Mrs. Glass

Good Luck on your move. Yes I have a question for you to ask. What do I need to do to be seen at Vandy? I am tired of waiting on these doctors to figure out what tests to be done next, and getting no where. Thanks Vanessa

Hi all,

I'm moving tomorrow and won't have access to the internet for a week or so, then I'm going to Vandy. I may not be able to post for a few weeks starting tomorrow. I just wanted to say hi, and bye for now.

Happy Holidays to everyone, and I hope the New Year brings more mountains than valleys!

Love,

Lauren

PS: Does anyone have any questions they want me to ask at Vandy? Let me know asap.

I was just wondering what I have to do to be seen at the Autonomic Clinic at Vanderbilt University. I am so tired of doctors that dont know what they are doing. I am having so many anxiety attacks every day, because of these doctors. It seems that no one knows what they are doing. I am so tired of everything that I just cant cope with it anymore. I went to see my pcp again last week, and I have another bladder infection. I just got over one, and here it is again. Before I got sick I never had them. I also told her that the Senocot was not working, and she told me that I needed to get more exercise. I WISH I COULD! I just wanted to scream at her. But I waited until my daughter picked me up and just started crying. I dont know how much more of this junk that I am going to be able to handle. I just want a doctor that knows what they are doing. If anyone knows how to be seen there, please please let me know. I cant take much more from these doctors. Vanessa

I had them a while back, and my PCP told me that it was bells palsy caused my a viral infection. She put me on some meds and it has let up. She told me that it could take up to a year to go away. Dont know if its the same thing but I would talk to my doc about it. Vanessa

Every once in a while, I get sharp, shooting pains in the left side of my head. They only last for a quick second, but they are scary. I don't get them very often, but when I do, it seems like they come and go all day. I've had an MRI that came back clear. You know, I'm so sick of symptoms that could be a stroke or heart attack. I can't be running to the ER every couple of weeks.

Anyone else have anything like this?

I have a neuro appt. on the 21st. I will mention this to him.

Good Morining Jacquie, I too get these funny feelings in my head that I cant describe. It seems like everytime that I move my head my brain is sloshing, sometimes all I have to do is move my eyes. I have tried to explain it to my neurologist, but I dont know if he understands what I mean. It always happens when I feel my worst. Dont know what it is though. wish I could help. Vanessa

Lately I have been getting a funny feeling in my head. It's hard to explain, it's not vertigo and or dizziness...atleast the type I am used to getting. It's kind of like feeling lightheaded, but sometimes, not all the time, when I get it I have pressure near my eyes. Sometimmes the pressure is near the right side of my head and other times it isn't. I'm really confused about what it is or even how to describe it. I have had a brain MRI so I know it's nothing serious, but I'm just curious if it is POTS related. Thanks

Would love to have some licorice, but as I am on Coumadin, that is out of my diet also. Vanessa

if only i could handle caffiene

Go get yourself some licorice and see if that helps.

Morning Nina, No my Cardiologist is not an autonomic specialist. My PCP sent me to him for bradycardia, he is the best in this area, but I can tell by talking to him he doesnt know much about autonomic dysfunctions. All he is concerned about is my heart. He told me that maybe getting off all stimulants will help my heart. I have a problem with my heart that the way he explained to me is it has an extra beat and with that beat it will pump blood into my heart, but not out and the next beat pumps blood in and out, but my heart gets too much blood in it and that is what is causing the chest pain.He said that maybe that will take away some of the other symptoms. I can understand him not wanting to tweak with my meds until my back heals because the last time that he did, my b/p went up too high, and I had a stroke, and ever since then I have been having problems with my memory,(even worse than before), my incontinence is worse, and now I dribble when I talk or try to drink anything. It is horrible. Half the time I cant remember how to work my computer, and I used to be excellent at it. I am just so frustrated with doctors. I havent heard back from my Neurologist yet. I dont know what he is going to do next. But I guess that I will just wait until he calls me back. I see my psychologist today, I hope that she can make me feel better. Vanessa

Personally, I can't survive without my morning cup of coffee. It kicks in before my meds...and was suggested by my cardiologist to remain in my routine (dr. grubb). Is your cardiologist an autonomic specialist? Perhaps the caffeine was really helping you more than he realized?

