yogini

I am always freezing cold.  I think I stop shivering at 70! 75/80 feels comfortable.  When it gets into the 90s I sometimes feel sick.  

A mandolin slicer makes chopping easier. I roast things in the oven with olive oil, salt, pepper.  Add spices if you want (like thyme, rosemary, dill etc) :  salmon, chicken, asparagus, potatoes, brussels sprouts, cauliflower. Super easy, healthy and quick.

I think the recommended amount of salt for dysautonomia is 5g per day.   Most of us who take salt have low BP, although some people with hyper POTS (high HR, high BP) take it too.  It may make sense to coordinate with your doctor on this.

Do you have low blood pressure or just bradycardia?  If you have low (or normal) BP and low HR, have you tried caffeine?  

An MRI is pretty expensive test - mine required special insurance approval - so a dr probably wouldn't order it unless there was a specific concern based upon your symptoms.   Is there a particular condition that you are worried about that an MRI could diagnose?

You are right, it should be from lying to standing. 

A normal resting HR is considered to be 60-100.  The more active you are, from standing, to walking to taking the stairs, the more your HR will go up.  I think most of my friends and family would have a lower resting and active HR than mine.  Mine is say 70-90 while sitting, 100-110 while standing, 110-120 while walking.  I also have an abnormal response to motion - so if I roll over in bed, for example, my HR increases a lot.  I think I have IST (inappropriate sinus tachycardia) in addition to POTS. But my doctors do not consider these numbers dangerous.  The target and maximum heart rates are a lot more than most of us experience (see link below).  That is why maybe why of us have a hard time getting treated. 

I focused a lot on my HR when I first developed POTS.  After 10+ years, I have learned not to think about it, unless really far out of the range, like 120 sitting down or 140 walking.

http://www.heart.org/HEARTORG/HealthyLiving/PhysicalActivity/FitnessBasics/Target-Heart-Rates_UCM_434341_Article.jsp#.WOU9p032Zto

I think being overweight could affect BP or HR in either direction.  It's also normal for heart rate to constantly be fluctuating. It does not stay a flat number. I would compare your average sitting HR to your average standing HR.  Sit for 10 mins.  If the average sitting rate is about 30 bpm less than the average standing rate after you stand for 10 mins, it indicates POTS.  You are right that your legs turning purple isn't normal. 

 I took an SSRI for a few years, it was great for my overall symptoms but not sure it helped with my sleep.  Benadryl, melatonin and ambien have all helped me break the sleep cycle at different times.  Your GP or a sleep specialist can probably help if your POTS dr can't.

I switched to Paxil and that did a good job of keeping up my BP.  IT was really my miracle drug.  I regret ever going on florinef.  

I had high BP with florinef.  I also found it very hard to go off florinef.  I had a total crash when I went off it.  But my BP kept going up. After reading some posts on this forum I figured out that I should tapered my dose very slowly, 1/8 pill at a time. That did not trigger a relapse.

On 3/31/2017 at 7:58 AM, Clb75 said:

My bp can roller coaster as well. I'm 90/60 without Florinef, but with it I'm in the 130-40's over 80-90. My bp will spike much higher than this at certain times, like Kim said the master control is broken. Things that normally raise it a little will really spike it, like stress, exercise or new meds I'm trying for the first time. I've been in the ER several times for a hypertensive crisis from meds that don't even usually affect bp. I have to take an IV steroid at my Ivig infusions, and the first time I took it at half the starting dose, it still spiked my bp 20 points! It took 3 months to work to the normal dose. I've tried lowering the Florinef dose, but I started passing out again so I had to go back to the regular dose. 

My cardio said it's common in pots for bp to swing back and forth, it's not always consistent for everyone. It still doesn't make it easier to deal with. Hopefully you figure out some answers!

I am so glad you are feeling better!  

I never heard of Buspar before your post.  But I just searched on the forum and this post says it is a vasoconstrictor, which increases BP.  If you are experiencing high BP, you might want to ask your doctor or pharmacist whether this drug makes sense for you.  You can also make a separate post on the forum to ask people about their experiences with this medication.  We are pretty sensitive to meds as a group and I think non-POTS doctors usually do not think about the potential impact on POTS.

