firewatcher

Sandy,

It can take a while. You might try being seen on an outpatient basis. That will still take several months.

Good luck!

Cat Lady,

Yup, Klonopin and Codeine are both respiratory depressants. I can't take both if I want to wake up.

I asked my GP about this and gave him the full text of the study. He totally nixed this for me. He told me that my ANS testing results looked nothing like the study participants and that "bad things happen when you are put in motion." He was all for it if I would go see Dr. Levine and get a protocol specifically designed for me, but not the exercises in this study.

I must agree that the increase muscle tone in my core and legs from Pilates has helped, but my HR and BP are still all wonky.

I can take Mucinex without a problem, but can't take the Codeine with Klonopin.

As I have been that way for most of my life, I thought it was normal. Once I had my gallbladder removed, my bowels were better for a time, but they are back to "normal" now. Colace helps soften them a bit. Me and warm prune juice are best buds! Unfortunately, the most regular for me was when I was on allergy shots; the combo of no BB and the systemic reaction created diarrhea for a day and made the rest of the week easier to bear. My doc wasn't happy when I told him, and took me off the allergy shots for fear of anaphylaxis.

Oh, and I can guarantee that I have a slow transit time: anything by mouth takes 2-3-4 days to pass.......don't ask.

Easy, just breathe for a moment!(or at least try)

Firstly, if you are taking your BP with an automatic cuff every 20 seconds or so, it WILL NOT be accurate. To take BP, the cuff squeezes off the circulation, the refilling of the arteries takes a little time to normalize so those reading might not be accurate. Unless you have a beat to beat BP device, you need to wait a bit between readings.

On the flip side, when I had my testing at Vandy with the fancy equipment, my BP did something very similar to yours.

Do you wear compression? It really does help. A single cup of weak coffee helps me too.

The best med for me so far has been dDAVP. The next two are propranolol and klonopin. With those three together (and only together) I can make it through most days. These are all Rx meds, so that won't help you right now, but they could help if your doc thinks they are appropriate.

In the meantime, get some compression garments (I wear something like Spanx since I don't pool in my lower legs) and slurp on gatorade or broth. I know it is hard to be calm when you feel like you are dying, but try! Remember that this is the "fight or flight" response, so getting upset is NORMAL and BIOLOGICAL, but your rational brain can still get you through what your body is doing! Note, I didn't say "stop," just "get you through." Good luck and hang in there!

(((((((((((((Godsgal))))))))))))))))

More than you EVER wanted to know about the stages of puberty:

Stages of puberty

My son has gotten slightly taller and is showing most of the signs. I'm not sure that malnutrition/weight plays as big a part in maturity of boys as it does girls.

"This new med may PREVENT a neurotransmitter cascade."

THAT was my other thought. I wish there was a way to know.

My son, on the other hand, who is MORE severely affected than I am (I think ) has shown symptoms from the beginning. He cried non-stop and inconsolably as an infant. He had major issues with vomiting and GI pain, later severe constipation. He often got a migraine with vomiting if he was too active (like a long B-day party.) He was always exercise-intolerant. He had excruciating myalgias & nueralgias his entire life. We didn't begin to understand until puberty hit and he grew 6 inches in a year. Then, he got sick with a virus, began vomiting, was unable to eat. He laid in bed for almost an entire year before we were able to get him DXed.

IF your son is already showing latent dyautonomia signs, I wonder if the stimulant medication that is keeping his weight down and is postponing the big puberty growth spurt that MAY set him off...something to think about. In a sense, you are already treating him for dysautonomia with the stimulant meds. I get that it's for ADHD, BUT Mack takes concerta for dysautonomia. Is this new class of drugs supposed to be taken with concerta OR in place of it? It's treating the same problem a different way which makes me less afraid of it. That being said, I KNOW how scary it is to begin medicating your child. I think Mack took over a dozen medications at age 12

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Julie,

My son is NOT showing any POTS signs so far. He can run easily and doesn't have orthostatic issues with sudden postural changes like I always did. BUT, he does have headaches and the same sleep disorder that I have. He recently had neurofeedback sessions and the doc mentioned "anxiety-like" activity in his brain and sympathetic overactivity. She said he has almost no ability to relax.

