StayAtHomeMom

I have not seen BP unless you get one of the wrist cuffs. Those can be unreliable though. Some people it works great, others not so much. I have seen the new Garmin that does HR and O2. I am thinking about upgrading my Garmin vivosmart HR to that one come taxes. I am concerned that it will be too small though. My current one is small enough and that new one is supposed to be smaller. 

I love my garmin. It is waterproof and does the usual activity tracking plus HR. I have tested it against a pulse oximeter and it is fairly accurate (not checked it during exercise). Just make sure you wait til the icon stops blinking when you do a manual check. Other than a manual check it does automatic every 2 minutes. And from my garmin I can check the last 4 hours and see a graph and high and low. From the app I can see more. If I don't feel good I can do a manual check and decide whether to push through or go lay done. Or if I am in the shower and it is over 140 I know to get out.  It has been a life saver for me. The only draw back is the automatic check ever 2 minutes. I have had attacks and it doesn't catch it. And it doesn't save a manual check.

I have noticed the days I do nothing I actually feel worse. Have you tried just walking for a long period of time?

I want to start with congratulations. You got your diagnosis very quickly!! You noticed your HR a lot quicker than I ever did. It took me 9 months to notice it. 

Personally I take metoprolol and midodrine. Metoperlol is amazing for HR and heart palpitations. My midodrine helps with other symptoms. See if they would let you try that instead of the fludocortisone they have you trying. Midodrine helps up BP by vasoconstriction. I get tingling scalp from it but it is not keeping me from taking it. 

I would advise looking for triggers. Certain things you do or eat that triggers an "attack". Like I can't do anything or my head. If I have my hands over my head for more than a minute I have an attack that lasts for at least 30 minutes. 

Again congrats on such a quick diagnosis. It sounds like you have found good doctors. 

From my knowledge you have a little fluid in your right ear, a "glob" in your left cheek sinus, and everything else is normal. It sounds like you have mild allergies or recently got over a cold. You can have an ENT look at that cheek sinus but most don't worry. I have one in my right cheek sinus that almost takes up that entire space and the ENT I seen wasn't concerned. He was more concerned about my deviated septum. It looks like your brain MRI came back good. Congrats. 

I am unusual it seems. My blood pressure stays pretty steady. It may move a little but usually no more than 10 points either direction. I had a couple doctors tell me it was low at 110/70 but I was also taking a beta blocker only. I just ignore those doctors. Not my usual one anyway. When I am on both my meds or none my BP is 120/80. 

3 hours ago, Pistol said:

@StayAtHomeMom - I am the same way - if I get to a certain point I can no longer stand still or I pass out. Walking is still bad but I tolerate it better. Yesterday I was in a grocery store with my husband. I never do the check out lane b/c it has to be empty or I go down. Well - he had to do something and I was in check-out behind a very slow person with a full cart and … well, I ended up sitting on the floor checking out the cinnamon gum on the bottom shelf as if my life depended on it. And the funny thing is that my hubby came in looking for me and could not find me b/c I was on the floor! But eventually he found me and saved the day. So - yes, I also find that standing is much worse than walking and I believe that this is due to the use of the leg muscles helps with circulation, vs standing makes everything "stand still". 

I have that issue. I do fine around the store but as soon as I check out my body freaks out. It is frustrating. Even fidgeting doesn't help a whole lot. I have to feel decent to go to the store. 

18 hours ago, mercuryrising said:

I guess what I find confusing is how long that elevated HR from sitting to standing is sustained in a person with POTS vs a normal person? Does the change of 30bpm have to occur within 10 minutes or sustained for 10 minutes? I feel like by 10 minutes my HR will change back to the normal range. I always feel that way after a bath. I suspect that my HR usually gets that high or higher based on the fact that I always have fatigue, breathlessness and difficulty standing up right after a bath. Again thank you for all your help, I really do not know much about POTS.

It generally stays elevated as you stand if you have POTS. You may not notice it after a while or symptoms may worsen. POTS can be crazy unpredictable. For me it is when I stand still. If I walk slowly or fidget it will bring my HR down a little. But 115 while walking "slow turtle speed" is still not a normal response. A bath is easier for my body to tolerate as well. Showers are exhausting. I have a Garmin HR and when I shower I will keep an eye on my HR and once it gets to 140 I usually get out. I also usually have my hubby babysit me as well. I have had a few times for the exhaustion hit before I could go lay down so it makes me feel better to know he is around close by. 

On 1/3/2019 at 11:40 PM, Crazycatlady said:

Pretty sure it might just be the salad... lots of fiber... maybe IBS related?

 

what was it about the pizza ? Do you know? That’s a total bummer !

The crust. I am on keto now and my GI issues are lots better. When I first got sick anything bready or "heavy" made me feel bloated and I wouldn't be hungry. Also felt like I was pregnant and the baby was pushing on my lungs. 

Beware of rides. I took my family to a local fair this past summer.  I rode the one that is a giant ship that sways back and forth. Wore me out. But I could do the kiddy rollar coaster that just goes in circles. the memories are great though. Wouldn't trade them for the world. 

