with normal haemoglobin counts which is why my doctor thinks it is blood circulation rather than anaemic.

 

Caffeine never raised my blood pressure and I drank caffeine since young :lol:

 

'Tis possible it's a circulation issue as that would fit other mysterious happenings, but I still prefer to make sure it's not something easily fixable by small changes here before heading down that route.  Circulation issues for the other stuff isn't a given either.  No anemic readings or off blood numbers as of Sept, so those are unlikely.

 

I'm not sure how or if caffeine affects my bp.  I know it helps me stay awake/warmer when I'm feeling tired/cold, but I haven't had a chance to check any of those out together with bp yet.  I just mentioned it as a possibility since cutting back on it was given as a suggestion for those wanting to lower bp.

 

If pain triggers it it could be a vagal reaction. 

 

It never occurred to me that pain could trigger it - only the other way around - pain coming from it.  Interesting idea and one I should be able to check out in Dec (after the holiday weekend) when I go back to doing more and see what happens (which comes first).  There's absolutely no significant change in pulse rate.  Pulse increases as it should (and not more than it should) with exercise.  It decreases as it should when exercise stops (or general resting).  Nothing low.  Nothing high.  

 

I've never been close to fainting from this either - just some rather intense pain at times (back of head, below skull).  The pain will linger long after the bp gets back to normal, but not as intensely.  The pain never seems to correlate with high bp (the very few times it's high), just low or normal after low, but again, I only have a couple of weeks of data points in general so far (since I never realized this might be an issue) and even then I have only tested "doing more" a couple of times since I don't want to do that at times I'm not willing to put up with the after effects of the pain lingering.

 

Overall, I'm never hungry (likely side effect from radiation) and eat less (to lose weight).  I don't get thirsty often either, but try to drink enough to not ruin kidneys, etc.  

 

My main goal at this point is to try to make sure I'm not missing "something" (water, minerals, etc) causing this and/or to see if there are common denominators otherwise (it always/never happens when...)  I'm not really sure if it's a true problem, or one I created (via diet or being out of shape, etc) and can fix.

Edited November 26, 2015 by creekland

[ktgrok]

Dehydration certainly can cause low blood pressure. I can't figure how low blood pressure could cause pain though. But some people react to pain/stress/etc with a vagal reaction and that can drop your blood pressure. 

[ktgrok]

Hmm, seems a noxious stimulus (like pain) can cause it, or injury to the spine, which would correlate with your numbness/tingling. You really need to get to a good chiropracter. 

 

http://www.emedicinehealth.com/low_blood_pressure/page5_em.htm

[trulycrabby]

You're not taking any beta blockers are you?

 

I am tired and didn't read your posts twice to see if I'm missing anything, but my first impression is,that your symptoms sound similar to my mom's before she got a pacemaker.

 

Pseudoephedrine is known to raise blood pressure.

[nevergiveup]

Sorry, I don't know your history.

Some supplements can cause low blood pressure/ heart rate.  Can't remember which one I was taking, but my resting heartrate was low 40s.

When I took St. John's Wort, I had numbness in my hands.

[Laurie4b]

With all those symptoms, I would go to a doctor. 

[Lanny]

Years ago, I believe for several years, I had Low Blood Pressure. The doctor I went to also had (or had in the past) that problem. He told me it was dangerous, because if there is an emergency and those giving medical care (ambulance, E.R., etc.) do not know that the patient has Low Blood Pressure, they might take heroic measures that are not necessary. For several years, I wrote a "Medic Alert" bracelet that said I had Low Blood Pressure. GL

[creekland]

Sorry, I don't know your history.

Some supplements can cause low blood pressure/ heart rate.  Can't remember which one I was taking, but my resting heartrate was low 40s.

When I took St. John's Wort, I had numbness in my hands.

 

The only things I take regularly are a multi vitamin and turmeric.  For certain headaches I'll add ibuprofen, but that's certainly not everyday.

 

With all those symptoms, I would go to a doctor. 

 

I'd like to actually figure out if it's a problem first.  Today's been quite a good day in spite of what I thought would happen due to lack of motion.

 

On good days I'll admit I don't worry about it at all and just assume all will be well.  ;)

 

(No bp readings today due to travel, etc, but nothing feels like it would be bad.)

