lorrie

I'm so glad you had a positive experience...a doctor with good listening skills and knowledge to boot...wonderful!!!!

Funny that you mention Mast cells. An allergist I used to go to for allergy shots actually suspected Mastocytosis. He ordered 24 hour urines and bloodwork. Nothing was conclusive. I took Benadryl for awhile without much improvement. I still take one from time to time. It was several years ago that the allergist tested for Mastocytosis. More recently, I went to Vanderbilt and the doctor thought my episodes could be triggered by MSG in foods. Testing was non conclusive once again. I carefully stayed away from MSG for over 6 months and was still having episodes. I have also been tested for Porphyria by a urologist because I have blood in my urine often and at times it is a dark purple color. Those tests are non conclusive...surprise, surprise. My POTS doctor says that more than likely I am suffering with POTS, NCS, Mastocytosis and Porphyria because my symptoms are so intense and so intermingled. He said testing for some of these disorders is difficult because the timing has to be just right to measure the chemicals, etc. that they are looking for. Please let me know what you find out. Best of luck to you!!

Thanks for your responses. Seems like most of us have had a turn at "chasing our tails" trying to get to the bottom of our illnesses. I would love to find a way to educate EVERY doctor about dysautonomia.

A few recent posts got me to thinking about how far many of us have traveled to get answers to all our crazy symptoms and how many doctors we have sorted through to find one worth keeping. The farthest doctor's appointment I have had is a four hour drive away. It was a true waste of time and very stressful. I have probably seen over 25 doctors and had hundreds of tests of various kinds. I have been hospitalized about 16 times over the past few years and poked and probed and humiliated... It is enough to send you running and screaming the opposite direction of any medical person or building (if we could run and scream without passing out...lol) Thankfully, I have now found a wonderful team of doctors only 1 1/2 hours away and feel like I am the most important patient they have. That is such a rare and fantastic feeling!! My wish is that each and every one of us will find that perfect fit with a knowledgeable doctor and be treated with the respect we deserve. How far have you traveled? How many doctors have you "test drove" before finding that right one?

firewatcher, I don't think anyone here will be able to give you exact numbers the doctors will be looking for. Everyone with POTS has different numbers and everyone has been tested differently depending on their doctor. I just wanted to chime in here that if you don't get the answers you need at Vanderbilt, you should try Dr. Zia in Bowling Green, KY. He isn't that far from Nashville and has a much shorter wait list. He is very knowledgeable about POTS. I have ended up finding a wonderful network of doctors in Bowling Green and had struggled with all this for over 10 years until I found them. Anyone in traveling range of Vanderbilt should definitely consider Bowling Green...they have some awesome doctors.

Well, I made it through the first 3 days of school. My principal asked me very first thing for a letter from my doctor. When I told her I didn't have one, she got mad. She went and called the BOE and asked if she could send me home. They said no and she was really mad. The next day, I had a meeting at the BOE with the personnel director. He said that she has no right to demand a letter from the doctor saying I need no accommodations and that if I would bring him something explaining what I need to keep working at my current position, he would help me. He called and told the principal that she needs to leave me alone and he will take care of it from here. He advised her that she could be looking at harassment charges if she keeps on my case. I was glad that he is willing to help but I hope she won't make the year harder on me because she has been reprimanded. Anyway, I have only had one small episode at work and it only lasted a few minutes. I was able to sit down and wait it out without too much interruption to my work. My students understand that I may need to sit down more often and they are fine with that. They just come to my desk for help instead of me running around the room to go to their seats. We worked out a way to prevent all of them being up at the same time and they are doing great with it. I have an appointment with the doctor Monday after school and will be getting my letter stating what accommodations I need. He has always been willing to write that letter, but not one saying I need NO accommodations. He doesn't want to get me in a bind with my job. I am bringing as much work as I can home with me so I can do it in my recliner. I am also coming straight home and taking a nap for an hour or so. My husband is taking care of cooking dinner and getting my daughter's homework, bath, etc. (This is a big deal because he just recently began to understand how much rest I need and started helping around the house.) My daughter climbs up in the recliner with me to do her reading homework so I don't feel left out. I think it is going to work out!! My sense of relief is huge...I have been so worried about what was going to happen. The end of the last school year was very tough and the principal was very hateful about my illness. Out of fear of losing my job (and my insurance), I was pushing myself so hard that I was severely symptomatic. I am finally figuring out that I have to take care of myself and not push myself so hard. I no longer feel guilty about needing to rest in the afternoon in order to be able to work the next day... Thanks to all of you who have sent words of encouragement while I was getting this figured out.

