yogini

My annual physical shows I have an elevated blood platelet count.  I read it can be a fluke, because of dehydration, but my doc showed me my old test results.  My platelet count has been slowly creeping up over time.  He said it  likely isn't dangerous, some people just have that.  He's going to re9do the test in Sept and if the count is the same or goes up he'll send me to a hematologist, who might test my bone marrow.  That doesn't sound like fun!  I searched on the forum and it seems a few others have posted to ask about this (although no one posted their outcome).  I wanted to check in to see if anyone else has this?

On 6/30/2019 at 10:05 PM, Scout said:

Indeed, it's normal to a degree. But it's not normal for it to shoot up dramatically like mine does.

Systolic BP rises quite a bit during exercise, and that's fine. But diastolic BP is meant to remain largely unchanged, or even drop slightly, during exercise. Mine skyrockets into sometimes hypertensive crisis levels.

Today, for example, after a lukewarm bath, I blacked out with severely high BP and slow, irregular heart rate. This isn't good or normal. 

Drs usually have cancellations, so maybe you could try to move up your appointment.  If you are blacking out, having irregular heartbeats and BP numbers which you think are hypertensive crisis (though I am not sure exercise is the right place to measure that, especially when it comes right down when you stop) it would probably be best to be seen sooner if you can manage it.  

Different diets work for different people, because there are many different causes of dysautonomia. Also, a lot of people have food sensitivities.  It really depends on what your symptoms are.

It is normal for blood pressure to increase during exercise.   It seems your BP is increasing within the normal range for exercise.

https://www.healthline.com/health/blood-pressure-after-exercise

 If your blood pressure increases, it enables the heart to slow down.  That is why so many POTS patients benefit from treatments to increase blood pressure (or blood volume).   

It is always good to get it checked out by your dr when you are having new symptoms but these symptoms you are having may not be dangerous.

I had a blackberry for work way back when before there was even an iPhone.  I hated it - felt like a slave to it.  So I have never really been into my phone --   I can go hours without looking at it, if needed. Overall I think it is a huge convenience.

What is your heart rate and blood pressure when you get the headaches?

I remember the days when I showered sitting down in the tub.  I didn't even have a shower chair.  it definitely feels great to be able to stand!  If you do it for a few times you'll get used to it and hopefully it will start to feel normal and you won't have to worry. 

Have you tried adding salt to your diet?  At my worst I used to drink a cup of broth every morning and night followed by lots of water.  I was able to retain lots of water that way.

Midodrine constricts your blood vessels, so it won't help retain water.   The beta blocker you are taking would lower blood pressure.  That might be a medication to reconsider with your doctor.

xSome of what you described with your family could be a miscommunication or them not understanding POTS.  Sometimes you have to ask or explain what you're able to do.  If your mom offers to take you to lunch at a casino, just suggest another place that you can go to.     BUT even if they don't understand dysautonomia, your family should've known send you food or ask what you need after a hip replacement.    Pretty much no excuse for that.  

Take care of yourself and don't feel guilty.  You make meals for your mom, that is enough.

On 6/3/2019 at 2:17 PM, Sarasw said:

Thank you @yogini . Do you think we adapt if we increase water consumption slowly over several days? I am limitimg it to 12 cups a day for now. I'm not sure if sodium consumption depletes potassium but I will try having only a little extra sodium and plenty of fruit and vegetables. I don't know if the headaches are from POTS, adrenaline or sodium or potassium depletion.

I think you'd be better able to figure out the right fluid level for yourself if you go slowly.

 A normal person would get winded when running and talking at the same time. With dysautonomia our bodies are often operating as if we are running even when we are sitting or lying down, so this isn't an unusual symptom.

Was it a difference in altitude?  Also I wonder if the different food made a difference.

Swimming and rowing are great exercises for dysautonomia. Also a recumbent bike can be easier than a regular bike.

If you want medical compression ask your doctor. You can buy waist high compression hose and or an abdominal binder.  People on this forum have also been known to use things like Spanx. But I agree with another person above. Abdominal compression may sometimes worsen digestive issues, so please consult your doctor.  Personally I just find it too uncomfortable so I stuck to thigh high stockings.

Most doctors wouldn't know how much fluid and sodium to intake.  Even the doctors that do recommend give a range and we have to experiment.  A lot of it is just trial and error - if you do it gradually you can see what helps.  Remember to count all fluids (not just water) in measuring your fluid intake. 15 cups - if you increased suddenly, might have an impact on sodium and potassium.  

Anytime.  I am better now.  I look back and think I wasted too much time feeling guilty (and also worrying about whether I would have a POTS episode every time I was out).  It never happened, though I had to sometimes pay after the fact it was worth it.   Im no doctor but think in moderation you should be fine. 

If you drink alcohol once in a while it should be fine.  When I know I will be drinking I load up on extra fluids before and that helps to minimize the effects.    And when I feel like going out but not drinking, I sometimes get a club soda and tell people it's a vodka tonic.  

90/60 is actually considered in the normal range of BP and yours standing BP is also seems normal.  Definitely check with your dr but doesn't seem like you need any BP medicine with these numbers.

If you take a medicine and this is a new symptom that would make sense as the first place to start.   Did you ask your doctor or pharmacist?

IF you start to feel better and feel up to it, you may want to consider starting exercise.  The whole trick with dysautonomia is to get on some kind of medication and become more active if you can, even if it is just walking.  Exercise can help lead to recovery.

I also think that if you have any other medical problem and it is acting up, it can trigger a flareup of dysautonomia.  

It is a normal response for blood pressure to stay the same or to increase a little when you stand up.  

Midodrine increases blood pressure by constricting blood vessels.  Many of us have low BP all the time.  Other people have normal BP while sitting and it drops when they stand.   People with either of these might be able to benefit from midodrine or some of the other treatments that increase BP like compression hose.  If your BP varies from high to low it can be harder to figure out.

The good news is that midodrine is short-acting - it leaves your system in a couple of hours.  So you could talk to your doctor about trying it, and if it doesn't work you will know right away and can stop using it.

Dysautonomia is dysregulation of the autonomic nervous system.  It can change or go back and forth.  But when you are taking a new medication and experience a change, it could be the mediation and not a change in your underlying condition.

YEs, I've even had symptoms a couple of days later.  But it could be eating lunch or something else that causes your afternoon symptoms too

As others mentioned eating can trigger dysautonomia symptoms.  You can have symptoms even when your vitals are fine.  Also you could be intolerant to some of the foods you are eating.  It sometimes helps to keep a diary of what you are eating, your vitals and when you experience symptoms.  I aI eatlso get the sugar cravings and my energy drops, though I am not diabetic.  I always thought it is because I eat too many carbs so my body is "addicted"