firewatcher

I just finished an attempt with Bystolic, which is a beta blocker that works directly on endothelial NO by increasing it. I did notice increased energy and lessened brainfog, but it didn't control my other issues (tremor, flushing, sweaty palms, etc.) It also kept me awake at night and gave me nasty nocturnal headaches (I theorize that it simply lasted too long in my system and made me even further bradycardic while sleeping than I normally am.) I did not notice any increased benefit as far as exercise tolerance or recovery. I have also taken Taurine before my workouts and have not noticed any lasting benefit or decrease in post exercise soreness, but the malaise is slightly better. I think that NO is part of the puzzle with POTS, but there are too many variables, so it isn't a cure.

Finding a new doc is worse than dating! But very similar because you are looking for someone to trust with your life, possibly for a very long time!

Why finding a doc is WORSE than dating:

Because you don't know what they will be like until you get there

.......but they KNOW about you because they have your records!

Because you don't know if after the first meeting if you'll ever see them again

.......either of you could think the other is a nut!

Because sometimes, the first time the doc sees you, you are in a paper gown with only your underwear on

.......generally you don't get to that point till farther down the dating path (hopefully never! )

Because they can say nasty, hurtful things about you and it carries more weight

.......AND totally effects what your next doc/date thinks!

Because those new patient appointments are bleeping hard to schedule

.......it takes months, no matter what! By then, you might need a different type of doctor!

Because you are trying to find someone to talk to who will listen, believe you, and make you feel better

.......your date can pretend, but your doc has to actually do it!

Because this guy/gal in the white coat across from you is supposed to take care of you and your very life

.......after 15 minutes in his office and nothing to go on but paperwork!

Because the doc may be totally HOT, hot, HOT!

........but you have to try to talk (through the blushing) about your rash, or whatever. Or worse, the tachycardia made worse by the fact he's HOT!

Because even IF the two of you hit it off, spend years successfully treating your condition and getting to know one another,

.......they still aren't your friend, they are your doctor, and it is only a professional relationship.

Because they really want to know how you feel, and they NEED to know how you feel,

.......but they honestly don't emotionally care about it.

did I miss anything?

Melatonin helps my tachycardia, adrenal rushes and most all my symptoms. There was a marked difference on my holter monitor within 30-45 minutes after taking my nightly melatonin. I only take a little, 1.5mg, but I have found it helps tremendously. The problem is that you can't take it all day. At the wrong time it will really mess with your circadian rhythm and even your hormones! It works if you take it at dusk, when your body is supposed to start making it anyway.

My HR went to 180+ within 7 minutes of my stress test. It will go above that while exercising, even on a beta blocker. It is the upper threshold of consciousness for me (now) if it is continuous. When I was younger, I thought that you exercised at 220-your age, so I kept it up around 200 with any exercise. The thing about heart rate is YOUR anaerobic threshold: the point where you are no longer working with enough oxygen in your blood and muscles to sustain activity. Once you pass into anaerobic exercise or HR, your heart and lungs can't compensate for your activity and supply enough oxygen to meet demand. You will pass out if you sustain an anaerobic condition. If you are under 30, can function fairly normally AND it comes back down under 100 bpm when you are sitting (unmedicated) you are probably OK. If it is at 180 just sitting there, you've got a problem.

I am tearing my hair out here! I need to find a cardiologist inside the state of Georgia to run some testing and "monitor" me since Vanderbilt doesn't do follow-up. I swear I'd get more takers if I was looking for a doc to voluntarily amputate both my legs! The cardiologist that came so highly recommended as a "problem solver" for "unusual cases" is turning out to be a milk-toast and his nurse is an idiot. WHY is it so hard to find a competent doctor who actually wants to see something other than heart attacks and high blood pressure? What do they do to earn that white coat, get a lobotomy? Or just drop their brains into a box they can't take it out of?

AAAAAAAaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrgh!!

