My 18 year old daughter (135 pounds/does not smoke, drink, or use caffeine) is currently seeing an Electrophysiologist that is STUMPED and we have not received a diagnosis. She has had the following symptoms for (at least) one year:
1. Resting heart rate varies between 70 to 140 bpm.
2. Upon standing, her heart rate immediately jumps 30 to 40 bmp
3. Walking heart rate varies between 110 tp 170 bpm.
4. Chest pain.
6. Loss of energy.
7. Small toes on both feet turn purple upon standing.
8. Doctors have noticed her heart rate is EXTREMELY erratic (goes from normal, to extremely high, and back to normal within seconds). Note: This is while she is in a sitting position.
9. Doctors have had a hard time finding a strong blood pressure reading at her ankle, yet it is normal at her knees.
10. Blood pressure used to be fine, but is now slightly high at times.
She has had an EKG, Holter Monitor, Event Monitor, blood tests, 24 hour urine, Echocardiogram, and tests to rule out a tumor on her adrenal gland, ect. Everything checks out fine. Her doctor recently put her on a 12 1/2 mg beta blocker (twice per day), but that only lowers her heart rate for about 15 minutes. PLEASE HELP!!! I am VERY concerned that her heart is working much too hard to keep up with her fast heart rate. I would truly appreciate any input, suggestions, or advice as to why this happening. Thank you for your help.
Based on the testing that she has had and your mention of adrenal gland tumor, I am assuming that they ruled out a Pheochromocytoma.
Given her symptoms, have they suggested Innapropriate Sinus Tachycardia or POTS (postural orthostatic tachycardia) as possibilities?
Ankle Brachial Pressure Index (ABI) result can help diagnose peripheral arterial disease (PAD). A lower ABI means you might have PAD. Did they rule this in or out?
I can imagine your worry. As a mother, as well as an RN, it is worrisome as well as frustrating, when our children are sick and there are no clear answers as to why they are experiencing the symptoms they are. Let me know if I can assist you any further.
Thank you for taking the time to comment on my post. Yes, the doctor has brought up IST and POTS, yet isn't sure one way or the other. As far as the ABI test, I will ask about that when we go to her next appointment on January 13th. Woudn't it be abnormal for a teenager to have PAD?
Thank you for sharing your story... It sounds like you and my daughter are experiencing a lot of the same sympytoms. I will keep you updated as we learn more on the 13th. Please keep me updated on your situation as well. Maybe between the two of us, we can figure this out. :) Take good care of yourself!
Why do these symptoms seem so incredibly common? I have everything listed from #'s 1-6, everything else is questionable.
Your teenage daughter most definitely has something "aggravating" the heart, which is causing the erratic and increased heart rate. It could be anything (since the tests are coming in fine, like myself) - from an actual disease/heart problem to a simple infection/virus (which, can actually be life-threatening).
I'm not a Doctor (in fact, far from it), so I can't go into the technical terms as much as I'd like to. Last thing I want is to give a false lead. But, if a beta-blocker at least seems to be working, perhaps try another. I've heard Metaprolol, which is one of the newer ones seems to work alright (so I've been told) - and has a sort of "timed-release," allowing effective relief of symptoms throughout the day with only one tablet. For myself, I hate medications and beta-blockers, so refuse to take them.
I get plenty of chest pains, dizziness, and am generally extremely (!) fatigued - even at the point of waking up after a 12 hour sleep. Tell her to just stay calm, and reduce as much stress as possible. Everything will be found in due time.
I understand you're frantic to find an answer. My mother, who accompanies me on all my Doctor's visits, seems more worried than I am most of the time. Keep doing the tests, make sure everything in the body is at least "par" (all the minerals and such), and try to take things easy. Be sure she's drinking well above the average amount of water per day to keep hydrated, and still, keep her off of caffeine/alcohol.
Like I mentioned in another post here, I'll be seeing an electrophysiologist in the coming months. Should I find anything - I'll be sure to let you know! Just as your daughter, I've been fighting this "thing" for over one year, and desperate to find an answer. I'd love for you to keep us updated, as well.
Take care, and best of luck to you and your daughter. :)
In response to your question about PAD occuring in a teenager...Yes, this would be a rather odd thind to occur. I was just re-reading all the symptoms you listed as well as all the tests that have been done...Have they considered Lyme DIsease? This can be difficult to diagnose. It usually takes more than a simple Lyme Titer. Alot of the symptoms you mention your daughter to experience, do occur in people with Lyme disease.
I really hope that they are able to confirm a diagnosis sooner than later. Best of luck and please keep us updated.
