Chrissy

I'm a kid stuck in a 20 year old body. I'm insecure, I say things that a kid or teenager would say that most adults wouldn't. Can't think of an example off the top of my head. I enjoy playing at the park, toys, goofing off, disney channel, and I harrass the dog. Those are some of the things I notice. I can control it for periods of time if I need to like going to a business event or when I need to act my age. But it usually slips out anyway.

My brother has come to the conclusion that I need to grow up and learn to rely on myself. I need to pursue my drivers' license, take courses, get friends to do stuff with, and who knows what else. In his opinion I'm not retarded I should be able to take care of myself. He says my parents won't live forever and that he is not gonna be my "guardian". No one asked him too, anyways. What he doesn't understand is I'm not safe behind the wheel, I absolutely can't handle florescents and they are everywhere, I didn't drop out of school because I wanted to, and I tried doing the party all night thing. I'm not normal, I know that and my parents know that, that doesn't mean I expect him to take care of me. He acts like I don't want to grow up or that I still depend on my parents to take care of me. I don't. We are like 3 adults living in one house. I keep my mom company when my dad's offshore. I do stuff with my dad that my mom doesn't like doing, we're friends. Yeah they've paid all my expenses until now (hopefully disability goes through), and drive me around town, and let me live at home. But I pull my weight as much as I can and if I had to I could live on my own. Besides it take a lot of maturity to deal with a condition like this. Anyone can drive a car, work a job, rent an apartment, have a family, and live free and easy. It takes alot of maturity to accept life relying on someone else to drive you around and pay your bills, be limited to what you can do and when, deal with the debilitating symptoms, and still not be a complaining thorn in everyone's side. But people don't see that part of your situation. All they care about is how you affect their lives. Sorry to unload this, I just never thought my brother would disown me when my parents pass, which should be a good 50 years away.

My mom has noticed the more I got sick, the more immature I became. I've also noticed this, but didn't know it was as bad as it is. We asked my doctor about it and he said it is caused by my mind regressing to a time before I was sick. The conclusion is that my maturity level is one of a 13 year old. I'm 20 and have no clue if I'm done regressing. Does anyone else have this?

I have been told I have severe pots from 2 specialists and boy do I feel it. I also have high blood pressure due to another condition. So my blood pressure is in the normal range or high depending on the day. It is not often I have majorly low blood pressure anymore. Most days I feel like I'm going to faint and go take my numbers and they are normal. I'm not taking high blood pressure meds, it doesn't get dangerously high. I'm just wondering what would happen if the high bp was fixed would my numbers drop off the chart?

I was tested for sleep apnea. The sleep doctor that analized the results said I didn't have it, but the dr. who ordered it said it was present but not enough to need treatment. I'm having a hard time find "good" drs. I can go to any doctor I want, or most. I've been to virginia to see Abdallah, that is where I was diagnosed with POTS. Now I go to the Mitral valve and dysautonomia clinic in Birmingham, AL. I want a local dr cause I can't afford to travel every 6 months.

I have severe chronic fatigue and have for sometime. Every doctor I have seen puts me on sleep aids at night, which I hate taking sleeping pills, plus it makes day time fatigue worse. Now they are saying I'm fatigued because I'm not busy enough and have to much free time. As If! I'm very busy and it is exhausting, so why would I want to get busier. And on my not so busy days I'm just as bad. I heard there is a special diet that helps relieve cfs, but can't find it anywhere. If you know of this diet or have other suggestions it would be appreciated. I also have serious pain through out my body. Nothing seemed to help so I learned to deal with it or ignore it. I recently was diagnosed with fibromyalgia and put on tramadol. When that didn't help, the dr uped my dose and told me to get a life. Why does everyone say that? Anyways I also heard there are certain foods to stay away from to help with pain, but my dr doesn't tell me what they are. Please help.

I find that when it rains my POTS symptoms get worse. The harder it rains the worse I feel. Anyone else have this?

