WeimerMom

Heather, Are you saying that in addition to a bleeding nose that you have blood in your urine and are coughing up blood too? If this is the case, get to a doctor. This doesn't sound right. Not anything I've had and I've had a lot of symptoms. I can understand nose bleeds and spitting up blood if you've got a horrible sinus problem and your sinus' are bleeding down your throat, but having blood in your urine is another thing in itself. Anyone else agree?

Divine Spark Bless your heart. Thank you. I will start on these tomorrow from work. How did you find these? By web or phone book, etc. under what kind of heading? I'd like to keep this in my file of great information and be able to pass it on to anyone who might need it. Again thanks so much

Divine Spark Opps, didn't mean to slight you. With all my gabbing, forgot to reply. I live in a suburb of Columbus Ohio.

Nina, Thanks I'll take a look at the website and the yellow pages. I appreciate everyone's suggestions. I'll be keeping the phone busy on Monday....

Thank you all for your input. Don't know where to start. Briarrose: I know that my fatigue is more than thyroid, trying to convince a doctor is another thing. They see you for 15 minutes, if your lucky and with me, I'm talking a 100 miles an hour, just to get everything in and that's all she sees. I can look at almost all of my "problems" and link them to my POTS. I just wish I could make the doctors understand. As far as the beta blockers, not sure why they haven't tried anything but atenalol and that didn't work. They, Dr. Grubb included, has been focusing on antidepressants. I will ask about other meds. Merrill: I was on another site, I think. Sometimes I can't remember where I read things, might be on this site, but there was someone saying that POTS comes from some kind of neuro problem in the system and that all the problems, MS, NCS, etc comes from that. They were saying that treatment needs to start there. I guess that's what I was concerned about. I get aggreviated about the doctor treating all the little things instead of treating the POTS, but if the POTS is a "little thing" of something else, I need to treat the "big" problem. I was really concerned if this is the case or just someone's opinion. You know we all have them! As far as catching POTS, I don't remember anything but stress that triggers it. I can remember way back, a couple of times I had symptoms that are real close to what I have now, but not as severe. I believe that I was born with POTS. I had seizures at an early age but the meds were too strong, so my mother took me off them and made me "stay quiet". It wasn't until I became an adult and got into stressful situations that the symptoms started coming back. It really blew the roof, when I was trying to deal with a really stressful situation at work, and then I added two ailing parents and then they both died within 11 months of each other. I had about 3 years of constant stress. That ended about mid 2001, but I'm still trying to recover. As far as doctors, I wish there were an easier way to find one. I know one person who has POTS but her sympotms are totally different than me. She loses weight to the point of danger, I'm just the opposite. I'm so big it's painful...She doesn't pass out, etc. Anyway, ask about her doctor, she couldn't recommend them. Didn't say why. So here we go again. If the insurance company can't tell you, what do you do, get the phone book and call each and every one in it.....That's how I lost money before. (OSU and the holistic guy).... Sue, What kind of doctor is an Electrophysiologist. I'm willing to look for one too, if it will help. I looked in the phone book and didn't see any. Is Vaso depressor syncope the same as NCS. Both are syncope, so I guess it's close. Maybe I need one of these instead of a cardiologist. Maybe this is what that other person was talking about when he said it all stems from something else. Don't know..... As fas as my Primary Care doctor, I don't know if she'll ever get good at POTS, but she's more informed than any other doctor I've run into, but that doesn't say much either. It's just frustrating.... I want to thank everyone for letting me vent....and for clearing up several things. Does anyone know of a good doctor, of any kind, in Columbus Ohio? Everyone get out and at least get 10 minutes of sunshine on this wonderful day....Blessing to all!