 

 

Years ago, I believe for several years, I had Low Blood Pressure. The doctor I went to also had (or had in the past) that problem. He told me it was dangerous, because if there is an emergency and those giving medical care (ambulance, E.R., etc.) do not know that the patient has Low Blood Pressure, they might take heroic measures that are not necessary. For several years, I wrote a "Medic Alert" bracelet that said I had Low Blood Pressure. GL

 

The majority of readings I get are decently into the normal range, so I don't know that I'd say I have low bp.  There have just been some low readings that have me wondering if life has always been that way or if it's something new and related to other stuff going on (or if it's new and brought on by diet, etc).

 

Any doctor visit will be high.  I don't like those and even if I try to pretend all is ok, my bp tends to speak on its own.  The whole reason I found this anomaly is I wanted to double check that readings were only high at office visits - not everyday or at other semi-stressful times.  After a few unexpected low readings, I've started to check different times to see if symptoms and bp are correlated.  Most aren't.  Some might be.  I haven't checked much yet due to full time work.  That part is done, so after this trip I'll have more time to try to figure the puzzle out.  

 

Of course, if this good day actually does lead to other good days and no more bad ones, problem solved!  If that bodes true, the answer was probably eating way too much at a Thanksgiving buffet - way, way too much.  Everything else about the day has happened before without success.  Still, I don't really care what the answer is as long as it works...

[Tiramisu]

POTS and a vagal reaction were already mentioned, and I think it couldn't hurt to continue to look along the dysautonomia spectrum even if you don't have the heart rate changes of POTS. I have a POTSy dysautonomia. I have one dd with vasovagal syncope. She's only fainted once but she has weird days were things don't seem to be working right with her when she gets very tired and can't seem to speak very fluently. Another dd was just diagnosed with inappropriate sinus tachycardia, which my cardiologist says is on the same dysautonomia spectrum. I really think my oldest dd has something like this, too. She has pain and has had really weird low blood pressure. She also can get really lightheaded.

 

Some type of dysautonomia sounds like what you are describing and as I've seen in my family, it can have such different presentations. There are medications that can help to raise blood pressure in POTS that can be used to raise blood pressure in other similar conditions. Besides increasing fluids and salt on your own, you could try compression stockings. Since you have problems when sitting down, you may want to do some leg exercises while you are sitting down to prevent the blood from pooling. Pooling blood in the lower extremities is exactly what can trigger dysautomonic issues, usually in POTS and orthostatic hypotension that comes from standing but I think it could also come from sitting if your blood isn't circulating back to your heart and brain freely from your legs.

 

You may also want to look through a list of conditions that should be ruled out before a dysautonomia diagnosis is given. There could be something else going on or some aspect of your medical history influencing things now. 

[creekland]

POTS and a vagal reaction were already mentioned, and I think it couldn't hurt to continue to look along the dysautonomia spectrum even if you don't have the heart rate changes of POTS. I have a POTSy dysautonomia. I have one dd with vasovagal syncope. She's only fainted once but she has weird days were things don't seem to be working right with her when she gets very tired and can't seem to speak very fluently. Another dd was just diagnosed with inappropriate sinus tachycardia, which my cardiologist says is on the same dysautonomia spectrum. I really think my oldest dd has something like this, too. She has pain and has had really weird low blood pressure. She also can get really lightheaded.

 

Some type of dysautonomia sounds like what you are describing and as I've seen in my family, it can have such different presentations. There are medications that can help to raise blood pressure in POTS that can be used to raise blood pressure in other similar conditions. Besides increasing fluids and salt on your own, you could try compression stockings. Since you have problems when sitting down, you may want to do some leg exercises while you are sitting down to prevent the blood from pooling. Pooling blood in the lower extremities is exactly what can trigger dysautomonic issues, usually in POTS and orthostatic hypotension that comes from standing but I think it could also come from sitting if your blood isn't circulating back to your heart and brain freely from your legs.

 

You may also want to look through a list of conditions that should be ruled out before a dysautonomia diagnosis is given. There could be something else going on or some aspect of your medical history influencing things now. 

 

Dysautonomia spectrum - I'll freely admit that one is going to take some googling to have even a basic understanding of what you're talking about.

 

Today is not that day, but sooner or later I'll get around to it.  Today is a day I'm both enjoying playing games, etc, with my family and getting incredibly pissed off that all sorts of (health issue) crap is coming back.

 

Honestly, that's typical.  The whole darn thing is cyclical.  Bad days are followed by good ones (albeit the good ones still aren't normal - they're just better than the bad ones), then it'll build up again.  I get hopeful during the good ones, then get those thoughts dashed when it all starts again and/or new stuff happens.  It gets wearisome and my instinct is to forget/chuck the whole darn thing allowing whatever happens to happen.