Nina

Good Morning Ernie, He wont up my meds until I am off of all of the pain meds. The last time he started adjusting them I had a stroke, because my b/p went up too high. Vanessa

Hi,

If the Proamatine is helping you you could check with your doc to take it more often because it is active for 4 hours only.

P.S.: When I faint, it does not take away the crappy feeling. I feel worst after fainting than before. I too wish the fainting feeling would go away when I faint but in my case this is not the way it goes.

He wont give me anything to help me. I was on wellbutrin, and he took me off of it. He just told me that I had to do it by myself. I have tried the patches before,and I am alergic to adhesives and the patch gave me a nasty looking rash. Vanessa

Sorry to hear that are feeling so bad.

As for the smoking, you may have more luck with giving up the smoke part first, then tapering off the nicotine. Ask your doctor about using a nicotine patch or gum. Nicotine is bad for you, but nicotine plus all of the crud that is in the smoke (including carbon monoxide!) is far worse. Maybe you will feel a little better if your lungs heal a bit.

I think that POTS makes it harder to give up smoking, because the nicotine constricts the blood vessels. Perhaps the doctor could increase your midodrine dosage as you decrease your nicotine dosage.

I saw my Cardiologist this week, and he took me off of caffeine, and all stimulants. Since they had taken me off of all of my meds I have been using caffeine to raise my b/p. I am now on midodrine once a day and extra salt in my diet, but my b/p is bottoming out just sitting here. I can barely see my b/p is so low. I wish that I could pass out just to get it over with. He said that he did not want to tweak with my meds until my back totally healed and I was off all of the pain meds. But he also wanted me off of all stimulants. I can barely sit up right now. Oh my lord how am I going to get through the day like this! I dont see him again until March. I am so scared that every day is going to be like this. I only drank 2 cups of coffee in the morning, and had my comfort food ( chocolate) occasionally, but now I have no caffeine in my body and I am crashing. I have been trying to quit smoking ever since I got sick (after 27 yrs of habit) and nothing so far. But he told me that I had to just do it. That I could not take anything to help me to quit. He gave me one month. He said to cut down and then to put them down. I know smoking is a horrible habit, and I have hated it for years, but I have never had the willpower to stop so now I know that I have to. I have told my self that by January 1st that I will be smoke free. I am actually looking forward to that. The thing is that when I am in the hospital I dont even crave any, but as soon as I get out I just go ahead and pick one up. I know that I can do it. I just have to keep telling myself that. I am just really scared today. I was supposed to go Christmas shopping with my daughter today, after my doctors appointment,and I dont know if Im going to be able to stand long enough to even walk into the store. It is taking forever just to type this in my eyes keep losing focus so I have to stop for a little bit. I am not breathing so good either. It seems like I have to make every breath come. Now I am crying again, so I guess that I will go for now. Just needed to vent. Some days I am so scared that I just want to scream. Mrs. Glass

Hi Dayne, I know how you feel. It is getting to me too. Sometimes I wish that I could just sleep all day just to pass the day away. But I cant sleep very much at all. I wish that I had some great words of wisdom for you. I read all of the other posts sent to you, and they are great. I could not add anything else. They are a great bunch of people here. I agree that you need to find a therapist that specializes in chronic illnesses. My therapist is good, but she specializes in family problems. But in my area there are only 2 therapists in my insurance network, and she is one of them. Hang in there. Mrs. Glass

I knew there was going to be pain and suffering in everyone's life but I never knew it was going to be on a daily basis. I heard your never given more than you can handle. Well I must have been confused with someone else because this is more than I can handle....more than my family can handle.

I'm not depressed today or sad I just don't know how I can wake up another day and feel so physically horrible and watch the disappointment in my families eyes.