I have hearing goes from one extreme to another. Sometimes I have ultra sensitive hearing, but most days I can't hear too well. I'll have the tv blasting and still have trouble hearing and I hate talking on the phone cause I only catch every other word. I find if I'm not looking at someone and focusing on hearing every word I don't hear them. If I'm doing something and someone tries to talk to me I miss half of what they are saying. I figured it was Pots since it goes from one extreme to another and I don't want to go to the dr just to be told everything is fine. I did that with my vision problems. Does anyone else have this problem?

I have facial/neck, chest, belly button hair, and what my mom calls man's leg hair. I also have excess weight gain. Among other symptoms that could fall under my other conditions. I've had a testosterone test done and heard nothing back so I assume it was normal. I've had at least two doctors question if I have polycystic ovary syndrome. One did an ultrasound which came back normal and the other put me on metformin without telling me why. I just went to the endo. who ran cushings tests and what was said to be every test his lab runs to explain the hormone stuff. They all came back normal. Could this be part of POTS and the miscommunication of the brain or are they missing something.

Last year I went to Disneyworld and by the second day I had to go to the first aid cause my ankles were swollen and hurt incredibly bad. They said I had sprained both of my ankles and to stay off them. I spent the rest of the trip in a wheelchair and when I came home I stayed on the couch with my ankles propped up and iced. They stayed sprained for a couple months, but I started to walk on them. I'm not sure the swelling ever went all the way down. My Pots doc said it was caused from the blood pooling in my low legs. I then started feeling like my ankles were going to snap with my next step. They flare up if I'm on my feet walking around too long. My new Pots doc told me to start walking 30 minutes a day, so I did. After the second day my ankles were showing signs of spraining. I kept walking cause that's what I was told to do then I'd come home and prop my feet up. Today (day 4) I barely got up the street and my ankles were killing me. Like an idiot I kept walking, I barely made it home my ankles couldn't support me. So I called my doc today and they said I need to keep walking and that my ankles need to be checked by an orthopedist. I explained what the other doctor said and they said that the pooling accounts for the swelling but not the pain. Does anyone else have this problem.

I have frequent urination and sometimes what seems like a bladder infection (having to go, but nothing will come out), but recently I have had no warning and just peed my pants. Not alot so its noticable, I'm sure no one would know unless I told them. But it is still frustrating and embarrassing. Is this pots or should I make an appt. with my urologist. Please advise. Thank you.

I am in the bathroom all day peeing. Sometime I will be on my way out and have to turn around and go back, its that frequent. The problem is I wipe so much I have become raw and it hurts bad. I have flushing toilets ringing in my ears and I go through a pack of toilet paper rather fast. I know its pots, but there has to be some relief somewhere. Thank you.

I had this problem too. I thought it was pots, but decided to go to a gastro to rule out anything else. I found out I have gastroparesis (stomach is paralized) and that my stomach could not digest the food so it came back up. One thing you can watch out for is if your food is digested when it comes up or if it is fully recognizable.

Whenever I get wet whether its sweat, a shower, or swimming my skin starts peeling in massive quanities. I'm not sure if this is POTS, Lyme, or something else. Please advise if you have this. Thank you Chrissy

Excuse my ignorance but what is bv?

I need to know if anyone else is having a very offensive odor coming from the vaginal area. I have had it for as long as I have known that I had Dysautonomia. I need to know if it is a possible symptom. I have not seen it on any of the symptoms list, for Lyme either. I have been to GYN, Urology and my Lyme doctor doesn't know. I am hoping someone can give me some suggestions. This is where I have gotten all my answers from in the past. I seem to be the only one that can smell it but it is very bad, like something died. I worry that it is my liver or something. I have no doubt there are probably other things wrong with me that have not been detected yet. I hope someone can lead me in the right direction. If no one on this forum has it than I know it is not from Dysautonomia. Thanks for your replies.