Before I got control of my episodes, I was having them 4-5 times a week. I stopped going to the ER because they really didn't help and didn't take it seriously. You are so close to your appointment that I would probably wait. However, you are the only one who can make the decision. Trust your instincts.

The tone of your post really shows your desperation. I'm so sorry you are having such a tough time. I relate to having a different doctor for each body part...it is frustrating and finding a team that will work together is a struggle. I went through this for 10 years while all the time having my health go down the drain. I finally had to get real good and mad and tired of the run around. I got busy and found a good POTS doctor and he has been the one to appoint the other specialists I needed. They are all working together to compile the information and get me headed in the right direction. Right now, I have a cardiologist, an ENT specialist, a GI doctor, a sleep specialist, my PCP and my POTS doctor who is a neurologist. The six of them are working together to get me on the correct medications and I am beginning to feel better. Having my neurologist suggest the others has helped assure that they are networking and sharing information. It has made all the difference in the world. Before, I had 7 or 8 doctors, but they all were focused on a different body part and no one was talking to the others...I was spending twice as much time in a doctor's office and accomplishing nothing...just spinning my wheels and spending my money. I have to add that my PCP is the same one I had locally for many years. That is one doctor I wasn't willing to give up because even though he had not been able to help with all my strange symptoms before I was diagnosed with POTS, he never gave up on me and he kept trying to help. Now, he is in contact with my POTS doctor often and he has gotten excited about learning all he can about my illness. He is also wonderful for all the regular medical stuff and is the only doctor I have locally. The rest of them are an hour and a half away. If I ever have to be hospitalized locally, I wanted someone familiar with my condition nearby. He is also the one they all call about medications so one doctor is overseeing that. It is nice being able to call one place for refills, etc. I tell you all this to encourage you to take charge of your care. You have the right to demand the best care possible. You also should focus on finding one doctor who will take charge and help you find a network of specialist. Some people are afraid to switch doctors and don't want to go to a "friend" of another doctor...I found that those "friends" turned out to be doctors that trust each other and work well together. Good luck to you!!!! Hope you feel better soon.

My episodes come on quickly and take anywhere from several hours to 2 days to be back to normal. My episodes include: -flushed feeling in my face -arms and hands go numb -excessive sweating -pounding chest -nausea -stomach pain -severe headache -confusion -inability to talk -uncontrollable shaking -bp drops drastically -hr rises -trouble swallowing In between episodes, I have fluttering or pounding in my chest several times a day. I am also prone to migraines and extreme fatigue. I have a constant feeling of being hot no matter what the temperature. What you are doing sounds like a POTS episode to me. Just remember that everyone may have slightly different symptoms and may react to an episode differently. I have the added problem of loss of bowel control and I haven't heard many others have that happen. My POTS doctor explained to me that your body reacts in whatever way it needs to in order to protect itself.

The sleep apnea isn't a trigger. Just a coincidence that I was at the sleep center when it happened. I was glad I did because they had all the info from the monitors to see what my hr and stuff was doing. I awaken with a POTS episode about once or twice a month. I did this before and after the CPAP machine. My machine helps keep my apnea under control.

The reason the doctor won't write the letter is that he is trying to protect me...I'm glad he won't write the letter. If he gave the principal what she wants, he would basically be saying I am fine and then they don't have to accommodate me at all. She actually asked for something signed saying I am released from the doctor...no way...I have to have him. By "formally" disabled, I think the woman at the BOE meant that I am not considered disabled by the state. If I was, I wouldn't be worried about fighting them...I would be receiving a disability check and staying home taking care of myself. This is all so frustrating...I just want to work and am asking for a few accommodations such as being able to sit when needed, having someone else walk my students to lunch, etc. so I don't have to go up and down the hallway several times a day. I am also expected to stand outside in the afternoon doing pick up duty for the car riders. I can't do it...I passed out several times last year because of the length of time on my feet and the heat. I really think the principal is trying to make things hard on me because she thinks I am a liability. The only thing I am willing to sign is something saying I won't sue them if I fall and hurt myself. I have no problem with that...I just don't want to be treated unfairly. I don't think my limitations are out of control. Just need to be able to avoid situations I know are going to make me have an episode. Teaching at an elementary school does make it difficult to sit. I also know my students are willing to come to me for individual help instead of me running around the room. I could figure out a way to make it work...she just doesn't want to hear it. My sister's husband's brother is an attorney and I may talk to him to see what he thinks I should do. I would prefer to skip the principal and go through the BOE because they really have the ultimate say in if I can stay or if I have to go. Maybe the attorney can discuss it with the personnel director and find out what I have to have to get a little consideration for a few accommodations. Anyway, please keep my in your thoughts and prayers while this is being worked out. Thanks for listening.

