Hi Princess;

I am new here, just joined today but I can really relate to what your daughter is going through. I read all your posts and have a few comments. First of all I have been working with Vanderbilt University in Tennessee which has an renowned dysautonomic center. I plan on going there this summer and I live in Wisconsin. After my diagnosis of Dyautonomia and Pots I also went the Mayo route and was give a date in 2009. My Neurologist is here at Froedtert which is supposed to have one of the "top autonomic clinics" in the country, and that is a joke. However he admits when he is over his head and told me I need to seek help outside Milwaukee. He told me that Mayo was not the answer because they focus on diagnosing, not stabilizing. I am a history professor and research is something I do so that is why found Vanderbilt. My Neurologist agreed and has jumped through hoops to get me help there, I am still in the process. I know the nurses there very well by now and I can get you a number if you want it.

I was wondering if your daughter has ever been diagnosed with dysautonomia? (The tests would be the Tilt Table as well as the sweat test, and a sweat gland biopsy and a few other tests as well, I think there are 4 all together). The reason why I asked is because the big debate with Dr's is whether the POTS is primary (with a specific set of symptoms) or whether the Dysautonomia is primary (which causes POTS and other symptoms or manifestations). My Dr's are debating with themselves but I know that my Dysautonomia is primary and POTS is secondary. In the last 8 months I have been going downhill, and it sounds like you daughter has too. I have found out through many tests that my bladder no longer voids on its own, but my stomach muscles have taken over, that the muscles in my lungs are affected, by vision is worse and my tolerance to heat is worse than ever. I suggest you keep your daughter out of any situation where she will get hot, because that will set off her POTS. I have severe problems with my legs and have been in physical therapy for 2 years and I could not walk without it. I am also on a lot of medication to help with the pain and weakness in my legs. It is VERY important that you find someone who understands this disease, and MAYO is not the place.

I am still working at this point as a professor, so the comment by someone that a Dr. who has the disease might not be a good idea I thought was not an accurate assessment. I still work and yes it is difficult, and some days I think I should quite, but I am very capable of being lucid, and professional so I highly recommend that you find comfort in this Dr's ability. I have to take about 25 pills a day to function, and at night I am unable to function but I still work.

I am sorry about the length of this, but I am really touched by your story and feel as though your daughter needs to be diagnosed with dysautonomia. My problems started with back surgery and I was told my a dysautonmia specialist that any time you are cut into it will bring on symptoms. Did your daughter give blood during that blood drive? A simple blood draw could have brought her dormant dysautomia to the surface.

DrDawn -

I agree with you that the dysautonomia is primary. I just spoke with my Dr. about this last week. He said that POTS is just a piece of a much larger puzzle. POTS is the dysautonomia's affect on the heart. It makes sense to me that the POTS is secondary because so many of us suffer with SO many other symptoms controlled by the autonomic nervous system. I'm sorry you are having such a tough time and I hope you can get to a place where you feel better soon. Take care.

Hi Drdawn & trebleclef,

I will apologize first and foremost for my lengthy and private msg but due to the nature I felt it necessary. Lengthy msgs written to me are not a problem at all!!! I love reading and researching.

We were never formerly told that she had a Dysautonomia by the first Cardiologist she saw. Correct me if I'm wrong isn't Dysautonomia simply a medical term for Autonomic Nervous Systems Disorders? I am so new to this and have read so much that I feel as though I am on information overload. I'm not sleeping b/c my mind won't shut off with all the info I've either heard or read.

I found POTS at the bottom of her TTT results. That same evening I looked it up online only after watching Mystery Diagnosis episode: "The Woman Who Kept Falling Down". I believe this lady suffered for 2 decades before receiving a diagnosis at Vanderbilt University Hospital and as a result formed NDRF to help others in the same situation. I recall she mentioned Dysautonomia so I searched the web and the first condition listed was POTS. I was amazed that all the puzzle pieces started to fall into place.

See the Cardiologist that diagnosed my daughte did not tell us she had POTS all he said was that she was fragile and needed medication. Thank God I watched the Discovery Health Channel and looked more closely at her TTT results.