When I was first sick I would get a week of feeling good and a 2 bad ... now it's constant for 2-1/2 months. It starts to wear you out. Do you guys feel sick everyday?

Sorry for the pity party but this just feels like a horrible nightmare and i'm not waking up!

Well for my kids I have to keep fighting but this is the hardest challenge I've ever faced.

I don't think it's normal to be sick everyday. I personally don't physically know ANYONE who is sick all the time. Trust me I know alot of people and families and only 1 person had a chronic illness and she's only sick few times a year. So I find this hard to accept. Are you guys in this alone too?

Thanks for letting me vent..again!

Dayna

I was just now able to read all of the responses on my post yesterday. Thank you all for all of the uplifting words. It has been a hard few weeks for me lately, and I guess it just all caught up with me. I saw my Cardiologist yesterday, and I can tell that he doesnt know anything about what is going on with me. He told me that I had to get rid of all of the stimulants in my life, like coffee, and chocolate. Oh glory, my only rewards lately have been 2 cups of coffee in the morning and my comfort food, (chocolate). But I guess that I will do what he said. He is the doc. He does not want to tweak with my meds until my back is tatally healed, and I am off of all of the meds for that. Right now he has me on one Midodrine a day,and extra salt in my diet. The most that he is concerned about is my premature heartbeat. He explained to me (finally) that with this heartbeat that it pumps blood into my heart, but not out. That the next heartbeat pumps more blood in and then pumps it out. And that is why I get such horrible chest pains. He is hoping that getting rid of the stimulants will work. If not he will have to put me on beta blockers, which lower the blood pressure, and he is trying to keep from doing that. I asked him about my other symptoms, and he did not have a clue. He said that it may take care of them or it may not. So I am still no closer. Frustrating! I dont have any close friends anymore. I used to, but no one calls or comes by anymore. I used to call them, but I dont want to bother them anymore. I try not to unload on my family, they are going through enough with trying to deal with all of this. I dont need to add to their problems. So I come to the only place that I can go where I know that I will get understanding, and not be judged, because I cant do what I used to do. I appreciate all of you, you have made one very lonely woman, a little less lonely. I know it is not the same as human contact, but when it is all a person has, you tend to appreciate it. I am sending all of you great big HUGGGS of gratitude. Mrs. Glass

Good Morning, Yes I do like him, he seems very intersted in what is happening to me, and trying to get to the root of the problem. He even came in on a saturday because he could not keep my schedules appointment on Wed. I had the EMG and it was a little painful, but it ruled out MS and Parkinsons. But it did show that I was having problems with one main nerve in my leg. My MRI showed 4 white spots on my brain but no where near to the spot where your autonomic system is. He doesnt know if the spots are from the stroke or something else. He is going to order more tests, but he wants to get all of the blood test results from my PCP to see what tests that have been done on me. So far I do like him better than any other doctor that I have seen. Thanks Mrs Glass. aka Vanessa

I do so hope you like this neurologist. My husband did when he was his patient. And we know there are slim pickins there. Miriam

I dont know why but when I woke up this morning I started crying and it seems as soon as I stop I start up again. I am so frustrated with everything. Here it is the Holidays, and I cant do the things that I used to do, and I just want to scream. I have to go to my Cardiologist today and I know that I am going to cry again. I hate to cry in public. I dont like anyone to see my weakness. The anxiety is so bad this morning that I am shaking all over. Maybe I will have a huge potsy storm in his office and he will see just what I am going through. I know that I am probably on a pitty party right now but I just had to let some steam off before I crack up completely. I just dont know what to do anymore. I cant concentrate on anything, and I cant do anything but just sit at this stupid computer or lay on the couch. My family will not let me stay in bed. THey say that I dont need to be isolated. That I need to be around the family. I want to be alone, and I know that it is probably the depression, but I cant help it. I dont like to cry in front of anyone. Not even family. It just hurts them more. I had to reschedule my appointment with my Pshychologist because I didnt have enough money for all of the copays this week. And I really need her right now. Well I was hoping if I put my feelings down that it would make me to start feeling better, but it didnt work. Thanks for letting me vent to you guys today. Sorry that I have been so negative. Maybe I will feel better later. Mrs. Glass

