firewatcher

"That's a good explanation, BUT may not explain the whole picture. Mack's last RBC numbers were high and his serum osmolality was low, meaning that there was plenty of plasma in the blood... That's a conundrum I think there's also something else going on."

Julie,

I agree. High RBC/Hematocrit can also be a normal response to chronic hypoxia. I think that this is also a part of what is going on with me as well as low plasma volume. I think that as I hyper-constrict that my kidneys are being deprived of blood and O2 and ramping up the red blood cell production. Dehydration doesn't fully explain the amount of elevation in my bloodwork either.

Thanks for sharing that. I looked at mine over the years and the MCH and MCV are uniformly high -- but not a 'high' high -- meaning if the reference goes to 33 -- then mine will be 33.1 So almost high normal - yet not. On the hemoglobin - and hematocrit ... near 15 but not over and the corresponding hematocrit at the first number of abnormal on the high scale. So high -- but not terribly high.

But again - why would it be that an EDS'er or a POTS patient have these numbers? Is it a hydration issue? A blood volume issue that isn't hydration related? I am curious. I also wondered if these numbers ever impact the HbA1C unfavorably because no one in my family has diabetes or such issues. Yet I am always high normal at 5.9 - or 'officially' pre-diabetic with a 6.0.........

Anyone care to comment? Thank you again Firewatcher - you folks are so filled with knowledge :-)

It IS a hydration issue, at least for me. I am not short of RBC, but the measurement is the amount of red blood cells in whole blood, so I am short of plasma, not the stuff in it. When my plasma volume is up, my bloodwork looks normal. If I don't take the dDAVP then my plasma and free body water levels drop and my blood gets thicker so that the "stuff" in it makes up a higher percentage than it should. Any clearer? I'll try to find a better explanation and paste it in.

WebMD:

# Hematocrit (HCT, packed cell volume, PCV). This test measures the amount of space (volume) red blood cells take up in the blood. The value is given as a percentage of red blood cells in a volume of blood. For example, a hematocrit of 38 means that 38% of the blood's volume is made of red blood cells. Hematocrit and hemoglobin values are the two major tests that show if anemia or polycythemia is present.

# Hemoglobin (Hgb). The hemoglobin molecule fills up the red blood cells. It carries oxygen and gives the blood cell its red color. The hemoglobin test measures the amount of hemoglobin in blood and is a good measure of the blood's ability to carry oxygen throughout the body.

# Red blood cell indices. There are three red blood cell indices: mean corpuscular volume (MCV), mean corpuscular hemoglobin (MCH), and mean corpuscular hemoglobin concentration (MCHC). They are measured by a machine and their values come from other measurements in a CBC. The MCV shows the size of the red blood cells. The MCH value is the amount of hemoglobin in an average red blood cell. The MCHC measures the concentration of hemoglobin in an average red blood cell. These numbers help in the diagnosis of different types of anemia. Red cell distribution width (RDW) can also be measured which shows if the cells are all the same or different sizes or shapes.

Since I didn't test "positive" for Myasthenia Gravis, they wouldn't prescribe Mestinon for me. I asked.

BTW, I'm a POTS-info-junkie (Google-a-holic,) not a pro.

Would anyone mind posting what their high hemoglobin's are and the MCV and MCH kind of numbers are? And can you teach me what this has to do with anything dysautonomia wise? I am ignorant - and while I don't have my labs handy this second I did look at them just the other day - and the MCV is high and my hemoglobin for a woman over age 50 was near 15. I believe my entire life my MCV and that other M-number have been border-line high or high ... and I don't know why. Once a doctor asked me if I drank a lot...??? I told her 'no I do not' - then she said that sometimes that can be seen as an early sign of drinking 'damage' ... well that shoe didn't fit -- but I still don't know what this means....and also how it relates to this forum's kind of issues....

thanks guys!

RBC = 5.37 ref. interval: 3.80-5.10

Hemoglobin= 15.8 ref. interval: 11.5-15.0

Hematocrit = 47.5 ref. interval: 34-44

not high enough for polycythemia vera, but too high for a woman of my age. The only time mine are correct is at a lower blood thickness due to dDAVP.

I tried B-12 when I first had my POTS crash in 2007 and it made me MUCH worse. I had horrible insomnia from it. My new doc immediately checked my B-12 levels on my first appointment with him and I had 5 times 2X the normal level of B-12 in my blood from the supplement. I just can't seem to use it once it gets into my system.