She was diagnosed with IBS at 9.5yrs old and 5 months L8R she began her menstrual cycles. Only they weren't normal by any means. Excessive blood loss 24/7. She quickly became anemic and even anemia was a in question depending on what doctor saw her. Longest cycle was 2 months long with extreme heavy bleeding. We were bounced around to every Specialist at Tex. Childrens Hospital and no one could figure out why she bled so much. All tests were normal. There were no sings of blood disorders showing up nor is there in our family. Therefore they said she would outgrow it. Well its been nearly 8 years and it is only controlled by BC. At one point when she was about 11 she was on 2 or 3 pills a day. Didn't stop just made her ill. Then they tried estrogen, progersterone, testosterone, and nothing worked. Finally she was simply diagnosed with Abnormal Unterine Bleeding.

It is under control now with BC pills we after trying several different types we finally found some that work, but I still often wondered if there is something that doctors are missing.

She never was an inactive child so she didn't fit the typical mold the doctors refer to as overweight couch potato. She was always in Ballet/Tap/Jazz & Hip Hop classes & camps.

She slept to and from everywhere we drove to. The minute we would drive off she would be out cold.

Since the onset of her cycles she began to experience dizzy spells, lightheadedness, pressure behind her eyes, spots floating in front of her eyes, and heart pounding in her ears. Her pediatrician said she needed pretzels and gatorade b/c her bp was too low. Gave us no indication that there was help out there or that if this continues things could get worse.

Because her bleeding has been under control for a couple of years she decided to participate in the school blood drive. So yes, that is when her life changed and came to a steady decline in her health. Which is what led us to the Cardiologist who diagnosed her with POTS.

Her lowest bp to date was recorded at 79/40. Her heart rate surges more than 30bpm while her bp drops upon sitting or standing.

This leg pain is a new symptom that surfaced on 5/5/08. I was told it is not typical of POTS and that perhaps this is the bigger picture bringing us to the POTS diagnosis.

The new Cardiologist/Electrophysiologist we are seeing wants her to see a Rheumatologist to rule out an Autoimmune Disease. He is a very compassionate, patient, and seems to be very knowledgeable with Dysautonomia and POTS. We do like him. Is he the perfect one for her? Only time will tell. She has been weaned off of all the medication and will undergo further testing. She first on Midodrine which made her feel worse and more episodic. Then she was place on Florinef and Toprol which seemed to be fine for the first week and a half then she came crashing down again. Since the medications were not working for her he suggested weaning and testing absent all medication. He did mention something about testing to see if we are dealing with a malfunction or failure (not sure which) of her Autonomic Nervous System due to the severity and numerous symptoms and conditions she has experienced. I hope I am relaying this correctly but I thought he said all signs were pointing to a severe case of POTS but wants to make sure there is no underlying disease which is causing POTS symptoms. I'm not sure if that makes sense. We are exhausted from going to doctor to doctor.

So my dilema is whether this leg issue is a rheumatology symptom or is it orthopedic. I can't help but wonder if the numerous episodes where she passes out onto her knees face forward is finally affecting her joints? I do know she is in a lot of pain and now her knees pop as if something is snapping in two. This she has never experienced.

Any contacts would be greatly appreciated Drdawn. I will admit after watching DH channel I looked up the Vanderbilt University since I believe the doctor that diagnosed this lady was from there. What I thought I read is that you have to be at least 18 years of age so I never called. Now I'm not certain if that was for the ongoing studies or for actual doctor appts. Perhaps I should call anyway since she will be 18 next month.

As for the person who stated that going to a doctor with POTS would not be in our best interest....well I take that with a grain of salt. I think he would've been great. He would not only have a working knowledge but have first hand experience with this debilitating condition. So if things don't work out and I feel we are getting the run around yet again then perhaps I will seek him out as well and just keep going down the list.

Let me say it is comforting to know that that there are successful stories of people who are still functioning and living out their dreams. I can imagine that it must be very difficult and at times debilitating and my heart goes out to all.

Again please forgive the long message. It is hard to shorten ones history.

God Bless!

Well, so much for the private message.....LOL
I told you my mind is on overdrive.....