 

It's not as if I haven't tried getting others (more knowledgeable than I) to figure it out.  I started mentioning it a little over a couple of years ago - adding as new things come.

 

It's just that no one has found answers and it's all supposedly due to stress.  The possibility of low bp being part of it is new at the moment.  I'm not sure if it's 100% new to my life.  I need to figure out if it truly is worth mentioning/considering or if it's just another "stress" deal when it turns out to be nothing.

 

Check out adrenal fatigue.  I have low blood pressure and just found out I have stage 3 AF.

 

This likely isn't it as I'm totally missing the fatigue part.  There are specific things that aren't right.  Anything not on that list is just fine, well, until more progression adds something to the list, but fatigue isn't there (yet).

[Joyofsixreboot]

Years ago, I believe for several years, I had Low Blood Pressure. The doctor I went to also had (or had in the past) that problem. He told me it was dangerous, because if there is an emergency and those giving medical care (ambulance, E.R., etc.) do not know that the patient has Low Blood Pressure, they might take heroic measures that are not necessary. For several years, I wrote a "Medic Alert" bracelet that said I had Low Blood Pressure. GL

Hmm, I have a resting heart rate of 42 and low blood pressure. My MD never mentioned a bracelet but...maybe that's not a bad idea.

[gardenmom5]

Dehydration certainly can cause low blood pressure. I can't figure how low blood pressure could cause pain though. But some people react to pain/stress/etc with a vagal reaction and that can drop your blood pressure. 

 

I used to have much lower bp than I do now.  normal was 90/60. I increased salt intake, and drank more water and it increased.  however - the only pain I had associated with that bp were headches from constant dehydration.

 

OP - the fact you have pain associated - wether the pain is the trigger, or the low bp triggers the pain - is something I would strongly encourage you to go report and check out with your dr.

[Mommy22alyns]

Hmm, I have a resting heart rate of 42 and low blood pressure. My MD never mentioned a bracelet but...maybe that's not a bad idea.

 

 

I've never heard of the bracelet either.  My HR isn't nearly that low, but my BP has always been low.

[Tiramisu]

Dysautonomia spectrum - I'll freely admit that one is going to take some googling to have even a basic understanding of what you're talking about.

 

Today is not that day, but sooner or later I'll get around to it.  Today is a day I'm both enjoying playing games, etc, with my family and getting incredibly pissed off that all sorts of (health issue) crap is coming back.

 

Honestly, that's typical.  The whole darn thing is cyclical.  Bad days are followed by good ones (albeit the good ones still aren't normal - they're just better than the bad ones), then it'll build up again.  I get hopeful during the good ones, then get those thoughts dashed when it all starts again and/or new stuff happens.  It gets wearisome and my instinct is to forget/chuck the whole darn thing allowing whatever happens to happen.

 

It's not as if I haven't tried getting others (more knowledgeable than I) to figure it out.  I started mentioning it a little over a couple of years ago - adding as new things come.

 

It's just that no one has found answers and it's all supposedly due to stress.  The possibility of low bp being part of it is new at the moment.  I'm not sure if it's 100% new to my life.  I need to figure out if it truly is worth mentioning/considering or if it's just another "stress" deal when it turns out to be nothing.

 

 

This likely isn't it as I'm totally missing the fatigue part.  There are specific things that aren't right.  Anything not on that list is just fine, well, until more progression adds something to the list, but fatigue isn't there (yet).

 

Dysautonomia just means your autonomic nervous system is out of whack. Heart rate and bp are two common ways it can manifest. The body is a fine tuned machine that coordinates multiple adjustments by the second to stay in balance, and some of us, for whatever reason, are not really good at it. Besides the common issues with heart rate and/pr blood pressure, sometimes people have GI problems of various kinds or issues with urinating, like going too much. Dehydration, lack of sleep, illness, surgery or any other kind of stress are common triggers to mess things up. With good habits, sometimes people can help get their bodies in a better state, but inevitably things can happen to knock it off balance again. However, if you can learn your triggers and what you need to do to maintain yourself in a good state, you have a better chance of recovering more quickly than you otherwise would.

 

If you are thinking about going to a doctor, you may want to invest some time in one who is familiar with autonomic dysfunction. I know their are neurologists out there who specialize in this, but the doctors I know who deal with it are electrophysiologists (cardiologists who deal with irregular heart rhythms). I'm not really sure what would be best if it's blood pressure. Before I found went to an electrophysiologist, I saw a few different cardiologists. One realized it was a blood volume issue exacerbated by pregnancy but he others tried to tell me it was anxiety. Finally, I got fed up with that explanation because I knew what anxiety was and knew I didn't have it for thirteen years straight, and my problem didn't go away when I had my last baby. When a cardiology nurse saw my blood pressure and heart rate variability when I was on a monitor, she told me not to waste my time going back to a regular cardiologist and recommended the electrophysiologist in the practice. He was able to tell me right away what was going on and it relieved a lot of stress.