I know that stress makes my POTS symptoms worse and the last few days, I have been unable to do anything around the house. I am so weak, tired, dizzy, and nauseated. I think some of this is because I teach and school starts back in a few days. I am so worried about not being able to do it that I have made myself sick. Last year, I missed alot of work due to POTS. Everything from fainting at school to waking up very symptomatic and unable to go in the first place. My principal started demanding a release form signed by the doctor saying that I do not have any limitations at work. He refuses to sign anything because he knows I am not able to stand for long periods of time and the stress of the job sets off an episode at times. I really want to have a good school year, but I am worried about my stamina and if I have an episode at school again. I think my principal will make it hard on me. Thankfully, I work with a great bunch of people and they donated sick days last year to help me out. I don't think she will allow them to do it again. She is on my back so hard and has even made remarks that I am faking my symptoms. I have gone to the Board of Ed and talked with the personnel director, but she says I don't have any legal rights for special accommodations because I am not "formally" disabled. I don't think they are going to help me out at all. It all depends on my ability to stay healthy and get through each day... I love my job and can't afford to quit, but I don't know how it is going to work out. I don't have the energy for a long drawn out fight to keep my job. Sorry...just worried and needed to share.

I'm so glad you have a great doctor! That is such a breath of fresh air from the majority of them. I have dealt with so many doctors over the years that it's ridiculous, but I finally found a POTS doctor who I adore and he found me a cardiologist who is a gem of a guy too. I'm sticking with these two to the bitter end...lol The really great thing is that I have been able to turn my PCP around too. He was not at all knowledgeable about POTS and wasn't able to help me for years and years. Well, I finally got him enough info. that he researched and is now actually getting into the whole POTS thing...he even ordered a book by Dr. Grubb for me (at the suggestion of someone on this site). I feel so relieved to have a good team on my side now...it took long enough.

I awaken often having POTS episodes. This is one area where I seem different from most who post on this site. My hr will be out the roof and my bp will bottom out. For years, I was told I was waking with panic attacks (no surprise there...that is the first answer you get) but my POTS doctor said it is actually not that uncommon to do this. The thing that finally proved I was not "crazy" was when I was having a sleep study done and was hooked to all these monitors for my heart rate, breathing, brain waves, etc. and woke up in a major POTS episode. The sleep tech ran in the room and flipped on the light and asked me to sit up. That was not a good idea because I fainted into a pile in the floor. I normally lie still and wait for it to pass. However, he was able to see it happening before I felt it because of the monitors. He wanted to call an ambulance, but I was able to convince him I do this often and I wasn't going to die. The embarrassing thing is that when I awaken doing this, if I don't lie still, I have a loss of bowel control. Here I was with this cute little guy tech and in such a mess...I had to wait until I felt better and then take a shower in the doctor's locker room. The reason for telling this story is to help you realize that you can have a POTS episode while lying down. After my shower, the tech thought I would be too awake to continue the sleep study...boy is that funny...all I want to do after an episode is sleep. I convinced him to hook me back up and we went on from there. Needless to say, I was diagnosed with sleep apnea and had some great documentation for my POTS doc as well...two for one!!

I am curious as to what types of GI problems you have. I have alot of stomach involvement with my POTS episodes.

Radha...the decision to use them was after LOTS of testing. I am ashamed to admit that I didn't really ask alot of questions...I just took the doctors advice. My bp usually runs around 125/72 (I have been on high blood pressure meds for years to keep it in this range). My bp only drops during an episode usually. My husband checks my bp during an episode and if my bp isn't too low, I take the nitro.

Sorry...meant autopsy, not biopsy.

After watching the Mystery Diagnosis show about OI, I couldn't help but wonder if POTS might have contributed to my son's death. Linda, the lady the show was about, lost a baby too and was told it could have been partly from her low blood volume and lack of oxygen. I was not diagnosed in 1999 when my son was born. I had two bad episodes while pregnant and had to have had the low blood volume and crazy hr and bp that I have now. He lived 6 days and the doctors were unable to tell us what happened. He looked like he had had a stroke...his hands were contracted and only his brain stem was active. I refused a biopsy, but we did have genetic testing and the genetic specialists was never able to find anything conclusive. Knowing why won't bring him back, but I have struggled with this ever since his death. I miss him so badly and would love to know what he would look like now. I really think POTS must have played a part...that makes me extremely sad. If I had had a diagnosis then, I wonder if I could have prevented losing him? Sorry to be depressing, just have this on my mind again after seeing that show and wondered if you all have any thoughts on this.