Good Morning Sunshine, I have the oposite problem, I dont get diahrea (sp) I stay constipated severely. I am on senocot which helps when it wants to. Also my husband works 2 jobs to pay the medical bills, and I have applied for SSI. It is frustrating so I hired a disability group that specializes in SSI. All I have to do is fill out the paperwork that they send me and they do the rest of the work. I could not do this by myself, and I know it. So far they have got it overturned where the SSI dept said that I had not worked enough in my life for SSI. I just recently recieved paperwork from the SSI dept to fill out, so I know that it is still a go. I would talk to my doc about the diarrhea problem. Hopefully there is something that he can give you to help you out. Also WELCOME to our little support group, its a great place to be when you are in a position as all of us are. Mrs Glass

Hello There..... I' very new to this POTS thing..... I just got dx with it this past month. I have had some of the symptoms for awhile, but the harder to deal with ones ....like severe diarrhea, very low bp, dizziness, anxiety, fatique, vomitting...etc....those have become more prodominate the past 2-3 years and it has taken them....(doctors all over the southeast US) to finally figure a dx....and now a lot fo the symptoms that I had kind of ignored before, now all make since. For instance,I also have diabetes type 1 and have an allergic reaction to the insulin... severe swelling all over from face to toe...so I would simply write those symptoms off to that instead..... like the purple legs and hand and feet...and swelling for instance.....now it all makes sense....

Anyway, my biggest concern I guess is the diarrhea .... and financial..... does anybody have any suggestions for what to do for a liviing..... and/or what has worked for you about the severe diarrhea.

Mine is really bad and had been life changing. I was an extremely active fit chic....but now I have to wear diapers, have accidents....etc.....lost my job...was a very sucessful legal assistant...worked and protected problem kids..... but high stress also caused me to have to quit..... anyway....they have had me on everything from Euthormyacin to lotronex to sandostatin...... nothng, so far, seems to work.... I have been tested for everything from cancer to celiac to chrohns .....any suggestions.... this really is hard...... I have been reading some of your posts, though,...and it has helped....I have been dealing with this alone for 2-3 years now....slowly losing every aspect of my life..... it has been nice reading your posts....

Does anyone have any suggestions about the diarrhea ...... and what do you guys do for a living? thanks for any help...sorry sooooo long..... not feeling well ....and not being very articulate....thanks for understanding...Sunshine....

Havent found anything yet! Be glad when they do! Mrs Glass

I'm not looking for indepth discussion, just a possible list of treatments that could alleviate my tachy and brady episodes and erratic bp....anyone out there found a treatment that has really helped their POTS to the point where they can go back to living like they did before their POTS got real bad?

Thanks in advance guys, you're all awesome

P x x

Good Morining India, Yes I am starting to hate those good days. My mind tells me that what ever was wrong with me is gone, and I try to start leading a normal life, then wham it hits me again. I get so tired of it that I just want to scream. My daughter tells me to be glad that I have the good days, and it is not a continual thing, but I always seem to do the same thing. I think that it is over. I guess we are not alone in these stupid symptoms. Mrs Glass

I don't have POTS symptoms continuously. They wax and wane, ebb and flow over the course of hours, days or months. But when I am about to get a really bad attack--an autonomic storm I think others call it--I get certain "pre-symptoms" or warning signs. Usually it consists of me feeling physically quite good--no dizziness, palpitations etc. But mentally I feel very subdued. I get very quiet and reluctant to interract with others. A queer kind of stillness comes over me. It's almost like the calm before the storm, to use a cliche. Then about two hours later I will suddenly become very dizzy, often to the point of near syncope, my systolic or diastolic pressure will drop, I'll get tachy etc etc. That's just what happened to me this afternoon. I was sitting in a meeting and I felt very subdued, didn't contribute with anything like my usual enthusiasm (or rather outrage given what is going on at work!). I felt totally disconnected and indifferent. Then, once I got home, I started having the usual symptoms. The screen is circulating before my eyes as I type!