 

If you see doctors at Johns Hopkins, you may want to contact the office of Dr. Peter Rowe and see if they can recommend a doctor who see adults who have problems with low blood pressure.

[Tiramisu]

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

Interestingly, this mentions problems caused by sitting too long, as well as muscle aches. It includes a good summary of the physiology and some helpful tips.

[Tiramisu]

And about activity and feeling good versus feeling bad, keeping active is good but you can't over do it. My dd's doctor described it well when he said it's important to force yourself to get exercise when you're feeling bad and to make sure you don't exercise too much when you're feeling good. 

 

Exercise changed my life but I had to start out very slowly, and before I really figured it out, I caused many bad days by trying to do too much when I thought I could manage it.

[Paige]

My MIL has issues w/ low blood pressure and takes something for it. I don't know what she takes, but she checks it several times a day. You could keep a diary for a week or so to give your doctor a better idea of if it's worth intervening.

[creekland]

I used to have much lower bp than I do now.  normal was 90/60. I increased salt intake, and drank more water and it increased.  however - the only pain I had associated with that bp were headches from constant dehydration.

 

OP - the fact you have pain associated - wether the pain is the trigger, or the low bp triggers the pain - is something I would strongly encourage you to go report and check out with your dr.

 

The pain part has already been reported to more than one doctor.  What I still don't know is if the pain is always correlated to the bp change or not.  It's not always there.  It's cyclical and triggers I think might be involved don't seem to be 100%.  I will try to figure out more at home in Dec.

 

More common pain/issues do not seem to be related to bp.  Those have been easier to test as they are around more often.

 

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

Interestingly, this mentions problems caused by sitting too long, as well as muscle aches. It includes a good summary of the physiology and some helpful tips.

 

Having read a bit of this this morning, it's not sounding all that likely to be honest.  There's rarely any sort of fatigue (esp unexplained from other causes), and essentially never any lightheadedness.  Then there's absolutely never any vision issues from it.  Couple all that with standing being better than sitting or lying down. (Never tested bp lying down...)  Then there's the fact that with known stress (like doctor visits) bp goes up, not down.  It's never been an issue at any medical deal - often closer to normal (though still a little high) at tests or with the carpal surgeries, etc.  It gets its highest at doctor visits, esp if I end up waiting for them.

 

My best guess for it all is something causing swelling in the lower back of the head, then that swelling affecting both certain nerves and/or blood vessels.  Why there?  That's where it can be painful (at times rivaling the pain from the carpal surgery, but again, that's not all the time) and that's where nerves need to pass through from the head to the body.  No neck movement or OTC pain meds make this better (or worse).  I just get to deal with it until it goes away.  Actually, walking can sometimes help, so I often try it.  Sleeping can sometimes help too.

 

Why swelling?  It comes and goes.  We know there's no tumor there and the tumor I have doesn't affect anything there.  Tumor issues wouldn't come and go either.

 

I also can't sit with my head back against an armchair or pillow (or lie down on my back with my head straight up).  Pain from that can come in seconds or sometimes up to 15 minutes or so (varies).  Force myself to stay there longer and I definitely get tired.  It will cause me to fall asleep.  I use it sometimes to fall asleep when I want more sleep.

 

Some sort of fluid seems likely.  When it builds behind my left ear I can feel it release and drip.  That's a shaky correlation though as it doesn't match the pain.  The ear part also started 100% after radiation.  The rest started before it.  The two could be totally different.

 

The hands/feet getting numb when still is constant, so I'm not even sure if that's part of the cyclical deal.  That's easy to live with though as I just need to keep them moving.  It's really only annoying at night or when I'm in situations when I can't move.  Even sitting and playing cards isn't bad as I automatically keep my feet moving - fidgeting - without thinking about it at all.

 

What's annoying now is that my left hand often (and right hand once in a while) are starting to get numb even when I'm moving them.  That's also not connected to the back of the head pain, so ???  The one time it was bad and I checked it with bp, the bp was high, not low (127/96 - give or take my memory - it was the bottom number that was a bit higher).  This numbness only started the beginning of Oct (though I do recall it on rare occasions as early as this past summer), but I really don't like the way it's progressing.

