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bkweavers

Trouble Standing And Walking W/pots

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I've never done this before but, then again, my daughter didn't have POTS before! My 11 yr.old has been diagnosed with POTS as of 7 months ago. We've been to numerous doctors - pediatricians, ENT, cardiologists, etc. Her 2 biggest symptoms are headaches and being dizzy all of the time. It never goes away for her, even when she lays down. The last doctor hospitalized her to run some tests -EEG, heart monitor. She was seen by neurologists, cardiologist, psychologists and after 2 days, the doctor tells us her heart rate and blood pressure are normal and she's healthy. Healthy! I wanted to scream at her and say, "But she's still dizzy!"

We are not going back to that doctor. She wasn't willing to fight for our child to get her better. The question I have is - "Does anyone else with POTS have trouble walking on their own, sitting up, or standing." As of right now, our daughter can't do anything but recline. She can't stand at all or sit and when she walks short distances, she is hunched over and grasping for things to hold on to. We try to have her walk this way on her own, but it's hard for her. The last doctor took one look at her trying to walk and stand and said she has never seen that in her other patients with POTS. But, she seemed to give up quickly when the tests came back normal. My husband and I would appreciate anything you can tell us. We're very new to all of this although we've been through health issues with this child before. We aren't sure what doctor to go to at this point, but our gut tells us that something should and needs to be done for her. She is going to school part-time and really has little fatigue. She is on Florinef, Pindolol, synthroid and ibuprofen for the headaches. The doctor we saw last wanted her off of the beta blocker and on neurontin. My husband and I decided not to put her on anything different until we get to a doctor we trust. We are possibly looking at Mayo or Ohio for her.

Any prayers for my daughter and our family would be very much appreciated. I look forward to talking to all of you and knowing that our family and our daughter are not alone in this.

Brenda

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Hi,

Welcome aboard. Sorry that your daughter is sick at such a young age. I have many of my family members that have this disorder and I do have it myself.

Most people with POTS have dizziness and problem walking.

I am giving you a list of some links that you might find interesting to read. They are very informative.

Overview of POTS

http://www.dinet.org/pots_an_overview.htm

Symptoms

http://www.dinet.org/symptoms.htm

Mechanisms (what is happening with your body while you're symptomatic)

http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm

Causes of POTS

http://www.dinet.org/what_causes_pots.htm

Detection of POTS and other autonomic dysfuctions

http://www.dinet.org/how_is_pots_detected.htm

Treatments (what helps)

http://www.dinet.org/what_helps.htm

What to Avoid (what makes things worse)

http://www.dinet.org/what_to_avoid.htm

Myths

http://www.dinet.org/myths.htm

What does the research have to say

http://www.dinet.org/research.htm

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If you're planning on Ohio, why not go see Dr. Grubb or one of his staff (i.e. his nurse practioner)? He is an EP cardio at Medical Univ. of OH, and he and his staff specialize in dealing with POTS and similar disorders. See the physician listings on here on DINET for names and locations of doctors who typically see patients with autonomic disorders.

Nina

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Hi,

Welcome to the forum. I hope you find it as helpful as I have. I am sorry to hear about your daughter--my thoughts and prayers are with you.

I have been ill for 2 1/2 years with a recent diagnosis of an autonomic disorder. When It first became disabling, we thought that it was due to migraines, because that's how it presented itself. I have had continual headaches since then. Severe ones ending in the er. I not only had the headache, but I couldn't stand or sit without feeling dizzy and sick. I spent most of the last 2 1/2 years in the recliner. It didn't bother mt to lay down. The neuros all thought that this was headache related. After two years we discovered that I had orthostatic Hypotension--from there we ended up with dysautmonia.

Anyhow, after we started to figure things out--she said "How would you like to try speed?". I thought she was kidding--never heard that before. She started me on dexidrine slow release 5mg twice a day. Within two days, the symptons were barely there. I could stand and walk--it was unbelievable. I stopped sweating while walking to the bathroom. I could breathe easier. I still have the headaches and some nuesea. I have to pace myself to not overdo. I drink alot of propel. I just started florinof--hoping that might help with the headaches--have to wait to see. The dexidrine has allowed me to to so much more than I have been able to in the last two years.

I, too, am taking synthroid. I have found that I really need to keep mysel hydrated. The symptons are so much worse when I don't keep up one the fluids.