Does anyone else experience this and/or can anyone explain this? As I get warning symptoms, I wish there was some way I could circumvent the coming collapse.

India

Good Morning Diana, yes since I got sick I can not sit up straight any more. If I do I get the wierdest feeling all over. My Orthopedist told me that I had to practice sitting up straight because of the osteoporosis, but I told him that when I did I felt like I was going to pass out. He told me that I will end up with a hump. I know that but what is a person to do? Cant win for losing huh! Just another wierd symptom I guess. Mrs Glass

Hi everyone,

Does anyone else have difficulty sitting up straight (as in a stool, for example)? My symptoms are terrible unless I can sit back and relax my abdominal muscles. Does this happen to anyone else?

I also have discomfort around my diaphragm area, much like there is a water balloon in there. It goes away when I lie down.

I also have difficulty breathing that gets much worse when I sit up for a while.

What do you guys think?

Thanks!

Diana

I had a wierd TTT also, the doc said that it was inconclusive. My b/p was low and even lower, but I had absolutly no symptoms what so ever. Wish I knew also. Maybe I was having a good day, I dont know. It seems like everytime that we think ok this test will tell us exactly what is wrong, it comes back negative or inconclusive. I too am very confused. Which confusion is normal for me these days. Hope you and your docs figure it out. I think the worse thing is not knowing, and what is even worse is when they give you partial diagnosis, or the maybes. Or you think that they have said one thing and they say that they didnt say that so now my daughter always goes back in the exam room with me. So I wont have to depend on just me hearing what they are saying. Hope they find out what is wrong with you soon, it is so frustrating I know, I have only been going through this for just over a year,and some days I think that it is going to drive me crazy. All I can say is just to try and hang in there, hopefully your answers will come soon. Im sending you one great big (((HUG))) to help cheer you up. Mrs. Glass

Okay so I had the TTT today and during the test it didn't seem like my bp was too bad or even fluctuated(watched the monitor, ) that much but I felt the dizziness,sweats, etc. My heart rate was high at some points, but I am so confused. I don't think it was a posittive test but why did I experience the symptoms. My bp today wasn't bad at all, but the other day I went to the doctor and it was very low, so what's the deal?? I really just want to know what's wrong with me

Thanks, Jacquie

*I did have a very handsome guy do the test

Sometimes is doesnt matter if Im lying down standing up or walking my b/p will crash. While I was in the hospital, It used to go so low it would freak the nurses out. Until my doc told them about my other medical problems, and I was on an IV the whole time. It just seems like my body is going to do what it wants no matter what. Hope you find some answers. If you do let me know, OK. Mrs Glass

Any of you get BP crashes when lying down? Also, when I get IV's, I sometimes get really tachy and feel funny. Is this normal.

bamagirl

Oh yes I get chills all of the time. I dont know what its from. My thyroid is ok, I just figure its something else for me to have to deal with so I havent even mentioned it to my PCP. My temp also has been running low. which before I got sick it was normal when it was supposed to. My problem is I dont even seem to run a fever when I do have an infection anymore. and for me that is wierd. Because before if I had just the slightest of an infection my temp would soar. I dont know if it is just a potsy thing or not. Probably wouldnt hurt to talk to your doc. Mrs. Glass

Any of you get the chills often? For the past month I have had the chills every day. I take my temp and it is 97.0-98.0 so I know I don't have a fever. I think it is really strange that this has been going on for so ling and so often. I feel so alone!!

bamagirl

I have problems understanding anyone if there is any other noise in the room. Everything just gets garbled up. Also my hearing is very sensitive now. I can not handle loud noises or even music, it causes a lot of problems for me. Sudden sounds just freak me out now such as the phone ringing or the doorbell. Mrs. Glass

hi,

just wondering if anyone has had hearing loss or problems, it seems my hearing is somewhat differant, i mean i had it tested when i first got sick but it seems like i have to really really listen to what people say or i can't hear it all. the tv is a big issue i have to turn it up to hear and it drives me crazy....

