yogini

4 hours ago, Vicky said:

Hey all, 

I haven't been diagnosed with POTS, but for a while now I have been experiencing a lot of symptoms that sound like POTS  (extreme fatigue, chronic headaches that go away completely when lying down, dizziness, shortness of breath, blurry vision and more). So recently I was keeping an eye on my HR using FitbitHR and I noticed that my lying/resting HR is usually around 55-57, and it goes up to 95-120 when standing, somewhere in between when sitting down. Lately my symptoms got worse and I find it hard just to climb the stairs or do any light exercise (just after 1 min of a light jog my HR jumps to 180). I have attached my heart rate chart of a normal day (no exercise at all, just switching between, lying, sitting, standing) - since many of you use Fitbit HR, maybe you could let me know if any of this is worth to be concerned about?

Thank you so much! 

 

Hi Vicky, I would count your pulse manually rather than rely on the fitbit, since it has been shown to be inacurrrate. 

Sometimes you have to try a few different beta blockers to find one that works for you. If he tries a low dose at night, maybe that would work? Also the fatigue wears off once your body gets used to the BB.

With high BP I would be reluctant to try salt or compression hose unless your dr approves.

Does the exercise make him sick, or does it just not help?

Hi Marcus, I'm sorry you've had such a hard time finding a doctor. I think there are others on this forum from the Netherlands. Maybe it would be helpful for you to connect with them.

Funny! A sandwich here is two pieces of bread plus fillings like meat and cheese, plus mayonnaise, etc. 

Ask your doctor, but I think it probably would not be healthy for most people to eat so much plain bread in one day. But  I have a much easier time digesting foods other than carbohydrates (like bread), so I understand why bread would be a main staple.  I think it is probably not POTS itself, but a co-condition which affects your ability to eat - so I hope you are able to get a diagnosis.

Maybe you mean a different word than sandwich?  A sandwich (in the US) would at the very least have 300 calories (often much more) and generally lots of fat.  30 sandwiches would put you at 9000 calories per day not including other stuff you eat. I  would check with your doctor about your fat intake if it is outside of guidelines.  Some people with dysautonomia get sick from eating a lot at once (it lowers your blood pressure) and also have food intolerances or gastric conditions, which might be factoring into to your ability to eat things.

I switched to yoga and that is much better for me.  I have done cardio at times, but with yoga I can walk out of a class and immediately do another activity. I don't feel depleted. Though I used to have to sleep after class, when I first started, I never got headaches, etc. like I did with cardio.  And my POTS symptoms are minimal now, so it did the trick.

I drink organic broth when I need salt because I couldn't find anything else that works.  Hydration drinks don't have much salt and natural foods have virtually none.  A higher salt diet has made a noticeable difference for me.

Yes.  At first I started by riding a bike for 5 minutes.  Do whatever you can do. Even doing stretches on the floor is a good start.  That's what I did on my very worst days.

As an update, I noticed this article in my local paper about the accuracy of the Fitbit, based on a recent study by the Cleveland clinic:

http://www.nydailynews.com/life-style/fitbit-piece-junk-article-1.3048298?utm_content=buffer27789&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer 

https://www.sciencedaily.com/releases/2017/03/170308145327.html

I've heard the collagen in bone marrow is healing, but I think you would get more of his from eating meat or the marrow itself. I think it's the hydration and the fact that it's very easy to digest that makes it helpful to many conditions.

And by the way, I agree with corina.  Generally with POTS it would be both pupils dilated.  

You can definitely still have symptoms when your HR and BP are normal.  However, I wonder if your BP was low at the time you experienced these symptoms.

What was your total salt intake before and after the diet change?  Your new diet could be very low in salt, even with the Pedialyte and coconut water.

10 hours ago, BuffRockChick said:

@yogini, I'm making bone broth right now!  Just bones and water, boil and add whatever seasonings you like.  You can freeze the boiled bones and reuse them a couple times to make another batch of broth!

Tonight I'm making bone broth using 2 picked over rotisserie chicken carcasses.  Whatever seasoning is on them makes my favorite broth.  

Edited to add: It's easiest if you have a stock pot with a strainer insert.  Lift out the inserts with the bones and any extras, and you're done!

Thanks! I actually make homemade chicken soup which I guess is the same concept.

2 hours ago, MonkeyBug said:

I also make my own bone broth which I swear heals my gut. When I stop making it and don't drink it for weeks symptoms creep back up. Back on the bone broth and everything improves again. You'd think I'd learn to no forgo it but you know how life gets....

I am in terested in trying bone broth.  There are whole restaurants dedicated to it here in NY.   But is very expensive. Do you have a good recipe?

You can look at the DINET physician list on the main page. If you have dysautonomia, you would have an abnormal increase in heart rate or an abnormal decrease in blood pressure when standing, not just during your episodes. It might save time if you figure this out at home out before contacting a doctor. 

Have you been diagnosed with dysautonomia?   If you want to measure your HR and BP, you can count your pulse and buy a cheap blood pressure cuff.  

I have been drinking a lot of tea (peppermint or ginger) lately. It has helped my stomach.  I think I am getting more fluids from drinking this, which is an added plus.

i drink organic broth to stay hydrated during stressful periods

i take melatonin for sleep.

It might be helpful to search other posts as this topic comes up a lot.  It sounds like you are preparing correctly.  Most people - even those with very severe dysautonomia, wheelchair bound, etc. - do OK when they prepare.  I have not heard of too many (if any) emergencies during travel.  But if you are worried, maybe it is better to wait until another time when you are more comfortable.  Stress will not help.

If you didn't have the symptom before you started florinef, or don't remember, I would ask your dr. Florinef has a lot of side effects.

I think there good info both on DINET and on the forum about the best exercises for dysautonomia.  Most people do seated or reclining exercises.

Dysautonomia causes many of us to have trouble keeping up our blood pressure during exercise.  Stairs are challenging for us.  Did your doctor give you these particular exercises for POTS?

My mandoline slicer slices so thick (or slices my finger)...lol!!!

Have you been tested for low blood volume?  You can have low BV without low BP.   I think any of us here would really be guessing and we are most familiar with bradycardia incidental to NCS or POTS.   Sometimes it takes time to find the right dr for these types of issues.  I'd encourage you to keep looking

Have you had a heart workup from your cardio - ECG, EKG, stress test, etc?  This should generally pick up anything that is wrong with your heart that would cause you to faint, etc.  Palpitations are pretty common and they are scary, but they are usually not dangerous for POTS patients.  I would get the workup as a starting point, which you should be able to do without mentioning your concern about driving.