Hi,

I just wanted to share that some of us diagnosed with POTS do suffer from joint pain and pain in general. After numerous MRI's I am still not sure what is causing pain, numbness and tingling in my arms, legs, and under rib cage. The problem is that doctors believe that most patients have only one condition that explains all their symptoms. In most cases it's true but I don't think we're the average patient. That is why it is so important to find the right doctor. I recommend that you read as much as you can, take notes, and then formulate a list of questions (it's hard to remember when you are sitting in front of the doctor). Armed with facts from the experts, you will be able to test their knowledge. I am a nurse and the first to admit that medicine is not an exact science and doctors are only human. They can't know everything although they would like us to believe they do.

Off my soapbox now.

I feel for you and your daughter.

Hi again Princess. What really grabbed my attention in your post was the comment the Dr. made about malfunction or failure of the autonomic system. The tests he mentioned are imperative to finding this out. I assure you they will be the most important tests your daughter has had so far. Malfunction comes in two ways, full and partial. Full malfunction means that both the sympathetic and parasympathetic autonomic nervous systems are affected (do some research and find out what controls what in your body). Partial malfunction means that one of the two mentioned above is affected by this disease. At this time I know I have full malfunction. Failure means that the autonomic system is not malfunctioning (or simply broken), but failing all together (this means that everywhere it is affected, it is total failure of that nerve system controlling a very specific function (such as bladder and lungs) Failure is rare, and I doubt you need to be worried about it, however the tests are IMPERATIVE. I would not even go to the rheumatologist as it is a waste of time and money, this is not autoimmune.

You need to start getting aggressive and it seems as though this cardiologist/electrophysiologist knows something about dysautonomia. That is rare. After the first time I collapsed and ended up in the hospital I was assigned to an amazing Cardiologist who put me through every heart test to try and figure out why I had the tachycardia and irregular arrhythmias. He sent me to an electrophysiologist who was arrogant (they tend to be this way) and tried a heart ablation with no luck, so the problem still exists. However, I now know I have POTS (which he did NOT pick up on) and that an ablation is a bad idea for people with POTS. He sent me back to the cardiologist and by this time I was diagnosed with POTS. He knew nothing about this and actually spent a lot of time researching it before I saw him next. He continues to be my Cardiologist and I also have a separate Electrophysiologist.

Tell your daughter's Dr. that you want the Dyautonomia tests. If he cannot offer them (remember there are 4 tests, so do not settle for less) Vanderbilt is a good place to call. Here is the number to start with. 615-936-4981. Her name is Diane. There is a difference between the clinic and the research department. The clinic will diagnose her, the Research department is for people who are already diagnosed and are trying to stabilize their condition (i.e. me...)

Please pay close attention to her symptoms. When is she dizzy? (Is it because she is over heated? Did she stand up too fast? or is it all the time) How is her vision? (blurred, double, graying), how often do her legs hurt and is it after she has been walking a while? The way is was explained to me was this. I have what is called peripheral neuropathy in my legs. That means the autonomic nerves (small fibers) that tell my legs to walk are damaged. Therefore I only have a certain amount of energy per day (like a gas tank) and when that gas tank empties, I will have difficulty with weakness and lots of "sensations" in my legs. I take a lot of medication for my legs and it helps me. Otherwise I would be in a wheelchair by now. I cannot say enough, to be careful in heat. This also means inside as well. Do not wear sweaters or other heavy clothing while inside. I almost passed out Christmas Shopping because I was careless and did not take off my coat. I almost passed out yesterday in a furniture store because I had a jacket on inside, I am still recovering right now from that because once you start that domino affect of annoying your autonomic system them everything is affected, including the POTS. So right now I feel as though I am "in a daze" and my legs got so weak I actually sprained my ankle pretty bad yesterday. Watch her closely and pay attention to what she does before she feels like crap.

I hope this helps. It is actually therapeutic to talk about this. She is lucky to have a mother who cares so much about her, many people do not understand the disease and it is easy to lose friends and family understanding. Unless they see her struggles first hand, explaining them is simply difficult.