The dexidrine may not be right for everyone and every doc is different. Just thought I'd let you know how it worked with me. Good luck--I'll be thinking of your family.

Sincerely,

Sue--Pacer412

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hi, welcome to the site!

i?ve been having troubles standing and walking (and sitting although less frequent) for some years now. i am diagnosed with pots in 2002 but think i've been having some kind of (dys)autonomic issues all my life. i was this child with health issues also, which made me feel uncomfortable as no one could explain why.

my trouble with walking changes day by day (or hour by hour). most of the time i can't walk properly (waving my arms as if i'm on a cord), or the floor seems to come up but there also are times where i walk better. i think you should try to encourage your daughter to keep walking/sitting, you could hold her hand or arm to make her feel more balanced. take her serious as it must make her feel frightened and/or scared and she needs to know her parents are the ones to rely on. when i "walk" to our car (about 15 meters) i always need a hand/arm to hold on to. walking outside seems to be much more difficult (i think because of the pavement is a bit bumpy, but also the light very much bothers me).

hope this helps a bit, wishing you and your daughter the very best.

corina :(

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I am so sorry to hear about your daughter. If you can get to Dr Grubb, I highly recommend it. I know that when it is your child that is suffering, we as parents would do anything to take their place. But since we cant do that, what we can do is fight with everything in us to get them the best care possible. Your daughter is blessed to have parents to fight for her and not let a doctor that doesnt understand stop you. I have times when I can walk straight, like a drunk woman. I have not found a doctor yet who understands but I am not stopping till I do.

Your family is in my prayers that God will guide you and lead you and also for his healing to be granted to your daughter.

mary

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Hi, Brenda:

I don't have children, but I can imagine how frustrated and powerless you must feel to watch your daughter go through this. I'm so sorry that she is suffering from POTS.

When your daughter has trouble walking, is she having visual changes at the time, such as blacking out? Does her hearing get sort of "muffled?" That can be caused by a sudden drop in blood pressure on standing, and there are some positional manuevers that can help.

How was she diagnosed with POTS? Did they do a tilt table test? It seems odd that the doctors would declare her "healthy" but have her on so many medications. Were the doctors changing their mind on the POTS diagnosis? Did she have high heart rates that were normalized by the beta blocker?

The most misunderstood part of POTS, even within some of the medical community, seems to be the perception that once the blood pressure and heart rates are "normal" that the symptoms should go away. POTS is much more than a variable, tachycardic heart rate and blood pressure problems. The medicines we all take to help with those two symptoms are much like a splint for a sprained ankle. They don't cure the problem (POTS); they just help to alleviate some of the symptoms (high heart rate and blood pressure changes).

POTS is an illness that requires a pretty long period of recovery. It wasn't until after having this for a year that a doctor finally confessed that to me. He said, "So by now, you've realized POTS is a long-term illness." Maybe the doctors don't say this at the outset to avoid creating the expectation and subconscious fulfillment of a long recovery, but personally, I think this information helps to prevent fear when we don't just magically get better overnight.

New York Medical College seems to focus on Pediatric POTS, and many of the forum members who have children with POTS have taken their children to Mayo Clinic. This article has an excellent layperson's explanation of POTS and is one of the few to verify that POTS patients also experience symptoms while sitting.

Like your daughter, I spend much of my time reclined and become symptomatic even in that position. The only way to truly minimize my symptoms is lying without any elevation, usually curled on my side. I can recline for about 3 hours or sit for about 1 hour before becoming symptomatic, and symptoms are immediate on standing. So I did a lot of research to see if that is a part of POTS. :( My understanding at this point from the research and my doctors is, yes, POTS can cause symptoms even in those positions.

KUDOS to you and your husband for supporting your daughter so unconditionally and for following your instincts when it comes to her medical care!

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I'm sorry your daughter is having so many problems.

Have you tried an Ear, Nose and Throat doctor that specializes in inner ear disorders. Sometimes the problems with vertigo and dizziness involve the eighth cranial nerve and that won't show up on ekg's and heart monitors. Sometimes we tend to attribute every symptom to one thing, and then discover it's a whole other problem.

Does she feel dizzy, or does the room feel like it's spinning, or does she feel like she's spinning? Is there a position that works for her? Like she feels better lying on one side or the other or on her back? There are a few conditions that can cause this. I have meneires, which really has nothing to do with my pots, but makes me dizzier than a doorknob. Vertigo and dizziness.