I am so very sorry for everything you are going through.   Have you spoken to a POTS doctor?  A doctor who is treating your anxiety might assume that your anxiety is causing high BP and give you more anxiety meds.  But that wouldn't help the dysautonomia and might even make it worse, depending on the side effects of the medication.  There are even some POTS meds that help with both anxiety and POTS - like beta blockers and SSRIs - to think about.

 In the first few years of POTS I always felt tired and never felt like I rested enough, no matter how much I slept.  I think I have always needed 10 hours of sleep, even before I got POTS. I could never get out of bed.  Still can't!

is your doctor in the loop on the change in your BP and medication?

I once didn't sleep for 2 weeks straight and went to my dr.  It was a big help for me, and my sleep has been much better since then. So I'd recommend talking to your dr if you haven't already. You have a lot of options, like melatonin, benedryl, prescription drugs and even non-prescription things like sleep hygiene.  There is hope and improving my sleep really helped me get better.

I had very low sleeping HR and BP from time to time when my POTS was at its worst and my standing HR was the same as yours.  It is very scary to have such a big swing, but you might want to check with your dr about this symptom.  My dr told me it's normal - even for healthy people - to have a very low HR when sleeping.  He wasn't concerned. It helped me to drink large cup of broth followed by water a few hours before going to sleep.  

I think many others here on the forum with POTS have low HR from time to time.  It's counterintuitive.  Although the primary symptom in POTS is tachycardia, low HR is also a a common symptom.   You might find some helpful advice by searching through old posts.

I agree - I don't know much about autism, but I imagine POTS or any chronic illness might be harder to process or cause stress.  I would also look into the side effects/interactions of florinef and any other meds he's on.  I used to take florinef many years ago and seem to remember that it causes anxiety.

I would be very annoyed with that response from the technician.  Did you get to meet with a doctor about your test results?  It's  normal question for you to ask if you have POTS after the TTT - and a simple yes or no answer from them based upon whether your HR increased 30bpm during the test.  POTS certainly isn't over-diagnosed, it is way under diagnosed. 

If you click on the DINET main page under information, it will explain the difference between POTS and NCS.   You can have both - they are both dysautonomia.  There are some differences, but many of the treatments are the same. 

I have POTS with low BP and have never passed out.  I think people with POTS can have variable BP - some run high, some run low and others are all over the place.  Fainting is more common in NCS than POTS -- it is possible to have both conditions.  It does seem strange that you'd pass out while your BP is normal.  Maybe ask the next time you see your doctor?

I think some people find a cause, but many of us don't. I got this following a virus, that's all I know. All of my tests other than the tilt table came back normal.

During the first few months I saw many specialists, went to the Mayo Clinic, etc.  Most doctors don't understand POTS at all, but even the experts can only do so much because the science is still developing.  It is much better now than when I first got sick 10+ years ago, but still developing.  

After I didn't find any clues I shifted my energy to trying different medications and forms of exercise. Many of the treatments are the same regardless of the cause anyway. It took some experimenting and hard work, but I am much better now.  

Did you feel better on midodrine at all before you got the hives?  It seems hard to know whether the midorine caused the hives because you didn't get them the first time you tried the medicine, rather 4 days after.  It is a short-lived drug which I don't think builds up in your system.  If your doctor says to retry it, this may be the reason and maybe it is worth trying.  Unfortunately it can be a bit of a process to find the right treatment - no easy answer for most of us.  Hang in there.

Did your dr ok taking the extra medicine? You can search through old posts to read about how to reduce the effects of exercise - different types of exercise and strategies. 

Yes, fitibit is with an app. 

It might make sense to do some research - I haven't looked into this lately.  I bought my HR watch 10+ years ago and back then the scientifically accurate HR monitors all had a chest strap, and Polar was the brand everyone was buying.  Maybe the technology is better now, but still think most ECG accurate HR monitors have a chest strap.   I know there have been lawsuits against the fitibit for mistakes.