Lastly I would like to pass along an analogy. It is the symbolism of a zebra. There is an organization that represents this analogy I am about to explain, but I do not know the name of it off hand. Here it goes. When you hear the sound of galloping what do you automatically think is coming? a horse (of course well sometimes the sound of galloping is actually the coming of a zebra, the last thing someone would expect. This can be compared to people like us who are desperately seeking answers. The Dr. hear (see) the symptoms as the galloping of a horse, and assign simple reasons for them. However our symptoms are those of a zebra, and it is rare that Dr's figure this out. It takes years and years to find the right one, who does not assume the symptoms are a horse (the simple explanation) but a Zebra (the rare explanation). I have a wooden carved zebra that reminds me that I have a struggle ahead, and it somehow gives me the courage to continue to battle.

I've been thinking about zebras recently, since my good friend in medical school was telling me that medical students have it hammered into their heads: "when you year hoofbeats, think horses, not zebras". this makes sense in most situations, but the eventual result is that doctors miss the zebras out there...

i've had so many doctors say to me "common things are common" - so let's rule those out. the problem is that once they rule them out they usually have no other ideas.

Drdawn,

Her dizzy spells are severe upon getting out of bed as well as from a sitting to standing. Mornings seem to be her worst enemy. She has trained herself to get out of bed very slowly from the onset of her dizziness at age 10. So I know this isn't b/c she rushes out of bed. Taking those first few steps in the morning are equally as bad. Sometimes it takes all her strength to just walk to the bathroom. She often says she feels dizzy all the time as if she was on a boat that was teetering.

The sun gets to her leaving her fatigued and dizzy but she is much more intolerant to the cold than heat. It doesn’t matter how many articles of clothing she puts on she just shivers and feels as the cold is penetrating deep in her bones. She always carries a jacket with her even in our brutal hot humid weather. Where most of us feel as though we are going to burst into flames as we walk outside she sighs in relief. I know she says it feels good but at the same time she can’t take too much of it. In reflecting back at all the times we would go to amusement parks, SeaWorld, or the beach, she always did become symptomatic within an hour of being there. Most times we would have to head back to the hotel, or find a shady spot near the misting fans. I figured she was just like me as I am extremely heat intolerant. I know I drove my mom crazy as a child always complaining about the heat and humidity. I would burn easily and develop a rash each time I spent too much time in the sun. Actually, I’m still a bear to be around when it’s hot.

Anyway enough about me, the pain in her legs seem to have improved somewhat, not much but it’s a start. We did see an Orthopedist on Monday and a Rheumatologist yesterday. The Orthopedist did see some swelling in her right ankle and was concerned with the bilateral pain that there could be some form of autoimmune disease. We told him we were scheduled to see the Rheumatologist the next day so thankfully he decided to leave the blood work to them. He was a very mild mannered doctor which was a great relief since most we meet are not. I hate those blood draws they leave her so incredibly weak.

The appt. yesterday went well, we liked the Rheumatologist and she was very interested in POTS and wants to work in conjunction with the Cardiologist, PCP, and Orthopedist. She is the first doctor we’ve seen who explained in detail the difficulty in detecting some forms of autoimmune diseases but assured us she would not leave us hanging. This was an avenue we had to take being that most of my family members have been diagnosed with some form of arthritis. If everything is normal then I guess that leads us back to just one place….Dysautonomia.

I am relieved that my daughter is not passing out on a regular basis anymore. Yesterday was the first time in about a week. This time it was my fault. We were driving to the doctor’s office, I was focused on the street names and I could hear her saying something but I was paying more attention to the signs. When finally my brain kicked into gear and realized that she kept repeating the same words…red light!!!! red LIGHT!!! RED LIGHT!!! Yes, I stopped in time before the intersection but it was enough to startle her and the next thing I knew she was out cold. I have noticed lately in the past 8 months that sudden breaks while driving usually cause her to faint. I felt like crawling under a rock for causing her to blackout.

Thank you so much for the name and number to Vanderbilt. I will certainly keep that at close bay in case we decide to go that route. Right now I feel the need to give this Cardiologist a chance since he is trying to get to the big picture. A little stability would be a good thing for her as well where doctors are concerned.

I loved the analogy of the zebra. Her Endocrinologist was the only doctor that told us that we were possibly dealing with a zebra if all blood work were to come back normal which they did. He explained it much like you did saying that most doctors are trained to look to the obvious and to the extreme but there are so many rare diseases in between. I will share yours with my daughter.