 

Longer walks now also seem to produce issues (painful swelling on the back of my hands - not fingers - back of hands).  Doing more intensive chores on the farm might lead to that - and the head pain - too.  All of this is also new (if it correlates - if it's constantly there).  In Dec I've left my school schedule free.  I'll get back outside doing chores and going back to our (what used to be fairly normal) 4 mile walks and see if anything is really there or not, and if so, if it has any sort of correlation with the bp.

 

Being reminded by my body to keep busy is annoying, but "such is life."  

 

Being told by my body that it can't do typical things it used to do is going to cause a war between my mental and physical selves.  So... I'm hoping maybe it's sort of an out of shape thing, and if there's anything simple to "fix" it (like drinking more water or keeping up on additional salt), all the better.

 

Far more than I intended to write... but perhaps it's helpful to explain more.  Then too, if there are simple fixes from anyone who has BTDT...

 

Three different doctors have told me they're stumped.  To be totally fair, the newest stuff, some additional swelling (not mentioned here), and the potential for low bp being another variable issue are not yet on their radar, but then again, considering it's all "stress" I don't know that I plan to add it to their radar unless I'm sure they are issues.  Otherwise, it's just more fodder from the "overstressed" crazy lady.  It might be even if I end up convinced of it.  If so, that will end my relationship with doctors... until middle son either graduates from med school or gives me a recommendation of someone he trusts.

 

I fully get that doctors are human and don't have a crystal ball (or script) to figure everything out.  It actually makes me feel a little better that it hasn't been simple ('cause I'd feel really dumb that I couldn't figure it out myself).  But if "the answer" is only to reduce stress... cutting out the doctor visits is the first step.  That and the actual medical issues are the only stressors in my life.  I'm working on figuring out how to fix (or live with) the latter. 

[Jasperstone]

I haven't read the responses, but I know liquorice does.

 

Either in tea or herb concoction form. I don't think the candy form would have much in it etc.... Bummer!

[ktgrok]

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

Interestingly, this mentions problems caused by sitting too long, as well as muscle aches. It includes a good summary of the physiology and some helpful tips.

 

Wow, that was really helpful. I have a lot of those symptoms, and issues with vagal reactions. Especially after eating, which they listed. And yes, when it's bad (after say, dental work or blood draws, anything painful or emotionally exhausting) it lasts for a full day, with just the symptoms listed (headach, feeling foggy, etc.) It happens after I give birth as well, but was better last time. Coincidentally (or not) I stayed flat on my back for several minutes after giving birth last time. I also find that a small amount of strong alcohol, like a sip or two of scotch or whiskey, helps. I'll have to research if there is a reason that might be related. But wow, so very very accurate for me. 

 

Oh, and I get the aching in my legs that FEELS like the blood is pooling....but only when pregnant or having PMS. It's very related to my cycle. Crazy. 

 

Oh, and I DO many of the postures they say people with this adopt! And the heat does this to me too, especially when I'm not getting enough fluid (like after my surgery). I knew I wasn't dehydrated enough to be sick from it, but would get lightheaded, exhausted, and foggy. Crazy.

Edited November 28, 2015 by ktgrok

[creekland]

Have you made sure you are getting adequate nutrition and water daily?

 

On vacation?  I'll have to confess that we don't worry at all about nutrition.  It's all about taste and eating what we want when we travel.  Here visiting my hometown it's all about old favorites, so unless typical Thanksgiving foods, fried chicken, subs, and fish & chips count... nutrition is likely to be a wee bit off.

 

At home I'm much better with it (choices and quantity).  When we travel I can easily add a lb per day.  At home it'll all be off in a week or so though.

 

Water?  I think it's been ok to be honest, but just in case, I've upped it.  I'll admit to hoping that's the answer.

 

I haven't read the responses, but I know liquorice does.

 

Either in tea or herb concoction form. I don't think the candy form would have much in it etc.... Bummer!

 

Licorice isn't exactly a flavor I like.  (sigh)  

 

Wow, that was really helpful. I have a lot of those symptoms, and issues with vagal reactions. Especially after eating, which they listed. And yes, when it's bad (after say, dental work or blood draws, anything painful or emotionally exhausting) it lasts for a full day, with just the symptoms listed (headach, feeling foggy, etc.) It happens after I give birth as well, but was better last time. Coincidentally (or not) I stayed flat on my back for several minutes after giving birth last time. I also find that a small amount of strong alcohol, like a sip or two of scotch or whiskey, helps. I'll have to research if there is a reason that might be related. But wow, so very very accurate for me. 