I know the last thing you she want to do is see another doctor at this point, but with that particular symptom, it's what I would do. Good luck sweetie...morgan

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I know the last thing you she want to do is see another doctor at this point, but with that particular symptom, it's what I would do. Good luck sweetie...morgan

I agree with Morgan. I've had orthostatic symptoms all my life, but never felt dizzy and off-balance until April this year. I assumed that this was simply the latest addition to my worryingly expanding list of symptoms, until an ENT diagnosed me with vertigo. Perhaps your daughter's problems are not related to POTS.

Here is an excellent website listing all the conditions that can cause dizziness: there seems to be more than 20. I hope it can help you.

http://www.dizziness-and-balance.com/disorders/index.html

(This is my first post, by the way. Hi, DInet. )

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Dear Brenda,

I am so sorry to hear about your 11 year old daughter. It must be so difficult for your family, as I know it was for mine when I was initially ill and then didn't "get better" even after I was finally diagnosed 2 years later. Westchester Medical Center in Valhall, NY is supposed to have a good pediatric program--I'm too old, darn it. I initially had to spend alot of time just resting and sleeping for almost a year. Talk about role reversal, I "practiced" walking again holding on to my daughter's arm. It is easy to be deconditioned with this illness and important to keep your leg muscles strong. For whatever eason, exercising in the water can have a therapeutic effect. I also joined Curves for 1 year after about 3 years and found that they had good equipment for the lower body, but looking back I wish I had a recumbent bike at home. Differnet plain warm soups with extra salt was a bonus at first. There is a tremendous overlap for some of us with Chronic Fatigue Syndrome that has only recently been treated as a serious condition in the pediatric population. Neurontin was a big help for me as well--the only medication which I didn't react to. I hope she is eligible for home tutoring and support from your school system. Martha

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Balance problems may be caused by numerous disorders, including those of the middle ear. It is very important to decipher whether your daughter's problems are due to vertigo, lightheadedness, sensory disturbance, or loss of postural reflexes. Only doctors specializing in balance disorders would be able to differentiate among the many causes of her gait problem, and I think that pediatric neurologists and ENT physicians would be the specialists most helpful for this. Good luck!

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Hi,

So sorry to hear about your daughter! I would imagine having POTS as a young person would pose its own set of issues. As far as the walking and standing goes, that was my biggest problem when I was fist "struck down" with POTS. Though I didn't know that's what I had until I saw Dr. Grubb in 2006.

I remember having trouble walking from the couch to the door every morning to go to work. Before seeing Dr. Grubb my local cardiologist had me on too much florinef and Midodrine and I actually think that made walking worse. I no longer take either and am only using cymbalta as prescribed by Dr. Grubb. So one thing to look at is how the meds are helping her or possibly causing new problems? I have heard from other people that florinef can cause trouble with walking. Also are they checking her potassium on the florinef? Even a low normal can be a problem from what I was told.

One of the many many tips I got from Dr. Grubb about life/POTS/walking was: "In order to improve a person with POTS needs to do what their body wants to do least" He was referring to standing and walking. I tell myself that every time I want to avoid walking. After 3 years I have improved a lot but I am only about 70-75% of what I once was in terms of orthostatic tolerance.

Good luck!!!!

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What is your daughter's HR and BP? My HR and BP are often "normal" especially with medicine. My cardiologist kept telling me that I could not be having POTS symptoms while my vitals are normal. I know after having this for a few years that you CAN have symptoms even when your vitals are normal. If you read through old posts on this forum, you will see that others have experienced this too. This is especially the case if your daughter is taking meds - the medication could be helping to bring the BP and HR in the normal range.

I do think it is worth going through the ear testing, though I went through this and was tentatively diagnosed with an ear disorder on top of my POTS...only to eventually find out that all of my symptoms were POTS. It sometimes takes a while to find black and white answers with this stuff, but you will find the forum to be very helpful.

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Wow, it sounds like she is going through a lot! I hope it gets better! I don't know if all of that was present before the medications, but I know I have had some of these symptoms increase with meds. For an 11 year old it looks like she is on quite a bit. Also, the vestibular issues would also be worth looking into.

Good luck!!! :)

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