I use a nitro patch on days that I have that achy heart feeling and use nitro pills for severe chest pains. My cardiologist said it won't hurt me and will help me recover more quickly. It does help. Just curious if anyone else uses nitro.

I think you did the right thing going to get checked out. Anytime something is different or more severe, it is smart to get it documented. Most times it will turn out to be more of the same, but you never know. I was visiting a friend in a rehab center after she became paralyzed and I began having severe chest pains...it felt like an elephant was sitting on my chest and I was sweating profusely and my arms went numb...very scary! A nurse that was taking care of my friend called an ambulance without asking me and I was glad she did. I ended up in the hospital for 7 days having a heart cath, nuclear stress test, nuclear swallow test, scans, MRI, and tons of other tests. I have a 50% blockage and was the first time I knew I had CAD. I got a fantastic cardiologist out of the deal who understands POTS (he actually works closely with my POTS doctor) and feel like I am finally understood by at least these two wonderful docs. I would not have chosen to have all these extra tests, but very glad I did now. I had been avoiding doctors for years because of the frustration that had built over time...you never know when that one great match will turn up. I am so happy with my cardiologist that I brag on him all the time. He gave me a prescription for nitro patches and nitro pills. I was afraid to use them, but at his encouragement, started using the patch on days I have that achy heart and it has helped. I actually used a nitro pill a few weeks ago when I again had the sitting elephant pain and it helped greatly.

The therapist probably wouldn't tell a diabetic to go anywhere they want and put it out of their mind...they have to plan to have insulin, etc. with them and be ready if they become symptomatic. POTS is a very individual disorder and everyone has to learn what they can and can not do and how they must plan. You are doing the right thing...

I'm so sorry that you are having to deal with this. If they knew about all the limitations before they hired you, I would pursue this. Did you have documentation on what your limitations were when you got the job or was it verbal? Don't let them run over you. I am going through a similar situation. I teach and school starts next week...my boss wants a release signed from my POTS doctor that I have no limitations. He WILL NOT sign it. I am in the process of fighting her at the board of ed. It is frustrating because we don't feel well enough to work full-time, but we have to fight years and years for disability. I don't know what the answer is, but I am sending you big hugs!!!!

I guess I'm weird, but I got a chuckle out of some of these answers. It's amazing how odd the public can be at times. I can relate to those of you who have had juice pushed on you. Almost everyone (including medical people) insist it is from low blood sugar and nothing you can say will change their minds...lol Thanks for taking time to share!

Hi friends, I have good news...about 7 of my family members came to my house to watch Mystery Diagnosis. No one said a word during the show and I couldn't really "read" their faces. Anyway, after it was over, my sister who has been the hardest on me actually said she learned alot and after seeing Linda and Dan and what they went through that she believes I really do have a "real" sickness. I know this 30 minute show hasn't cured all the doubts and questions, but at least it opened up things for more educated discussion and my dad and sister actually asked me some well meaning questions. I think it opened their eyes a bit and has given them a foundation to build on. My sister is going to look at Linda and Dan's website and do some research of her own. That is all I could possibly ask for...just a stab at learning and being supportive. By the way, I'm still not going shopping with them and I'm okay with that and so is my sister. She apologized for the "stupid" remark she made about the wheelchair too. I feel like this has been a positive experience!!!!! Thanks to all of you for being here and for listening. I know I can count on you all when no one else is "getting it".

This is nothing serious, but I am curious about a few things that have happened to me since POTS started. Please take a moment to share your experiences... 1. Where is the strangest place you have had an episode? I have had tons of episodes in odd and embarrassing places, but the strangest is probably on a field trip to the zoo with my class. I fainted close to a emu exhibit and woke up with about 9 emus staring at me...thankfully, they couldn't reach me through the fence. I normally wake up to see human faces looking down at me...imagine how confusing it was to see those funny looking birds when I opened my eyes...lol 2. What is the weirdest suggestion you have received from someone who has been around when you faint? I passed out in K-Mart one time and when I came around, an old lady said "honey, you need to be drinking more milk so your bones can hold you up better"....what? I was speechless...that was one strange old lady. Sorry for the silly post, but I just wonder if any of you have ever had stuff like this happen.