 

Oh, and I get the aching in my legs that FEELS like the blood is pooling....but only when pregnant or having PMS. It's very related to my cycle. Crazy. 

 

Oh, and I DO many of the postures they say people with this adopt! And the heat does this to me too, especially when I'm not getting enough fluid (like after my surgery). I knew I wasn't dehydrated enough to be sick from it, but would get lightheaded, exhausted, and foggy. Crazy.

 

Glad you posted this as it makes me definitely think that's not what I'm dealing with.  There really wasn't anything on that page I could relate to.

 

Lately I've been wondering if lymph issues could be part of it all, so will research that one more at home.  I think that's where the recent (known) swellings have been occurring, so if others are also swelling and pushing on nerves, it could potentially explain something, or at least it seems like it's plausible for those of us who have to learn everything new once we're introduced to it.

 

Regardless, if I could just figure out triggers and how to avoid issues, I'd be quite happy.  Yesterday wasn't a good day.  Today was decent due to far more bearable variable symptoms when anything felt amiss and I'm used to the constant stuff, so that's ok.  I'm even getting use to the left hand being numb more often, so I suppose that's livable too.  Both days had roughly the same amount of (lack of) movement and very similar activities.  Neither had anything different with food (not really anyway). Why the difference?

 

It's the same way (variable) at home, at school, & when traveling.  Weather doesn't make a difference either.  What gives?  :glare:

 

Sooner or later I'll figure it out - or perhaps I'll find the kid with the voodoo doll and confiscate it.

[creekland]

I think, in your situation, I would try methylcobalimin (vit b12). That may be helpful with the numbing, and its far cheaper to try than do all the testing. Being water soluble, there is no upper daily limit, so very safe. Shop rite has the nature's bounty brand for $5-10 for 60.

 

Tests for this all come out fine, but since my body apparently has a huge aversion to being normal, it could easily be worth a try.

 

I have no words of wisdom, only sympathy!!  I'm sorry you cannot get this figured out.  Having health problems is rough.

 

Thanks.  As mentioned somewhere upthread, I'll freely admit the health issues cause me stress.  It's just not the other way around.  If I can eliminate or ignore the health issues... well, that's my goal.

 

So far today is starting out good though.  That's a plus.  Only the constant stuff is around at the moment (as long as I move left hand partial numbness when moving into the constant column - it's not totally there yet, but close enough).

[Tiramisu]

Wow, that was really helpful. I have a lot of those symptoms, and issues with vagal reactions. Especially after eating, which they listed. And yes, when it's bad (after say, dental work or blood draws, anything painful or emotionally exhausting) it lasts for a full day, with just the symptoms listed (headach, feeling foggy, etc.) It happens after I give birth as well, but was better last time. Coincidentally (or not) I stayed flat on my back for several minutes after giving birth last time. I also find that a small amount of strong alcohol, like a sip or two of scotch or whiskey, helps. I'll have to research if there is a reason that might be related. But wow, so very very accurate for me. 

 

Oh, and I get the aching in my legs that FEELS like the blood is pooling....but only when pregnant or having PMS. It's very related to my cycle. Crazy. 

 

Oh, and I DO many of the postures they say people with this adopt! And the heat does this to me too, especially when I'm not getting enough fluid (like after my surgery). I knew I wasn't dehydrated enough to be sick from it, but would get lightheaded, exhausted, and foggy. Crazy.

 

Well, I'm sorry I couldn't help creekland, but at least she could rule something out.

 

The only time I remember my heart rate being consistently stable was in the weeks after childbirth when my blood volume was still high to accommodate the baby but there was no baby. I had all that extra blood circulating through my system and my heart rate was 60 no matter what I did.

 

My worst times have been in early in pregnancy when I hadn't yet built up blood volume. Combined with getting dehydrated with morning sickness, I would end up in the ER getting fluids and that made me feel immediately better.

 

I have had the after meals thing, too. And it helps to not eat meals that are too big because I'll also get irregular beats from that.

 

I'm sure hormones have something to do with it.  

 

My oldest dd used to get bad blood pooling; her legs would darken and look mottled when she stood. She's also developed enlarged blood vessels in her legs. I wish I knew more about this when she was in high school and feel weird, fatigued, and nauseous all the time. I haven't checked her legs recently but she has made an effort to drink more and seems better. But now she's on meds that can lower bp and I've wondered if the lowered bp is triggering a physiological response that's triggering feelings of anxiety because that's become a problem. Some studies have pointed out that people with dysautonomia have more anxiety symptoms but then another study showed that if you take out questions relating to physiological signs of anxiety (that the same symptoms caused by autonomic dysfunction), patients don't have anxiety problems.