susie

I didnt get measured for them. I ordered mine through the Wal-Mart pharmacy for 25.00. I am on my third size now so the cheap price is great for me. Mrs. Glass

Hello. I am wondering if there is a difference between the jobst hose you go and get measured for and buying them off the internet. Measured they were 120.00, on the internet it looks like 70.00s. My dr specifically said measured, but if it is the same thing.... My hose just say med on the label, so wouldn't it be the same? But, I think the box looked differently--which makes me wonder. Any ideas on the cheapist places to get them? Thanks, JenniferTX

No, I was on .6 mg a day. and had been for a couple of months, until I had the mini stroke. Mrs. Glass

Where you on the smallest dose?? Maybe if you are on a small dose they just stop it?? That's what they did with me, lol, but I hadnt even been on it that long. The headaches were just too much for me, too bad I still get them

Well I saw my Neurologist on Saturday and he did the EMG, and he said one of my nerves is not putting out what it is supposed to. He said that he doesnt know if it is a precurser to something just starting or what, he is going to run some more tests. He did rule out MS, and Parkinsons, so I guess that is good news, still no closer to anything else though. The MRI showed 4 white spots on my brain that he doesnt know if they are from the mini stroke or not, so still no answers yet. He is going to get all of the reports from all of the blood work that has been done on me and probably order more, so I am still no closer than before. I am just so frustrated right now that I could scream! It seems like all I do anymore is go to doctors, my whole life has been turned upside down and I have no control over anything anymore. I cant even clean my own house. It doesnt bother me so much that I cant work, even though I wish that I could, but it tears me up inside that I cant even stand long enough to even do a sink of dishes. I started my Midodrine yesterday and I myswell have been taking M&Ms it did not do any good at all. I see my Cardiologist yesterday and he will probably up the medication. I actually hope that I see his associate, he explains things better, and seems to spend more time with his patients. Although my patience has just about run out. Well I guess that is enough of griping from me, I am sorry for being so upset, its just this is the only place that I can go to vent anymore. None of my friends ever come over or call anymore, and I just seem all alone. Talk to all of you later, thanks for letting me vent. Mrs Glass

Thanks for all of the good replies. At least I know that I am not the only one that has had problems after. I am claustrophobic, but I figured out to close my eyes before I go in and to keep them shut and think of wide open spaces, and that helps. I do know that my heartrate does go up, and I do seem to breathe faster, but I have never felt the way that I did after these two. Thanks again for all of the info. Mrs. Glass

Welcome Shannon, you have come to the right place for support and information. There is a great bunch of people here with some mighty big shoulders. Yes it is good to have somewhere to go to for someone who understands what you are going through. Also you can order brochures from this website that will actually help your friends and family understand what you are going through. I ordered them and they have helped a lot. Sorry that you had to join our little group, but at least you are not alone anymore. Mrs. Glass

Hi! My name is Shannon, and I am new to the forum. It really is a great feeling to know that I am not alone....or crazy. I'm 20 years old, and I've been dealing with POTS for about 4 or 5 years (my symptoms are sort of difficult to trace back). Still, when someone asks me to explain what POTS is, I don't even know where to begin. That's why DINET and this forum are so wonderful. It is one of the very few places where I feel that I can say "POTS"...and there are no confused looks. I finally feel understood. Thanks so much for sharing your stories---they've been an inspiration. I plan on posting mine sometime soon.

Take care!