Take care my prayers are with you,

Becky

Becky -

I am so sorry you and your daughter are going through this. Just like I've told other moms on this forum knowing that there are young people going through this actually gives me strength to keep fighting and keeps me from sinking too far into a "why me" mode. My heart really goes out to your daughter. Please let her know I am praying for her (and you) and hoping the new Drs. can help her find her "normal" again.

I'm not really sure what to do with the information received after my daughters follow up with the Dysautonomia Specialist. We were told that Dysautonomia has been ruled out and if she did indeed have POTS she may have outgrown it. Based on this last TTT he is more inclined to state that she has Orthostatic Hypotension rather than POTS since it has been well documented over the years that she has low BP. Although she passed out on the table, the bigger issue was that her legs gave out midstream due to the extreme pain upon raising the table to 80 degrees. He doesn't go up to 90 degrees like the first Cardiologist does. At first the doctor said that he wasn't going to pay attention to this TTT since the pain in her legs may have altered the effects of the test. Later he changed his line of thinking and determined as a result of her blood volume being normal along with the TTT he feels we may be dealing with an autoimmune issue rather than dysautonomia on top of OH. I'm very confused now!! I started reading up on OH and it seems to affect people in their mid 60's. So why does my 17 year old have it?. He also said the fact that she experiences moments where she is dizzy all the time is not a symptom of POTS. POTS patients feel better once they lay down. Most times she does feel better except on her bad days...then she feels as though the room is rocking.

So she is placed her back on .2mgs of forinef in the am but this time he included 4grms of salt tablets daily two in am/pm. He wants to treat her Hypotension and said that while the medications from previous Cardio's were correct their treatment plans were wrong. We have since discontinued the salt tablets on our own after witnessing the severe and immediate reaction within seconds of ingesting the tablets. Her throat tightens up, she has diffculty breathing, and she becomes extremely nauseous. The symptoms lasts for quite a while and they come in waves until she eventually falls asleep. That in itself is scary. It is not worth putting her through the agony on top of everything else she is going through. Perhaps this may sound ignorant but if her sodium levels are normal then why the tablets?

So if this truly is OH then I suppose my time on this website should come to an end. The odd thing about this last appointment is that we walked away with two very different emotions. On one hand we were relieved but confused to hear that she does not have a complex disorder that can't be cured, but on the other hand we were also empty. The empty feeling that something has been snatched away from us. You see all the puzzle pieces were finally coming into place once she was diagnosed with POTS, and now they are disrupted again. So are we back to square one? It certainly feels like it!!! POTS has been the only diagnosis that made sense to us, the only one that she could relate to on all levels.

Yesterday we got some results from the Rheumatologist. We've been praying that the mysterious joint pain would be revealed. Naturally I don't want my daughter to have an Autoimmune Disease either but I do want some answers. Her markers have jumped nearly 20 points again. We're still trying to figure just what type if any she may have. We learned that if you test for Arthritis or RA too early in the stage that your markers may not be very high or give you a true indication of what is going on. Makes sense that from the onset on May 4th the hospital said she was fine and the inflammatory markers were slightly elevated but still considered normal. They did not see any reason to further test and they also did not detect any inflammation at the sight. Yesterday Dr. Vo did acknowledge significant amounts of fluid in my daughters knees. The good thing is that she told Heather that if nothing else she needs to remember that this is not in her head. I was thankful for that! Even if they don't find anything based on her blood work it doesn't mean she doesn't have Arthritis. She mentioned that there is a small percentage of people who have reactive RA which the origin is never truly identified, that may be Heather's case.

I asked to have her tested for lyme disease remembering that we found a tic on her one year while visiting relatives in upstate New York. We took her and the tic in tow to the doctor and he assured us that it was not a deer tic. Dr. Vo informed us that she has heard of cases of lyme surfacing as much as 12 years after a bite. I know there is something going on b/c her fingers, wrists, elbows, shoulders, and low back are stiff and painful now. Not to the severity of her legs but today she is moving even slower. She is now taking 30mgs of Prednisone for 10 days in hopes of reducing the swelling and pain. I know this doctor won't leave her hanging like most have. She assured us that if she can't help us she will find someone that will. She did confirm that the tilt may not have produced acurate bp results due to the pain in Heather's legs and once we get her under control she said we will discuss which way to proceed with her bp/hr issues.