 

I think you'll like this.

 

http://www.ipej.org/0602/raj.htm

[Lawana]

Have you been evaluated for Chiari malformation?

[ktgrok]

 

 

My worst times have been in early in pregnancy when I hadn't yet built up blood volume. Combined with getting dehydrated with morning sickness, I would end up in the ER getting fluids and that made me feel immediately better.

 

I have had the after meals thing, too. And it helps to not eat meals that are too big because I'll also get irregular beats from that.

 

I'm sure hormones have something to do with it.  

 

My oldest dd used to get bad blood pooling; her legs would darken and look mottled when she stood. She's also developed enlarged blood vessels in her legs. I wish I knew more about this when she was in high school and feel weird, fatigued, and nauseous all the time. I haven't checked her legs recently but she has made an effort to drink more and seems better. But now she's on meds that can lower bp and I've wondered if the lowered bp is triggering a physiological response that's triggering feelings of anxiety because that's become a problem. Some studies have pointed out that people with dysautonomia have more anxiety symptoms but then another study showed that if you take out questions relating to physiological signs of anxiety (that the same symptoms caused by autonomic dysfunction), patients don't have anxiety problems.

 

I think you'll like this.

 

http://www.ipej.org/0602/raj.htm

 

Yup, in fact the first pregnancy sign I get is lightheadedness. It's how I knew I was pregnant with myson, I was just sitting in my chair and got lightheaded. And immediately knew what the problem was. With my daughter's pregnancy I had to leave work a few times in the early days because I got so bad. I'd be sitting on the floor afraid to stand up. 

 

And funny you say that about anxiety....I VERY RARELY have anxiety feelings, but when I do it's when I'm low on fluid. And yes, I don't feel anxious as much as my body is acting like I'm anxious!

 

I was thinking about all this more last night, and it hit me this explains my issues after doctor appts. Even after say, a Pap smear, where there is little actual pain, no blood draws, etc, I will be foggy and exhausted for the rest of the day, at least 12 hours. I thought I was just a wuss. My mom is the same...bet I got it from her. And my sister has actually coded from a vagal episode after getting an IV. And passed out IN labor when she got out of the bed. She had a walking epidural despite them knowing she had a history of vagal reactions and low blood pressure, which lowered her pressure even more. Got up out of bed at their insistence, even though she knew she felt bad and ended up fainting on the toilet. 

 

I've never fully passed out, but when I used to try to give blood I'd start to after they took the needle out. Tunnel vision/can't hear, etc. They get me laying back down and had me cough, which helped. I thought it was low blood sugar or dehydration but no matter what it happens each time. I go totally white in the face too, lips are white, etc. And it lasts for hours. 

Edited November 29, 2015 by ktgrok

[creekland]

B12 is controversial. In other parts of the world, 500 or greater is the acceptable range from the simple blood test, but here in the US its much less. Its also possible to be in the zone on the simple test, but have issues that will show up on other tests. And not assuring an adequate intake daily can affect a person.

 

My normal tested rate was already over 500, but another test - different type - also confirmed all was well.  If I had more time, I'd look up the results of both again, but we're soon getting ready to play a "Winner Takes All" last game of Rook before we take middle son back to college.

 

Have you been evaluated for Chiari malformation?

 

I'm going to take a wild guess that if I have no idea what a Chiari malformation is, my answer is probably no.

 

Tomorrow at some point we'll be home, and after that, I'll have more google time.  Tonight we're staying with an aunt so I'm expecting to practice my social skills.  (Tomorrow morning I might have time as I'm always awake before the masses.)

 

Yup, in fact the first pregnancy sign I get is lightheadedness. It's how I knew I was pregnant with myson, I was just sitting in my chair and got lightheaded. And immediately knew what the problem was. With my daughter's pregnancy I had to leave work a few times in the early days because I got so bad. I'd be sitting on the floor afraid to stand up. 

 

And funny you say that about anxiety....I VERY RARELY have anxiety feelings, but when I do it's when I'm low on fluid. And yes, I don't feel anxious as much as my body is acting like I'm anxious!