Sometimes, when I see someone running down the road, I have the irrational and absolutely unthinkable urge to hit them with my car. I look at the ladies in carpool line, standing and chatting and just want to scream! Yeah, I think we all get that. Just don't act out on it!

My prayers also go out to you and your family!

I know that your little one's cause is Chiari, but Riley-Day (Familial Dysautonomia) also strikes infants, so the treatment center at New York Hospital might give better insight:

Riley-Day Familial dysautonomia

They may be able to guide the doctors in treatments and dosages.

Keep us all posted, you are in my thoughts and prayers!

Jennifer

How?

Because I choose to. It is the only choice I do have. I can't control anything other than my own reactions and attitudes; not my physical condition, not my abilities for the day, not others.....nothing. I don't know when I'll feel good, or bad, but I know what makes me worse. It seems like everything that I used to enjoy has been taken from me by life and circumstance: gardening, exercise, cooking....even some friendships. I keep wondering what life or POTS will take next. I have no surety of health to allow me to plan past an hour. I do the best I can at that given moment. It is all I can do. Control is an illusion and understanding that can bring a peace that I hope you find. It comes and goes and you'll have to find it every day, sometimes several times a day.

But it does make me thankful for the things that I do have and YOU will have to find those. Start small, be thankful for having all your hair (if you do,) or beautiful feet.....anything! Gratitude is supposed to be the key to happiness. It is hard, but it is a choice.

Let's see, before my "formal diagnosis," I was mislabeled as having/being:

bipolar

asthma

anxiety disorder

attention seeking

lazy

deconditioned

very pleasant and in no acute distress.

You could also include a portion of how we've been "DYS-ed" or mislabled as crazy or malingering, anxiety prone, hypochondriacs, attention seeking, drug seeking, etc.

You could poll a couple dozen docs and ask if they know what POTS is, what the symptoms are and treatments. I'm betting that among GPs and even Cardiologists, there is almost NO awareness of it, if not outright dismissal of it. My doc had never heard of it until I suggested it.

I am glad to see you still on the forum today! I get to similar points where I feel like POTS has taken everything I enjoy from me and I don't even want to hear a kind word from anyone. Sometimes I find a sort of peace from just "letting go" and finding that even after that point, I still breathe.

May you find that peace.

Unfortunately, you are at the top of the knowledge threshold with your specific ANS dysfunction. I doubt there are more than one or two physicians in the world who would even be able to give you more information than you already know. With ALL of us, we have a heightened sensitivity to what is going on inside our bodies. There is no stable, automatic response that we can take for granted or ignore. Each of us respond to "normal" circumstances in abnormal ways and very little of it is understood. You probably aren't OVERreacting, you are just noticing, but since they have no answers you are left to deal with it.

I can't tell you how many times I've heard: " well, it isn't normal for anyone else, but it MUST be normal for you......."

For accuracy, you need to see an endocrinologist for adrenal testing. A PCP's lab and staff are not usually equipped or qualified to perform an adrenal stimulation test.

Julie,

This has been one of my biggest complaints! I have a tremor in both hands, feet, head and tongue . It is an enhanced physiologic tremor from the sympathetic overactivity. Propranolol has been the only thing to stop it for me.

Olives and Spagettios. (not together!)

One of the things you've got to watch with the bananas is the potassium. Sodium and potassium regulate one another, they will be inversely related. If you want to lose sodium, take in potassium, if you want to keep sodium, drop potassium. So salting a banana is probably a draw.

Interesting. Thermotabs have salt & potassium in them, right? They're the salt tablets that Mack's doctors recommend.

Yes, they have both. But there is only enough K to buffer the Na in the stomach, there is not enough to counteract the amount of sodium and the ratio is better than Gatorade (which is higher in K.) I take thermotabs as well, I don't like all the carbs/sugar in Gatorade and think that it contributes to my recent yeast infections.