I agree that it is nice to have a group with both Lyme and POTS to compare notes. First I found out I had an autonomic dysfunction in March 2005 when I fainted and had my first tilt table test. After lots of research on my own with the help of the internet, I found this Forum and found out that I had Dysautonomia. I went to VA, from Louisiana, to see a Dysautonomia specialist and was diagnosed with POTS. We still didn't know the cause and eventually I ended up with gastroparesis. All along, I had a horrible "rash"/stretch marks spreading all over my body. Again, thanks to the help and support of this forum, I was directed to the Lyme Disease website and found out not only do I have Lyme Disease but two co-infections as well. The "rash" is a bartenella rash and my Lyme specialist has never seen such a severe case. It turned out that my parents also tested positive for Lyme and because of my medical problems from the time I was born, it has been established that I was born with Lyme, contracted while my mom was pregnant. So after 18 years of not knowing and no treatment, I am at a chronic state and my organs seem to be shutting down. I also now have a thyroid condition, which I did not have when all of this started. I am going to the Mitral Valve Prolapse Center in Birmingham in October. I am sure they will probably also find that I have that. Why not, I seem to have everything else. They also specialize in autonomic disorders. I will going through a battery of tests, AGAIN! I think this is never ending. I have met and chatted with many others who have had POTS much longer than I have and it seems to just be continuously progressive. I just don't know what else they will find as time goes on. My lyme doctor doesn't understand why the treatment is not making me any better. The rash is still spreading and the symptoms just seem to keep getting worse. Especially the Chronic Fatigue and nausea. My heart is up one day and down the next as far as rate and my blood pressure. I spend most of my life on the couch. It is really tough what we are all going through and no one seems to understand. Thanks goodness my parents do.

I am very happy to report that because of this forum and the caring people, we have now found the underlying cause to all my problems! It turns out that Finette from this forum recognized the description of the unexplained "stretch marks" that have been baffling everyone and referred us to a website that identified the problem. Thank you so much Finette! It turns out that my parents and me tested positive for Lyme Disease and Bartonella. As soon as we saw the pictures of the Bartonella Rash on the Lyme Disease website, there was no question that is what I had. We are now under the care of a Lyme specialist and it turns out that I was actually born with it and that this has been the underlying cause of my POTS which led to Gastroparesis. I am just worried that there will be more things discovered and diagnosed in the future. I always feel like I have a collapsed lung and have never had an X-Ray for that. I hope it is not anything serious! We are very fortunate, with the help of all the answers we received by being active on this forum, that it has only been just over a year since all my severe symptoms started and we have most of the answers now. If we would have just waited for a doctor to figure this all out, we would still be without a diagnosis. We basically took our test results and did our own searches over the internet which led to this forum and a diagnosis of POTS, after going to VA from LA to see a specialist. The same goes for the Lyme, we basically figured it out on our own, after the referrel from Finette to the website, and then seeked out a specialist to confirm it. I am so thankful for this forum!

Hi everyone, I have had POTS and some soon to be discovered other stuff for at least a year. I have handled it pretty well living my life and pausing when needed to take a breath, but now I'm stuggling. Just recently I started dating a really nice guy and his 15 month old son (package deal). He's very great about my condition and very loving. I've fallen in love with him in every sense of the word, but I'm finding it harder to get through my life. I don't know if its just bad timing and my condition finally wore me out or if we're over doing it, which we really don't do much of anything. My numbers have been out of wack and my meds no longer seem to work. I feel like my heart is pulling me in one direction and my body in the other. I'm tired of having to cancel on him or have him watch me struggling to feel normal...I've read that POTS puts a strain on relationships, but I never understood til now. I love him so much that I'm starting to doubt whether I should be holding me back (I hope this is just cause I'm tired), but I also don't want to lose the best thing to happen to me in my life. Help please!!!!!