This new drug is in conjunction with the Concerta and possibly as a replacement. My fear is that it will trigger a neurotransmitter cascade and cause POTS when the hormones kick in, especially if his appetite improves and he has that dreaded growth spurt.

Firewatcher,

This is a GREAT question! I too have a son who is on meds for attention issues. My son is 12 and a half and I know puberty is coming. I worry about him because he is the one who has issues all along. He has been diagnosed with Developmental Coordination Disorder also known as Dyspraxia in some countries. He was put on the meds because they believe the DCD makes it hard for him to process information and after awhile he just checks out cause he is tired of trying to keep up. I believe his whole system is out of whack. He does well on his Ritalin so I dont know. I have bad feelings about just having him on stimulants period but this whole POTS thing has me worried. Are you more concerned with the new med possibly triggering POTS?

KC

Yes, that is exactly what I am concerned about. This is a fairly new treatment for ADD and there is absolutely nothing about how treatment during puberty effects the brain in later life. Since these drugs directly act on dopamine and norepinephrine, I'd hate to trigger something either by putting him on it or taking him off later.

My son has ADD. He is on Concerta, but does not eat or sleep well. The doctor that he sees is suggesting Guanfacine (Intuiv or Tenex) which is an alpha-adrenergic agonist: inhibits adenylyl cyclase activity (reduce brainstem vasomotor center-mediated CNS activation; used as antihypertensives, sedatives & treatment of opiate and alcohol withdrawal symptoms). Clonidine is in this drug class.

I have hesitated thus far because these drugs specifically target the brain chemicals that we all have problems with. I don't want to start a POTS problem in him if he is susceptible.

He is approaching puberty quickly and he is one of the smallest, thinnest kids in his class. I am concerned about the future effects of his not eating, but I am also concerned about his possible POTS predisposition.

So far, he has NOT shown any of the signs that I did by his age. He can run and spin like I have never been able to do.

Do any of you have ADD kids who took meds like this and did not get POTS?

What were the signs and symptoms that clued you in to their ANS issues?

How old were they when it happened?

I know that I've been POTSy since I was very young (5 or 6.)

Dani,

Motherhood is hard whether you are sick or not. You've had over a year of sleep deprivation and providing care and food to an infant. Like everyone says about pregnancy weight, it took nine months to put it on, it will take nine months to get it off. In all honesty, if you were sick before your pregnancy, you will take longer than most "normal" women to recover. Your body is still adjusting to not being pregnant and your hormones are probably still wacky. Be gentle with yourself and cut yourself some slack.

Be well.

Hi Christi,

The hormone panels need to be taken in context with where you are in your menstrual cycle. Honestly, without a whole cycle of draws at exactly the same time every week, they don't mean much. When I had mine done that way, it showed that all my sex hormones were much too low for me to be ovulating, one test would not have shown that.

Whatever they show, keep a record of all of them. You will be able to track changes over time and probably catch a change or trend long before your doctor does.

Depending on your symptoms, you might add a heavy metal toxicity study (blood and hair.)

I recently saw a new doc with a fairly straight-forward medical question that had nothing to do with autonomic stuff. He asked if I had any other medical issues, I told him about my autonomic dysfunction. That started "the look," and prompted his question about the symptoms of my autonomic issues. As I went on, telling him about my HR and BP fluctuations and the strangeness that is the daily life of a POTSy, he had an ever increasing, wistful smile of disbelief broadening on his face. It would be about what you'd expect from someone telling you that they raise unicorns for a living.

What else could you possibly say to get this type of response from someone? C'mon, let go and have a little fun:

I have a Yeti living in my backyard...

I brought my invisible friend for moral support; she's going to drive me home...

This only happened after I got a visit from the fairy princess...

Actually, what is really sad is that if I'd said any of these, he'd have gotten far more serious and not smiled at all.

Well, I saw a hematologist after my GP told me to. It was slightly better than expected; he actually came into the room and talked to me. He even looked through my "big ol' binder of stuff." I was shuttled back and forth for several blood draws and then he tells me....."it must be normal for you."