Hey it works the opposite way too: you can have wonky bloodwork, but no urine protein. Ah dysautonomia........the great confuser!

Frustrated

I'm sorry it didn't go well. Like the doc said in the latest DINET newsletter, if they doubt you....move on! Take a couple recovery days and be good to yourself. I know what you mean about being a guinea pig though....I'm about to change my name to "The Golden Hamster," it has a nice ring to it and it is sooooooooo appropriate.

High BP and HR are normal with exertion. During Pilates, my BP is 185/140 and my HR is in the 160+ range. It TOTALLY depends on the type of exercise as well. Cardio won't cause a BP spike that high unless there is something wrong, but weights or anaerobic strength training is just about the same as the Valsalva. As long as it comes back down, it is probably OK. You also did it with a wrist cuff: Vandy couldn't get the thing to read on me because I constrict so hard in my extremities: so the blood pressure in your wrist would be higher if you were a constrictor.

It is just easier for me to get on all fours and crawl.

OKAY, I'll start the part of the conversation for those of us who can't or find it nearly impossible to exercise. Granted I have issues because of Ehlers Danlos. I have vascular issues that cause my veins NOT to constrict enough to bring blood back up my legs and have allot of blood pool in my abdomen that causes allot of nausea. When I try to walk or stay upright on my legs for very long, I get nauseous, faint, dizzy and start feeling like my legs will not pick up. When I stop and try to rest, that's when my pulse starts going sky high. So, I have to sit or lie at that point and it has to be rather fast. There's the feeling of complete unwell and if you try to push through it, you are down and sick in the bed for days afterward.

I've always wanted to be an athlete and be in good shape and be able to do all the things people do in sports or play, but I've never had that ability. I've been at times nearly wheel chair bound and have had to use a cane to walk. I think I have some other issues going on too, but the autonomic nerveous system can and does affect us all in different ways.

We should be a little more tolerable of differences, because we are all dealing with the same POTS issue, no matter what the reason or cause. It's so complex and different for all people. It makes me sad that I can't go run, or go to the gym and do those type things. I'm happy for those of you that can, but feel a deep sense of inadequancy in my body. It's so very frustrating.

Are there others out there with the inability to exercise?

I am not able to do cardio at all, even on a BB, my HR goes too high (180+) and the sparkles start dancing before my eyes and I end up in the floor dry heaving. I can do strength training though, and I do Pilates with a PT once a week. I am totally wiped out for 3-4 days after and unable to do much at all other than the bare minimums of daily functioning. I have always felt that deep sense of inadequacy, my family always called me lazy and my coaches at school were even less kind. I still feel a certain resentment towards runners (something I've never been able to do.) Despite my cardio limitations, I was always the most fit member of my family: karate, weight lifting, etc. None of the things I did were aerobic, always anaerobic. Even with Pilates, working completely supine, my HR will go high if we try any cardio, and my legs will collapse. Even those of us who can exercise have "abnormal" limitations. Don't feel inadequate, work up as you can and never push beyond your own comfort zone. I try to stop with the feeling that I could have done a bit more instead of pushing myself to exhaustion every time. I am pretty sure that every one of us had a time where we were absolutely unable to exercise. As far as I have gotten, it is not where I want or am "supposed" to be.

For those of you who actually CAN do anything cardiovascular (I do not include myself in this yet,) have you noticed that your tachycardia has dropped? Are your POTS numbers better, or do you still have the wild swings in HR with posture? Has your resting HR gotten lower? Does the increase in cardiac performance translate into less of an orthostatic response?

It might be your body's attempt to compensate for the higher dose. Or, it could be something else entirely: my new cardiologist ordered a full thyroid panel. My BP was 120/90 sitting in his office and my diastolic just won't go down if I am upright. Keep track of it and don't let them brush you aside!

"I feel at my worst typically right before my period."

I do too, which is why I find this article odd. I have noticed that my orthostatic numbers are actually better though.