Shannon

*POTS, chronic migrains

*Mestinon, Topamax

I just read your post and my heart goes out to you. My family is very supportive, which is very helpful. They knew that something was terribly wrong with me, because I never got sick before, and I was always there to help anyone when they needed it. Now I can not even clean my own house. My problem is all of my friends are Christians, and they just cant understand why I cant go to church anymore. I have tried to explain to them that for one I can not sit there that long, and all of the lights, the loud music and noise, and the many different colognes just make me feel where I wish that I could just pass out and get over it. The one hardest thing for me to do was to apply for disability. Although my friends and family encouraged me to go ahead and apply, it just feels like to me that I have given up. I agree with one of the other posts, that you should print out your post and send it to your brother. It is so well written, and maybe he just doesnt understand exactly what you are going through. I hope for your sake that he comes around. Mrs. Glass

I just got done talking to my sister in law on the phone. Apparently my brother feels that if he can work in his condition---then I should be able to work. My brother does have health problems, but on the same hand he also does not take care of himself. I think his last scare might change that however. He was pretty sick with pancreatitis----that is some pretty ugly stuff. Anyway he came though it OK---but has to change his style of living and a very, very low fat diet. He also has a number of problems with his shoulder, and back---and unfortunately has a fairly physical demanding job.

However, he does not have anything close to the issues we suffer from on a daily basis. I can tell you right now I would get wiped out just getting ready for work. I have worked for a long time---about 25 years----some physically demanding----some in an office setting for the last 10 years. When a friend of mine came to town 2 years ago---I visited her everyday in the hospital for 2 hours twice a day---total of 4 hours. I crashed pretty bad by the end of the week----and that is what helped me to determine if I should file for SSDI---as this was somewhat like what a part time job would be.

I'm not a sedentary type of person-----even on bad days I will try to do something----anything. I get judged for that------if I can go help my parents out for a couple of hours with dinner, or some light housework then I must be OK to work............. I'm one that will push until I can't push anymore. I like to help other people because it makes me feel useful---plus it comes in handy for the person being helped.

Well I only do this if I am able........ A job does not allow us to decide when we are able-----you have to be there every day----on THEIR schedule----not ours----that's just not the way things work. If I help someone out-----they know I may need to leave or lay down.....and at times I could crash for weeks and be fairly house bound.

One gift I have is sometimes knowing what a person is thinking mainly from watching their body language----and careful listening. My brother doesn't understand any of this----and until he does, he shouldn't judge. There is a lot more to POTS then body aches----and it's no picnic. Just watching TV can be so over stimulating it could send some of us to the pits of the pots hole. We all know what a malfunctioning autonomic nervous system can do-------it controls all out involuntary body functions.

So if my brother would like to see what it's like to wake up out of a dead sleep with his heart race at 150 BPM, blood pressure of 70/50, then try to stand up only to get dizzy or pass out-----then deal with all the other fun stuff like digestive problems/or the digestive system just not working at all, bladder dysfunction, body aches---and profound fatigue-------then he may have a different opinion on what is disabling!

And that's not the half of it as many of us have POTS along with other illnesses----and crippling spine problems due to EDS----or as something separate alltogether. Then let's not forget the horrible migraines----I often forget that symptom because it's not a major problem for me----so I could only imagine what that must be like when added to the rest of the mix.

I hope the next time my brother sees me he will know the batttle that goes on inside my body everyday----on how much I struggle just to take care of my own home----and personal needs. WE are warriors to a degree---as we not only have to battle the daily struggles of dysautonomia and other coexisting diseases, but we also have to deal with the continuous ignorance in the medical society, and the judgement of family and other ignorant people.

I have met a lot of people with various degrees of dysautonomia----and most of them are not able to handle gainful employment. Some are blessed with understanding bosses and are able to continue working, but it takes every fiber of thier being to find the strength.

I am proud of my brother for how hard he works and how good he takes care of his family----but he has no idea on what I go through on a daily basis. I pray for him---and his health all the time. He has to have a colonoscopy----and endoscopy to look at some thickening on the wall of his colon. I pray he is OK----and would never want to see him suffer. I only wish him the best health possible----and his family as I love them dearly.

It's difficult to continue caring for people who judge you------but I still try as I don't want to be the same way.

It's a hard cold world out there-----and we are in no shape to fight it-------so I just try to look the other way, but it isn't easy.....................

Julie :0)