The only caveat was one pending blood test: JAK-2 mutation. He said that if that is off, I'll be seeing him every six months. I won't get the results for a week or so since it is a genetic test. He did say that I need to get my kidneys checked out though.

and round, and round it goes.....

I thought I'd move this back up since we have quite a few newbies asking for tips. It is a not so oldie, but still a goodie!

OH Yeah. I remember a trip to Colorado, I should say that I remember Colorado spinning. I went to Yellowstone three years ago and it was hard too.

Whew, nursing a baby! That will suck more than the wind out of you! Remember that the milk has to come from somewhere, so it is pulling the fluid from your body. Replenish what you make. Dehydration will skyrocket your HR, as will sleep deprivation. Take care of yourself and drink lots of nutrient rich fluids.

Enjoy your sweet baby.

http://thedysautonomiaconnection.org/physician-list/ this has a Georgia dr listed...

This is my doctor. He's a nice guy, but he's not one for trying things. He will monitor, listen and then tell me not to worry about "it," whatever "it" is. But at least he knows about POTS. I'd use another doc if I could find one.

From Wikipedia:

"A phantom limb is the sensation that an amputated or missing limb (even an organ, like the appendix) is still attached to the body and is moving appropriately with other body parts. Approximately 60 to 80% of individuals with an amputation experience phantom sensations in their amputated limb, and the majority of the sensations are painful. Phantom sensations may also occur after the removal of body parts other than the limbs, e.g. after amputation of the breast, extraction of a tooth (phantom tooth pain) or removal of an eye (phantom eye syndrome). The missing limb often feels shorter and may feel as if it is in a distorted and painful position. Occasionally, the pain can be made worse by stress, anxiety, and weather changes..."

I am feeling phantom limb/life pains. Not that my limb/life worked all that great before, but that last 6 years have definitely stunk. I can remember what it felt like to live my previous life, my body remembers what it used to feel like. But when I try to live that way, I can't do it, it hurts! I watch my friends and remember what is what like to be upright and adequately functional. I remember what it was like to exercise and not have four days of pain to pay for it. I remember going to the doctor once or twice a year for colds or sinus infections, not all these specialists who look at me like I'm trying to pull a fast one.

I have friends (who get it) who ask me how I do it, to go on like I do. I think, you don't actually SEE what I DO to get by or how little I do. I appear normal, because I don't let them see me suffer. I take more medication than my 90 year old grandmother just to stay upright and keep my HR down and not urinate every last drop of fluid from my body. People take bathrooms for granted. I know where every one in my town is and exactly when I'm going to have to find one.

I'd like to do normal things with my kids. I'd like to do normal things with my husband. I'd like to plan my schedule around fun things instead of doctors' appointments and windows of polyuria. I hate having one wonky test done by a doctor who listens which leads to a referral to a doctor who won't listen or test for anything. I'm tired of hearing "well that's not normal, but it must be normal for you." I'm tired of being tired.

My life has been amputated, but I can still feel it.

Keep us posted!

(((((((((((((Julie))))))))))))))

I am feeling the need for another POTS party. Any new additions?

Because you have just started on your road to a diagnosis, I'm give you some unasked for advice that I wish I had had.

GET COPIES OF EVERYTHING!!! Tests, bloodwork, doctors letters, all of it.

Keep these all together and organized.

Make copies for the next doc and make sure you get it all back!

Keep a log starting now of symptoms, meds, dosages and what they do to you.

Take it all with you when you go to your appointments.

Good luck!

If you find someone, let us know. I see a cardiologist in Smyrna, but I can't say much more than he "knows" about POTS and that is the best I've gotten. I have not found anyone who is willing or interested in really treating it. One of the major cardiology groups in town has two docs (EPs) who will diagnose, but none of the other 83 cardiologists will treat it (and one of them in particular will screw you up!)

PM me.

It could be several things. The hot water could dilate your blood vessels, my HR is always higher when I am doing dishes. You could be getting a cold, or simply more dehydrated than normal. I would worry only if it doesn't come down when you stop.