Did you notice immediate problems with taking the B-12 or did they develop after a couple weeks on it?

It was within two weeks, with each progressive week getting worse. I don't think it was the B-12, but the subsequent sleep deprivation it caused. Once I stopped taking it, it was another week or two before I returned to my "normal" night-owl insomnia, but the tremor never went away. I had not taken B-12 for 3 months when my levels were tested, so I don't know how much was in my system when I was actively taking it.

I tried B-12 when I first had my POTS crash in 2007 and it made me MUCH worse. I had horrible insomnia from it. My new doc immediately checked my B-12 levels on my first appointment with him and I had 5 times 2X the normal level of B-12 in my blood from the supplement. I just can't seem to use it once it gets into my system.

just rechecked my old lab report B12 = 1636pg/mL (normal range 211-911pg/mL) sorry!

still didn't work for me...

yes, the dysautonomia doctor at mayo saw how weak my legs were and then just assumed I had pots due to deconditioning. I was a very competitive dancer for 7 years, and a non-competitive dancer for the other 10. There's no way they just stopped being strong... must be a connection.

But are we saying PT does not help or it just hasn't helped enough? Is it worth it, I guess is what I'm asking.

PT has not helped me with POTS. My legs are just as weak as they were two years ago. I agree that there is probably a connection, at least with flares. I used to have very strong legs before my big POTS crash, and I know that I've had POTS since I was a young child (dizziness, tachycardia and exercise intolerance.) I am trying my hardest to get back to where I was before my crash, but I just can't seem to get there.

A sleep study would pick up on REM sleep behavior disorder even without the imaging:

"In a person with REM sleep behavior disorder (RBD), the paralysis that normally occurs during REM sleep is incomplete or absent, allowing the person to "act out" his or her dreams. RBD is characterized by the acting out of dreams that are vivid, intense, and violent. Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing..."

But your sleep partner (if you have one) would be able to tell you as well. It might discover apnea as well, which is treatable!

Autonomic dysreflexia (hyperreflexia) is something that has been brought up before. A neurologist at UCSF ruled it out because I do not get headaches, I do not have any sweating associated with the flushing, nor do my pupils become dilated. I have not had any spinal chord injuries either, but don't recall going over this fact during my appointments with the neurologist. This is something I will keep in mind, however, as it is somewhat similar to what I am experiencing- and obviously, not everyone has the exact same symptoms (I.E. POTS patients). Luckily the endocrinologist I recently saw checked my dopamine levels, which I am awaiting the results of. If these come back positive it would be an indication for pheo/autonomic hyperreflexia. Thanks firewatcher for this info!

Autonomic hyperreflexia is interesting- while researching it, I noticed that it can also cause orhtostatic hypotension. I wonder if any one on this forum has this but does not know it (from what I read, many doctors are oblivious to it).

Honestly, I fit the description pretty well myself (Enormous pupils, headache, cold sweats, flushing...but no spinal chord injuries here either.) A hyper-active ANS is a good description of hyperadrenergic-POTS isn't it? I get flushing too, some times worse than others. Unfortunately, I think it is pretty normal for us.

Hi Jay,

I was reading here:

autonomic hyperreflexia

And immediately thought of this thread. With your elevated norepinephrine levels isn't this what is going on? Note that the flushing only occurs from the point of spinal damage upwards, just like you described. Would this explain anything for you?

I totally second the "Big, Black Binder O' Medical Records!" I would first ask the physicians that you are seeing now if they know of someone that they would recommend. (MDs can be a tight "clique" and know someone everywhere.) Next, I'd call your insurance, usually they have a nurse/care line for medical questions and mine actually did a pretty extensive search and found two docs who know about POTS. You could call the medical university that is closest to your new destination and start there. Lastly, you could look on a website like healthgrades.com or vitals.com and search for someone with a good review.

The tricky part is when you get to the "seeing them" phase. I found my new GP by asking for a new patient interview, to see if we could WORK TOGETHER. If the doc poo-poos you or questions your diagnosis, say thank you and move on. You will find someone open minded and willing to work with your past docs eventually. My current doc was not POTS literate (but is now) but had been through Mayo, so he knew these rare conditions were not that rare. He has been great, he works with my other docs well and has been completely honest with me. If there is an issue that he can't handle he will find someone who can, that is more important than a complete understanding of POTS.

Good luck, I hate going to new docs, but sometimes it works out really well.

If you had it as a child, you should be immune. My Mom made me play with my brother when he had them so that I would get them too.