With that said I assure each and everyone of you that I will continue to keep all of you in my thoughts and prayers. I won't give up the fight on my end but perhaps I have to travel a different avenue for now. So all that I can do is sit back and wait to see what the next blood work reveals.

I thank you all for welcoming me with open arms and offering wonderful advice and sharing your experiences. This website has been an amazing outlet for me and I feel as though I have made many freindships that I will hold dear to my heart.

I wish that I could close by saying that Heather is feeling better and is improving, but I simply can't. Instead I am saddened by what I am observing. It is as if I am watching her body slowly giving out system by system. One positive, she did go back to school yesterday in hopes of finishing her last two weeks left of her senior year. I know it is taking a toll on her body but she is happy to be with friends that she will soon be saying goodbye to as they move on to their respective colleges.

Hugs to all,

Becky

Hi Becky,

If it is OH, that is still a form of dysautonomia and definitely you should stick around on this forum!!!

And I think your dr is wrong to say that with POTS patients feel better when they lay down. That may reduce the symptom of lightheadedness or shortness of breath that is exacerbated at that moment BUT there are still daily constant symptoms and each person can be different. Read the link on the main forum from Dr. Grubb. That information is the best!!!

I feel for you and your daughter. I don't know what state you are in, but please keep going until you and your daughter are satisfied with the diagnosis and treatment plan!!!

Hi Becky -

My heart goes out to you and your daughter and you both will stay in my prayers. Orthostatic hypotension is a form of dysautonomia. You are still in the right place. Also, I agree with WantMeBack. When I have a POTS flare-up, my pulse may go down when I lie down and I may not feel as faint but dizziness is my number one complaint. I often feel like I'm rocking on a boat or being pushed and pulled for hours after a bad episode and I'm virtually useless for awhile. As many can attest to on this site, dizziness with dysautonomia is a HUGE symptom and not always associated with the high heartrate while standing.

You asked about the sodium tablets. I think for people with low bp we need more sodium than the usual person does. Although our levels may test normal it is not enough to keep our bps up. It's just like hydration. I require much more water than the average person. Even though it may seem like I've drank enough for two people, I still need extra to keep my heartrate stable. Having said that, I don't know if it's worth it to give your daughter the tablets if they are making her so sick. Maybe she can get the added sodium through high-salt food or drinks (like pickles, olives, V8 - not the best tasting but maybe easier on her system?).

I wish I could give you an answer. I can't imagine what you are going through. I really hope you decide to stay with us though. It definitely sounds like she has something autonomic going on.
Remember, as hard as it is when you are dealing with a child who is ill, try to find the time to take care of yourself and find some respite. It's important for you and ultimately for her. My best to you.....

You are all right, I really do feel like this IS the best place for me. As I look around at all my friends, no one is going through what we are going through. Everyone has been very supportive with lots of love and prayers but no common experiences, but this site has given me the opportunity to vent, read success stories, and make new friends. Thank you!

Heather did find Orthostatic hypotension listed as a form of dysautonomia so my confusion is why the doctor said otherwise. Maybe it is time to move on and find a different specialist. I am just so tired of doctor hopping and he seemed so.

I still have Vanderbilt on my list so that may be our next step, but this joint pain is so debilitating for her I feel as though we have to get it under control in order to move on.

Trebleclef it is true I need to take care of myself as well. Sometimes I feel so drained that I have little to no interest to do the things I like...rollerblading, sewing, or even walking my poor little dog.

Today I am going shopping for a graduation outfit. Hopefully Heather will make it through her day in school.

Hugs to all,

Becky

I've been meaning to ask this but often forget...does anyone ever experience spots or floaters in the line of vision. My daughter often has blurred vision, tunneling, black lines and or blacked out vision. Now for she has been seeing black bubbles as she describes it with pain behind her eyes. Could this be due to a drop in bp as well? Or should I be really worried?

Becky

I believe spots and floaters are common with bp drops. When mine is low it can affect my vision, especially if I have a near syncope event. Tunneling is usually something that can happen with fainting as well. Also, for me, some of my medications greatly affected my vision.