I would say yes. If that is too difficult try sitting upright as much as possible. I don't exercise. But I move around. I noticed on the weekends when I like to veg on the couch and play video games I have a harder time with my fatigue. 

BTW pizza was my biggest trigger for a while. 

Salads or what you put in them?

9 hours ago, mercuryrising said:

I'm not sure about the accuracy either. I did my HR laying down (55) and then immediately upon standing (109).

Do it again after standing for about 3-5 minutes. I would say if you get similar numbers to try borrowing a BP cuff to check HR that way. If you see your doctor first they can use a pulse oximeter (unless you know someone that has one). Don't fidget while standing either. Just stand straight. Don't look or watch anything that can cause your HR to elevate either. I know it sounds weird but little things can cause your HR to fluctuate and you want to have the most accurate reading you can get. 

When I was starting to get better I went to comic con with my family and I would take dramimine. The motion sickness medicine. I have noise sensitivity and half a pill would help the dizziness. That was before I started my medication I am currently on now. 

9 hours ago, Jessica_ said:

I have been prescribed klonopin and I take it as needed when I know I will be in a over stimulated place but it doesn’t really work that great. I still feel anxious and have those doomy thoughts. I see my neurologist next week I will ask him about Xanax. I have always perceived Xanax as something that knocks you out and makes you forget what happens while your on it. How do you feel on it? 

If I remember right they gave me 5mg. I would cut it in half and just take half. It would make me a little tired but it was better than the alternative. There is also an anti-histamine that can be used off-label for anxiety that didn't cause sleepiness. It didn't help me but it helps a friend of mind's daughter. 

Can you get a doctor to prescribe you a low dose Xanax to help? It may not help everything but it may help some of it. When they gave it to me when I first got sick it helped half my symptoms. Not all but it did keep me from going to the ER about a dozen times. 

Oh and by the way standing up and "wonky" vision happening is not normal unless you are dehydrated. I always thought that was normal for a long time too. 

2 hours ago, mercuryrising said:

Thanks for the reply!

Yes, I was tested for celiac about 8 years ago. Forgot to mention in the above post that I am currently 21 years old... I find it hard to keep up with other people my age who seem to have a lot more stamina than I do. I will see if I can find a HR app and see what that shows. I actually have blood pressure that borders on the lower end of normal.

Not sure how accurate an HR app would be, but I guess it would be a cheap place to start. Fatigue can be a symptom of so many things. Everything else should be ruled out before a dysautonomia diagnosis. 

POTS symptoms can be "vague" symptoms and could be something benign. With your GI issues have you ever been checked out for celiac or crow's? (Sorry my spelling sucks). Also you mention for your age you sleep well. Depending on your age you could have just developed high blood pressure (my mom's tell tale symptom was the headaches). That being said, without knowing your heart rate there is no telling. The heart rate change is what indicates POTS. You can check it using a fitness tracker or even just doing a poor man's tilt table test to see. If you do notice the HR change of over 30 then I would talk to your doctor. If you feel like something is wrong wih your body, I would talk to the doctor anyway. If anything they can help calm your fears and maybe get some basic blood work done at the same time. 

Welcome. In my research I have come across information that doctors will prescribe what they did you. Personally I have not tried it. Taking your medication as prescribed can help. Sometimes without you realizing it (until you forget to take it). There is a lot of trial and error. Don't give up. You may never feel like you did 10 years ago. But you will get better than where you are. Find your triggers and avoid them. For me it is noise and heat. And I am beginning to see a pattern with long trips as well. They exhaust me way more than they should. 

I have never had a colonoscopy yet. Maybe you could ask the doctor how the different prep could help you. Maybe talking it out with the doctor will help ease your anxiety about the procedure. If all else fails see if you can take a few Xanax to help get you through. 

Have they suggested kefir? Or culturelle? I know it is bacteria and you already have an over abundance but maybe the good stuff can help keep the bad stuff in check? May help your other GI issues as well. 

Your PCP may not know what is normal for this kind of testing. Depending on your doctor try talking to him about the research you have found. If needed show him the research from a reliable source. Maybe your PCP needs to expand his knowledge about our unusual condition. Most doctors have no idea what it is. Very few have indicated any knowledge in my experience. 

14 hours ago, MeganMN said:

Thanks guys! A win today, yesterday was awful and today I made it outside with the hubby and kids to have a fire, got dogs, and tea by the fire in the new snow! Felt sooo tired with chest pain the whole time walking, but had fun anyway!

Enjoy those moments. Use them to help motivate you toward getting through the bad times. I think I appreciate those fun moments all the more because I have to work harder for them. 

On 12/29/2018 at 6:44 PM, Sam goodrich said:

The doctor said it was not a live virus. I haven’t had a crash this bad since 2015. Have worked my way up to climbing mountains and working 12 hour days . I believe it was the flu shot,  I went downhill a hour after the injection 

I am not sure then. Maybe it was just the shot itself.