 

I was thinking about all this more last night, and it hit me this explains my issues after doctor appts. Even after say, a Pap smear, where there is little actual pain, no blood draws, etc, I will be foggy and exhausted for the rest of the day, at least 12 hours. I thought I was just a wuss. My mom is the same...bet I got it from her. And my sister has actually coded from a vagal episode after getting an IV. And passed out IN labor when she got out of the bed. She had a walking epidural despite them knowing she had a history of vagal reactions and low blood pressure, which lowered her pressure even more. Got up out of bed at their insistence, even though she knew she felt bad and ended up fainting on the toilet. 

 

I've never fully passed out, but when I used to try to give blood I'd start to after they took the needle out. Tunnel vision/can't hear, etc. They get me laying back down and had me cough, which helped. I thought it was low blood sugar or dehydration but no matter what it happens each time. I go totally white in the face too, lips are white, etc. And it lasts for hours. 

 

Sending  :grouphug: on this one.  Your experience makes me glad this one isn't the answer I've been looking for, but it also makes me wish it weren't your answer too.

 

If I ever get to where I can't do all the things I'm used to doing (hiking, chores around the farm, etc), that's going to be some intense mental moments.  Right now I'm just assuming it's because I'm out of shape having been at school for the past 10 weeks, but the stuff that's been happening hasn't been sore muscles so once again, if it's merely being out of shape, it'll be unusual.  :glare:

 

Time will tell.  Barring weather issues, I'll start seeing what happens Dec 1st.

[creekland]

Today turned out to be a really good day too - totally unexpected considering my lack of movement the past few days (including today).

 

What has changed (again) is the amount of salt I've been eating (all those tasty comfort foods).  It makes me try to think of ways to keep that increased salt intake when at home and not eating out all the time.  If it works, it's worth it.  If not, I'll know soon enough.

[creekland]

Have you been evaluated for Chiari malformation?

 

Looked this up this morning.  Many (not all) of the symptoms are similar - eerily similar - but I honestly think if this had been the problem, it'd have been noted on one of the many MRIs or CT scans I've had (for the brain tumor and checking for pinched nerves).

 

It kinda makes me think my swelling idea is along the correct thinking line for some of it though and if salt keeps the swelling down... Maybe I'll have to be one of those who actually does fast food (or similar) daily to keep my health in check.  This might only work with less water though, not more.  Again, it's something I can test better once at home.

[ktgrok]

You can buy salt tablets to take. Endurance athletes use them. 

[creekland]

You can buy salt tablets to take. Endurance athletes use them. 

 

Good to know.  That will make it easier to test the theory.  Plus, if we increase, that will hurt hubby.  He already eats less than I do, but has higher numbers for Na in blood tests.  Tablets will make it easier for just me to try it and see what happens.

 

Comfort foods usually have fat, so fat soluble vitamins get delivered.

Nice to feel better.

 

Interesting other idea to try.  I have no idea which it is - if either - at the moment.  It also could be simply random and the fact that good days often follow bad ones for some totally unexplained reason. (Friday was semi-bad, but came after all of our eating on Thursday, so nothing is certain in my mind.)  

 

Now is not as good as this morning, but we've spent the whole day in the car and I had to test things by resting my head on a pillow this morning - just 'cause I could.  When that's happened before it leads to issues later, so again, who knows?  It only shows it's not 100% better with just increasing salt/fat, etc.

 

But really... all I need to do is be able to live with it, by finding where the lines get drawn.  Absolute cures might not be out there.

 

Now that I'm home I need to figure out what to test first - salt, fat?  I think I can do either while seeing what happens with more typical farm exercise (vs school exercise).  I've also been using significantly more caffeine (comes with sugar) to adjust my natural "awake" hours.  Normally I'd drop that (and pick up ibuprofen until the headache goes away).

 

Anyone have ideas?

[creekland]

Just closing this thread out with the conclusion that the whole thing still seems to be quite random and not necessarily dependent upon salt, unless it's really high levels of salt.  I'll admit to being a little bummed, but such is life.

 

It also seems like it's going to be a bit of a battle between physical and mental.  Today wasn't exactly a good day and I didn't do much to aggravate issues.  Time will tell what happens when I step things up - probably tomorrow (since the weather improves), definitely by Saturday.

 

That last bit is more of a vent than requesting any suggestions (obviously).

[Mommy22alyns]

Well, hang in there and keep us posted.  I hope you find some kind of solutions soon.   :grouphug:

[creekland]

Well, hang in there and keep us posted.  I hope you find some kind of solutions soon.   :grouphug:

 

Eh, I've either got to give up on this or it will drive me mad (on bad days anyway).  And on those bad days the body is either going to deal with it or not.  It'll have to figure that out.

 

I'll keep the water and salt/fat going - just in case it makes a difference.