Hi. After months of constant vomiting and chronic diahrea, I have just been diagnosed with Gastroparesis. I would have never even known about this if it weren't for this Forum! I am so thankful that I can come here for answers. 2005 has been the worst year of my life. I received my official POTS diagnosis in August 2005 but became very seriously symptomatic in Dec. 2004. I am also waiting for the results of Lyme Disease testing. Also thanks to this forum and the caring people that participate in it and answer questions and recognize symptoms. We will see a Lyme specialist on Jan 12th. I feel like my whole body is shutting down. They suspect something called polycystic ovary syndrome as well and I am going to have an ultrasound done tomorrow. I just can't imagine what else can go wrong. Every time I go to another doctor, they add another medication to my collection. My heart rate has been staying over 130 even though I take Topral every day at 10 am. I need to call and see if I can take it twice a day. I have a very hard time with solid foods. I worry that eventually I won't be able to eat it at all and will need a liquid diet. I have read on the Forum that some POTS patients are on feeding tubes. I am curious if this is because you could no longer tolerate solids as well. What will my future be like. I can't even imagine what I will be like this time next year. I do accept my condition and handle it very well but I just don't understand how I can just keep going downhill like this. I do have alot of faith and I trust that God has a plan for my life. I hope I can get some answers for those who can relate. I would really love to hear from those with LYME and Gastroparesis so I can find out how you deal with each day. I do believe the POTS caused the Gastroparesis. And if I find out I have Lyme, I believe I have had it for many, many years and it is probably what caused the POTS. I may never know the truth about how this all came about. Thank you for your continued support!

Hi. I can't remember the last time I did not feel nauseas and had vomitted on occasion. Now it is to the point that I am vomiting every day, even if I don't eat. I started drinking ensure a few weeks ago to get some nutrition and I couldn't even get that down yesterday. Just the thought of food and especially the smell send me to the bathroom. All my symptoms just keep getting more and more progressive. I don't know if there will ever be any relief. It is very hard to be sick every day of your life. And not know from day to day what you will have to deal with. I have been officially diagnosed with POTS but am being tested for other conditions due to unexplained symptoms. Believe it or not, even with the lack of food and vomiting, I still gain weight. They thought I had Cushings but because I am covered in dark purple stretch marks but they ruled that out. Plus I have a very offensive odor. I am going to see another Dr. on December 8th. I can't believe how many doctors I have been to since all this started last December! Any comments will sure help. Please let me know if you have a vomiting problem constantly! Thanks for all the support!

I've become extremely sensitive to florescent lighting. Sometimes I don't even realize I'm under florescents, until my symptoms flare up so bad I can't think or move. I started wearing sunglasses and hats, to block as much of the lights as possible, anytime I go to any type of business. It seems to help the eye pain and vision issues, but does absolutely nothing for the other symptoms. I understand how your eyes can be sensitive to the lights, but how do a certain type of light affect symptoms that have nothing to do with vision.

HI. I have had POTS for a year (confirmed) and had no idea that all the pain I get in my joints and bones was related to this illness. My ribs get extremely painful and my ankles sometimes feel like they will snap with my next step. I called and asked about it today and found out it is extremely common in POTS patients. Please share your experience with this kind of pain so I can compare to what happens to me. Thank you!

I don't know if anyone else has this problem, but I frequently have trouble breathing. I can exhale just fine but when I try to inhale I have trouble, like my lungs refuse to expand. I usually work it out after a few minutes, but one time I couldn't seem to get through it. Luckily(?) there was an emergency vehicle nearby and they measured the oxygen in my blood (99 out of 100) they couldn't hear anything wrong and said I was panicing. I know the normal tests always come out negative, but its had to believe you can experience trouble breathing and no one knows why. I know my body is just sending mixed signals or something, but its scary knowing no one can help you in that situation. It's hard to explain to someone who hasn't experienced it. I usually say its like a yawn that won't come out and your body keeps trying til it gets it out. Cause I'm pretty sure everyone has experienced that. Anyway any suggestions are appreciated. Chrissy

Much to my surprise I didn't have any major problems with my disney trip, and I rode everything but tower of terror. I got winded on any and all inclines, but who doesn't. Mission Space bottomed out my #'s, but they regulated themselves pretty quickly. The walking around the park cause a spained ankle effect to both ankles( 75 % worse on the left) I had issues (light-headed, heart racing, chest pain, breathing problems, headache, etc.) through out the trip from the stress and excitement, but it was well worth it. Not sure how long I'll be paying for all the fun I had but the symptoms are gonna come and go, you might as well "deserve" it. Hopefully I'm well enough to do Exhibition Everest (debuting Spring '06) The car ride wasn't so bad going up there, but coming back my body had had enough and was not enjoying the 10 hour trip. Chrissy