So Not Fair

[maryfw]

This is so not fair. My 17 year old who is 6 feet 4 inches tall and weighs 150 pounds and works out 5 times a week has High Blood Pressure. Go figure that one out. My bp is low and no one is my family has high bp unless they were overweight or old.

Mary

[Mrs. Burschman]

I'm sorry, Mary. For some reason, it seems like body size doesn't always correspond with blood pressure. My brother-in-law (my husband's brother) is thinner and taller than my husband but has had to be on several medications for blood pressure since medical school.

I'm sending good wishes along for your son!

[pat57]

mary,

Seems to me a kidney problem could do that to a young person. Has his Dr. said anything about that?

[morgan617]

How many times has it shown as high and how high is high? Sometimes it's just a fluky thing, unless he has several done at different times of the day over a period of time.

You can keep a log...say for two weeks. Take his BP every day, at different times, under different circumstances. Say, after a meal, when he first wakes up, after he's been active, after he's been resting. You might want to get ortho static ones too.

If he is high more than he's lower, then he needs to find out what's going on. Sometimes you find it's just a bit bouncier than other peoples, more reactive to stressors and things. Good luck. morgan

[MomtoGiuliana]

Has he been evaluated for POTS/dysautonomia?

[maryfw]

The thought of having him evaluated for POTS had not crossed my mind but sounds interesting. I will talk with my cardiologist.

The doctor is running tests on all kinds of things, like his kidneys. He has had trouble with his BP for about 6 months now. In March they thought he had a bad infection of some kind that affected his liver count and we chalked the higher bp up to that but that was 6 months ago. Now it runs anywhere from 140/95 to 168/107. The medicine is a low dose.

But I am intrigued by the suggestion to check for POTS. Does that sometimes make your bp go up? It makes mine drop.

Thanks for all the concerns and prayers.

Mary

[morgan617]

My BP runs very high. Look under baroreflex and you will find that a portion of us do run high BP's. Good luck!

[MomtoGiuliana]

When my POTS was very bad I had very varied bp, which included high readings, especially standing or right after standing. Ironically, increasing salt intake brought my bp down.

[runningshoe]

Things to consider:

was he nervous or did he rush to the dr office

diet - does he eat a lot of salty foods

Kidney issues

My BP has been high since early 30's but sometimes I had high readings earlier in my life.

[dizzygirl]

when i crashed out in 2002 with bad pots my bp's where qite high.. and had been running high for a while.. and i was like 19-20 at the time....i had spoardic high bps's before this tho.. Uhm i experience both very high and very low bp's and everything in between.. it the nature of the potsy beast...

hope you son can get proper diagnosis

[morgan617]

I just found out my son, who is all of 25, has precancerous lesions all over his esophagus. It always seems to feel much worse when it's your child doesn't it? He is hyperparathroid too, so I am beginning to suspect a POTS component, however am not sure I want to put him through that stuff in this area....

[maryfw]

I just found out my son, who is all of 25, has precancerous lesions all over his esophagus. It always seems to feel much worse when it's your child doesn't it? He is hyperparathroid too, so I am beginning to suspect a POTS component, however am not sure I want to put him through that stuff in this area....

I will pray for your son as I pray for mine. Nothing gets a Mom ready to fight for whatever it takes, like her children.

Mary

[morgan617]

Amen to that, Mary!!!! morgan

[Bella127]

mary,

I understand your frustration..

I was 15 when diagnosed with POTS, and I have a twin brother who has never developed any problems/symptoms related to POTS--although he has sleep problems with insomnia lately. So it's funny sometimes who POTS will "target", and I'm not sure there is any certain "type" -- although the fact that my brother doesn't have one inkling of POTS makes me feel that the genetic predisposition is more prevalent in females, which we already have seen a pattern of to some degree (strange, because I also have the "POTS look" - pale skin, thinner build, tall, blonde hair/blue eyes, and my brother is the opposite - tall and thin, but dark hair/eyes/complexion). Since my POTS came about after an onset of bronchitis, who knows, if my twin got some kind of viral illness, if it would "trigger" POTS with him? There's no way of knowing, and I hope that he never has to find out!! I feel that overall my system is more sensitive than his-- he has been sick before, and it never affected him how it did for me.

Also, sometimes POTS doesn't take the "classic" route in how it shows up in people. A couple years after I was diagnosed, my younger brother, who was probably 14 at that time, was having gastric problems; horrible stomach pains where he would be unable to function/go to school. Long story short, he was also diagnosed with POTS, even though he had no history of low BP/unstable HR; the dr. attributed his stomach problems to POTS ("stomach migraines" due to POTS--but who knows if this was just the dr. saying "I'm comfortable w/POTS and know enough about it, and your sister has it and is on florinef, so let's go with that, and put him on meds for POTS"- who knows.) Although, I can understand the diagnosis from a gastric standpoint-- in that many of us POTSies have delayed gastric emptying, issues with nausea, bowel problems, etc.