Sorry about your little one. Put some socks on his hands so he won't scratch.

The latest news:

Midodrine likely to stay on market

things are actually better since I started my "Eastern approach." The herbal medication is cutting down on the pain after my workouts.

What type of supplements are you using? For pain and/or POTS?

I know this answer will frustrate you, but what works for me may not be what you need. I have weekly acupressure treatments (the insertion of a needle would fire up the sympathetic NS) and specifically tailored formulas of Traditional Chinese Herbs. I know that with my formula, two of the three ingredients are licorice and ginger, but I couldn't tell you the amounts. I know it isn't the placebo effect since my formula raises my BP to a point where I have to monitor it. My OM doc is treating me for "Kidney Deficiency" but it isn't anything like Western concepts of kidney problems. He is also treating me for "Blood Deficiency," which actually IS very similar to the Western concept of hypovolemia. The Oriental Medicine approach is very integrated and explains some of the stranger symptoms of POTS very neatly, from an Eastern point of view. I have not gotten far enough into treatment to tell you with certainty that it is a good thing, but so far it is for me: I'm down to .25mg of Klonopin a day instead of .75+mg and my headaches and fatigue are better. The herbs aren't supplements and aren't being treated that way; they are medicines and are very specifically prepared. If you check into this route, screen your practioner very carefully, they need to be licensed and experienced...you can become very sick, very fast with this stuff----just like with Western Medicine.

Reen- things are actually better since I started my "Eastern approach." The herbal medication is cutting down on the pain after my workouts.

Nowwhat!- I have not revisited the MG labs and yes, I'm hypermobile. My Tai Chi instructor told me today that "almost nobody" has the hip flexion that I am showing and we discovered that my stances are too "open" and that was causing the knee pain. The docs don't care that my legs are getting smaller, its "in my head" or me "obsessing." My PT knows and thinks that I need to shift down a gear and go slower so that my brain doesn't shut the muscles down as quickly. I talked to her after my Tai Chi class and she thinks that upright exercise is just too much.

Green- It is unpleasant. Squats are the worst for me too. Apparently the Chinese call the thighs the "second heart" and the TC instructor gave me some conditioning exercises to do.

This isn't a new problem for me (well, since my POTS crash in 2007,) I just noticed that several other people mentioned it and wondered if it was "common" with us. I know that hormone issues can cause muscle wasting and I've got plenty of those!

From Rxlist.com:

The usual initial dosage is 40 mg Inderal twice daily, whether used alone or added to a diuretic. Dosage may be increased gradually until adequate blood pressure control is achieved. The usual maintenance dosage is 120 mg to 240 mg per day. In some instances a dosage of 640 mg a day may be required. The time needed for full antihypertensive response to a given dosage is variable and may range from a few days to several weeks.

While twice-daily dosing is effective and can maintain a reduction in blood pressure throughout the day, some patients, especially when lower doses are used, may experience a modest rise in blood pressure toward the end of the 12-hour dosing interval. This can be evaluated by measuring blood pressure near the end of the dosing interval to determine whether satisfactory control is being maintained throughout the day. If control is not adequate, a larger dose, or 3-times-daily therapy may achieve better control.

I take 20mg once a day and I get rebound high BP and bradycardia if I am dehydrated.

I was checked for Myasthenia Gravis, but the test was inconclusive, in the zone between you don't have it and you do. So, the doc said I didn't. If I do nothing else, I can walk/exercise and do normal things like anyone else....one day a week. If I try to do more, I'm weakened and incredibly sore for days. A half a mile walk has never hurt my muscles this much in my life! I can't seem to make any gains at all, or achieve any conditioning. It is very frustrating.

It looks like either you have non-24 hour sleep wake syndrome (no, its not a joke) or you have just reversed your circadian rhythm. You can shift it back, but its going to be painful. If you really want to shift, there are two ways to do it, pick the easier one for you. You can either push your new "bedtime" later by one hour, every two-three days till you get to "normal" or you can pull it back. If you pull it backwards, you'll need to let yourself go for a day or two and find your natural wake-up point now...this is what you'll work from, not bedtime. When you wake, turn on as many lights as possible and stay near them for at least an hour. Every two to three day, back up your waking time by an hour adjusting your bedtime as you go. Don't sleep in or it will break the cycle shift and once you get to where you want to be, you have to rigidly hold your schedule there, or you'll lapse back. Go easy on yourself and don't feel guilty about it. This is hard stuff (I KNOW) and might mess you up autonomically, so be careful!