Thank you VERY much for taking the time to re-read my daughter's symptoms. I did a search on Lyme Disease and I don't think her symptoms coincide with the disease. She has never had a rash, lung problems, liver problems, spleen tenderness, joint pain, seizures, nerve defects, meningitis, Bell's palsy, or any type of behavioral change. But, she does have a change in heart rate and dizziness. What were the symptoms my daughter has, that you thought might be due to Lyme disease? Do you think I should have her tested for Lyme disease, just to rule it out?
I took care of a patient in the hospital who was diagnosed with Lyme but didn't exhibit all the classic signs associated with the disease. Of the symptoms you mention your daughter having, this patient had:
It is quite possible that she doesn't have Lyme but why not do a simple ANA to officialy rule it out as a possibility. Has she had hormone levels evaluated? More specifically Thyroid. An imbalance of TSH (Thyroid stimulatinf hormone) can also cause some of the symptoms listed. I'm always trying to think "outside the box"
Sometimes it's when Dr's are looking for common diseases, they get complacent, and the rarer diseases aren't even considered or thought of as possibilities, quite simply put...they're missed. Let me know if I can assist you any further:)
I too have a lot of the same symptoms you have described your daughter has: fatigue, very rapid heart rate and it also increases with just getting up, chest pain, dizziness, my high blood pressure is high though, I've been put on medication Tiazac and it has lowered it at times as well as the chest pain and tightness is not as often, but my heart rate is still quite fast and still have high blood pressure.
I've had ECG, 24hr Holter, MIBI test where they discovered I have excercise induced LBBB (left bundle branch block), 24hr urine test to rule out pheochromocytoma - came back normal, and I'm now scheduled for an angiogram next Friday Jan 9/09 at 9am. My family doctor and Cardiologist figure the only thing left is to make sure there is no blockage.
All of my problems started after I had a really bad cold. There had been other people that have posted the same things after a cold... not sure if it is a virus but I'm willing to have any tests to figure this out.
I have 3 children 11, and 10 year old twins, it has been very hard to keep up with my family needs, all of this started since September, I was very active excercising regularly 3 1/2 hours a week, I have never smoked or drank, I did drink Coke but now I can't as it does speed up my heart rate more.
My family doctor is also sending me for an abdominal CT Scan to check every organ to make sure they don't miss anything else, I guess she is thinking they won't find a blockage in my heart next week???
I'll keep you updated here and please let me know if you find anything else that may work for your daughter.
I do very little at home, my husband does most of the housework, I've been reading lots and just trying to relax but it is hard when I have no answers and 3 children to look after and I feel sick most days and pretty weak.
Just wanted to let you know that I had my angiogram on Friday and it all went well. They did not find any blockages, my heart shows to be very healthy. As much as this is a blessing it still leaves me with a mystery for my symptoms.
How's you daughter Lisa? Have you had any other tests Aaron?
I go see the Cardiologist on Tuesday and my family doctor on Friday, not sure what else they will be doing now.
I'm so happy to hear the angiogram went well, and your heart is healthy! The reaction for my tests are just the same; I'm thankful they're fine/negative - but I'm no closer to finding the problem.
As for any new tests, I did more blood work last week, checking for Lupus (since it's in my family history) and Lyme's Disease. It's a stretch, but at this point, I need to cancel out any possible alternatives. I'll get the results this week.
I'm also curious as to how Lisa's daughter is keeping up. If there's any new information, be sure to share!
Good luck on your Cardiologist + FD appointment this week, Karin. Hopefully they'll find out what's wrong with you (although there's a fine line between "good news" and "bad news," just like I talked about above).
You and your daughter are in my thoughts and prayers. I have had Lyme disease and associated tick diseases for over two decades. They are VERY Tricky to get accurate testing for and you must see a "Lyme Literate Medical Doctor" = LLMD. These types of diseases DO cause very unusual symptoms. Ones outside the norm that can affect any major body system like cardiac or central nervous system....since Lyme and its coinfections from unseen and unfelt tick bites are infectious AND inflammatory to the body. And typically confusing things more in the cyclical nature....known as "relapsing and remitting illnesses" ... the symptoms wax and wane...sometimes subsiding as the immune system of the host is trying to cope with the invaders!
I am no physician, but I don't see these things as that big a stretch as a possible 'answer'. I know you will leave no stone unturned for the love of your child. (Be extra careful with your money of course since searching for answers can be so costly.) Lyme disease is a "Great Imitator" disease -- Just like Syphilis used to be called. Even the TV show "House" has used tick illnesses a couple times as examples of how weird and destructive these infections are and tough to diagnose in the BEST of hospitals. There are very good support and information groups online with lots of caring parents for reviewing tick diseases. Best wishes on this difficult journey and I hope all is well soon!!
~~ Bonnie H.
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