My brother was put on elavil, and soon after, his stomach problems seemed to fade, and eventually he weened himself off the elavil & his stomach has never bothered him since. (Like I said, though, we can never really know if the stomach problems went away on their own throughout adolescence, or if it WAS a POTS-related thing that the elavil eventually helped.)

I can tell you though, that as much as I understand that you don't want to drag your son down the "POTS road" with testing, etc. (& you don't want to open your mind up to other possible symptoms he could have if he has this symptom of high BP now- "I hope that doesn't mean that he will have purple feet, shower issues, and develop a love of salt" ), -- if it does end up being something POTS-related, the sooner he "catches" it, the better. And, he is luckier than most because he has a mom who is familiar with symptoms/treatments, and who will will understand better than anyone else. Let me tell you, (and I'm sure you can relate) it means the world once you have someone who "gets" what you're going through -- not to mention that you don't feel "crazy" anymore, like it's all in your head.

For me, although neither of my parents have POTS, I felt that they were behind me from day one, and they still are. Sometimes it's almost as if they know my body better than I do--even one of my brothers at times will have to "remind" me -- "careful, maybe you shouldn't bend over and pick that up-- I'll do it.", "whoa- careful, you're getting up too fast" or "its really hot today, make sure you keep drinking. or maybe you should just stay in the A/C." and that kind of thing. I can be so stubborn, and even though I am careful to avoid triggers, some days I go around like I don't have POTS simply because I think I can ("think" is the key word... ). That's when it's great to have people around you to kind of remind you, "even though you look fine, you have something actually wrong in your body. you need to watch out for yourself. when you're being too stubborn, we'll watch out for you."

In these respects, I think it would be a good thing to have him evaluated for POTS. Not to mention that sometimes, POTS is so "off the wall" with symptoms that it's almost impossible to say "these symptoms mean its POTS, these symptoms don't." (aside from the general "definition" of what POTS is). Take someone like me, who is heat intolerant...I get very sick in high degrees of heat and cannot function; whereas some with POTS can tolerate heat just fine, but are cold intolerant. Medications that are godsends and let us have highly functional lives may just as well be a placebo and not affect another person at all.

And who would have thought that my younger brother's stomach symptoms (no history of low bp, now low bp/passing out/wacky HR at the time, no heat intolerance, etc.) could be attributed to POTS --we had completely different symptoms.

So, you never really know--and trust me, I'm glad if anything that my parents kept pushing when we all knew something was wrong, and these doctors weren't listening --oh well, on to the next doctor who would listen!

It is obvious that you love your son very much, and are trying to get to the root of his health problems. Just thought my experience with the road to diagnosing, and the way POTS can swoop in, kind of "disguised" (as it did with my younger brother) might help to hear. I hope you find a cause to his high BP soon--I know it is frustrating, but nothing is worth more than that moment when you get an ANSWER. Because I know he has a loving mom, I have no doubts that he will find his answer soon!!!

Keep us updated!! Hope this helped.

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morgan,

I will be thinking about your son, and about you and your family. Nothing health-related is easy to go through, and the most important thing is that he has all of this support around him!!! The only thing I can say from experience is, as I said in this mile-long post to mary ..you just never know until you try. I definitely understand your not wanting to open up the POTS "can of worms" so to speak, on him as far as testing, etc., --however, if that ends up being the answer, you will be glad you did it.

Was the road to getting diagnosed easy for me? Of course not. Was it longer than I would have hoped? Sure, and for most people that's the case. But do I ever wish I didn't go through it? No way, absolutely not, no chance. I know it is trying/exhausting, but like I said, there is no better feeling than having that answer in front of you and feeling validated. So, the only thing you can do is just exhaust every possible avenue you can think of-- and, trust me, I went down some kooky "avenunes". (thought of acupuncture and hypnosis, did biofeedback, went to neuros, infectious disease doctors, endocrinologists, got told I was crazy by psychologists who probably needed counseling way more than I did ..you name it, until finding dr. grubb )

so all I can say to both of you that at least if you do testing for POTS, you can have the peace of mind in knowing either that yes, it is POTS, or no, it isn't. and this way at least you've eliminated one possible "suspect".

good luck to both of you! I'll be thinking of you. keep us updated!!

Chrissy

[morgan617]

Thanks Chrissy, you sound like a wonderful young lady! We will be working on a few diagnostic things from the looks of it. The input we get from the young people with these disorders is so helpful to the parents! (Especially when dealing with a boy as opposed to a girl... ) you are a sweetie! morgan