I do wear compression and have done strengthening exercises, but I am just as weak as before with long lasting soreness.

A previous post has caused me to think about this. I also have inappropriate leg weakness. My thighs and calves have shrunk and simply won't do what I could easily do before my POTS crash in 2007. I was also fit when all this started. I have now been taking Pilates for almost two years and it isn't any better. I recently tried Tai Chi, but my legs were shaking and would barely support me after the first session.

How many of us have similar symptoms? Have any of you found a fix? Even exercising while supine doesn't work, my legs just give out.

Any thoughts?

Here's a thought: make one of your kids the "cart manager" when you go to the store. It is their job to get a cart for you, every time you go to the store...even if it is a quick trip! That way, they learn to help you and you won't forget. My 11 year old LOVES this job! (He's been doing this since his eyes were even with the cart handle.) He even gets to push the cart, while my 8 year old loads the stuff I give him into it. The older one will bag at the register as well (future job training!)

TIP: beware of crazy driver syndrome though, it took a little while for him to become good at avoiding other carts and people!

I wish it were chostocondritis - my chest pain has never matched those symptoms. I was actually carrying the basket over my forearm - had my arm bent to hold the basket in the inside of my elbow - does that make sense? Also, I kept switching arms bc it was so heavy. I don't think I could have carried it in my hand with my arm extended - hard for my hand to hold - and seems the weight is so far away that it pulls more and seems heavier - does that make sense? I guess that's why I carried it the way I did. Any thoughts with that info?

Yeah, that is kind of the position I was describing: You were holding it up at or above your waist, but attempting to carry it out slightly away from your body? You were really engaging your abdominals to keep yourself up straight and increasing the pressure on your ribs (which are already full of baby.) Can you remember if your were holding your breath during the effort? Holding over your elbow was also compressing your arteries, much like a BP cuff would so it may have been fluctuations of the blood stopping in your forearm and then filling again. I think there was probably a physiological reason for your chest pain, instead of it being a new symptom. I'd be curious if you could repeat the whole thing and get the pain again.

I have an awful time with attempting to raise my arms above my head; I'll get dizzy and HUGE BP spikes. I can't carry things at waist level either, it is just hard! I carry down with my shoulders back and biceps engaged (that way it won't hurt my shoulder or neck.) Good luck on your next trip!

This might seem like a simple question, but HOW were you carrying the weight?

If I had 15 pounds in a grocery basket, it would be with both hands held in front, up near my chest, at least that would be my first impulse. Two things come to mind: if that was your position, your pecs might be weak, the other is that it would cause a lot of pressure by those muscles on the chest cavity almost like the valsalva which limits blood flow to the heart to begin with---plus you are pregnant. Add in upright tachycardia and your poor heart was starving for O2. I try to carry my groceries down on either side with my arms slightly bent and back to open the chest and engage the bicep so that I don't strain my shoulder tendons. I can carry quite a bit of weight that way without discomfort, but a laundry basket is a pain and it is much lighter. I always had a hard time holding the kids in front of me with both arms and ended up with that classic Mommy-one-hip carry (not great for post pregnant hips!)

Just the pregnancy alone is taking a LOT of your energy, so cut yourself some slack and give your little helpers something to carry instead of you (except the eggs!)

"Okay, now things are getting complicated. No wonder doctors don't take this on - it is VERY VERY complex."

Issie,

My primary doc told me that the endocrine system is the hardest part of medical school....most medical students learn just enough to pass the test and dump it all once it is over. Unfortunately there is no black and white with the body's endocrine soup, its all shades of gray made from every color. They are just now finding that the heart is also an endocrine gland/organ. There are just too many things that are not understood.

However, there is one way you can screw yourself up REALLY quickly.......by messing up your electrolytes! Even "healthy" people can mess them up quickly (heatstroke, vomiting, etc.) I take dDAVP and have to get my blood monitored at least every 6 months. If you start messing with Na or K, please let your doc do the necessary bloodwork to check that everything else is functioning normally.

As for the inflammation, it is an immune response. That can also be checked via bloodwork. There are several natural anti-inflamatories like ginger that I take since my nephrologist has nixed me taking any of the OTC kind and it helps.

My Mother avoids MSG like the plague, but I am not affected by it like she is. My big migraine trigger is the estrogen drop at the start of my "monthly." Wines also give me nasty headaches, so I avoid them.