I have a problem and this seems the best place so far to get answers. I was diagnosed with POTS by Dr. Grub several years ago. Just a list of some of the problems with my doctors as back up information. 1. primary care physican, too busy to learn about POTS and tries putting out little fires instead of looking at the big picture. Thinks that if I lose weight, suggested stomas surgery, that I'd be ok. Uped my synthroid to combat the fatigue....after over 2 years of complaining about it. 2. Cardiologist. after atenalol caused heart paid, said I'd just have to live with the symptoms. Didn't know how to treat me. 3. Endocrinologist. Got me a referral to my origial cardiologist and then to Dr. Grubb. but won't treat me till I get my "heart" straighten out.... 4. Holistic doctor. lets not go there, Cost me $400.00 out of pocket to find out that I didn't do well on formulated synthroid med and the doctor was a very busy person who didn't want to be disturbed to talk about it. wanted me to wait until next visit. 5. OSU neuro something or other. Was supposedidly a specialist on dysautonomia. Told me that all my other symptoms were not connected only my syncope was related. I should continue to take ProAmatine and just get up slowly. All my other stuff is probably related to something else. That one cost me $350.00 out of pocket. So you see I really don't have a doctor to turn to. I want to get my disability started at work, but they want a doctor to say that I can't work. I called Dr. Grubbs office and they won't do it because I don't see him often enough. He's so busy, I'm lucky to get one visit a year. I appreciate him, I do, however, I also know that he's so busy and he can't help it. My problem is getting a doctor here that will help. How do you go about it.. I've called the insurance company, they don't list doctors by what they treat. I tried calling the neuro guys at OSU, lotta good that did. What kind of doctor is the best to start with? What kind of doctor pulls the most weight with the disability boards? I honestly think I'd get better, if I could get out of the stress of work, but I need an income and insurance. Does a shrink help? They might be able to prescribe meds, but so far all antidepresants have had too many side effects. I'm so frustrated....I did see something out there on one of the web sites that all POTS stems from something else. Ok, why didn't Dr. Grubb say this and refer me for more tests? Please, is there something more or not. If so, where do I go to get tested and for what..... I also saw that some people refer to "catching" POTS. I thought it was hereditary and just gets flared up by stressful happenings......I'm so confused.....

Jackie, Thank you for asking for this information. Since I am new to this site, it will also help me. The one other thing I would like to ask for is some imformation on the abbreviations. Like NCS. What is that? I searched for several hours last night trying to find it. I was looking for three words that would fit. Is it Neurocardiogentic Syncope? (only two words, but was as close as I could get) Anyway, here are my stats.. 1. Scheryl 2. 47 3. POTS 1999, Vaso Depressor Sycope, 1998, (Hypothroid, polycystic overies, years ago. Believe these were from POTS even back then. Was also treated for adrenal disease back in the late 70's/80's with years of Prednisone/Prednisalone...) 4. 41, 42, 5. Suburb of Columbus, Ohio 6. Severe thurst, FATIGUE, sleep disorder, dizzyness, severe tremors almost like a seizure(teeth chatter, hand and arms shake uncontrolably, slurred speech) Eye muscles cross and can't straighten them up, half of my vision going grey. (very scary when driving). Also, lots of "floaters". Legs going to jelly. Horrible memory loss, thought I had altzheimers. Heart beating up in throat, terrible sweating when trying to do anything. Sinus problems. Legs from knees down always hot. legs felt like weighed 500 lbs a piece and were made of wood. Left arm pain and airpit pain. passing out or near passing out. Family, friends and co-workers always knew when I was having a spell, turned white, acted in a daze with slurred speech and memory loss. Depression from all of it... Intestinal upset, for one extreme to the other. Shortness of breath, muscle cramps. weight gain...inability to concentrate and learn new things. Probably more, but getting depressing listing it all 7. FATIGUE, dizzyness, sleep disorder, weight gain, legs still going to jelly, still memory loss, but not as bad, exercise intolerance, still some syncope symptoms and always intestinal problems. shortness of breath, hot legs and sinus problems. Everything seems to be cyclical thougth. One set of symptoms calm down and another pops up.... 8. Nothing but ProAmatine has worked and can't use it now because I gained 84 lbs taking Celexa and Welburtin together. I kept telling the doctors that I was gaining the weight. The premise was that Wellburtin was the new weight loss drug, so they kept uping the dose, but it acted just the opposite for me. At that time I didn't know how to get myself off a medication and just kept taking it, because I'd heard you can't just stop antidepressants. I'm now at 341 lbs. and miserable. I need to get this weight off. Anyway, I tried Zoloft, swelled me up like a balloon, couldn't even put my feet on the floor for fear the skin would split. Effexor, so dizzy I had to lay in bed and hold my head still. Lexapro, had diarea for two months straight and that was on 1/2 to 1 tablet a day. Can't remember the other ones but nothing has worked yet. 9. High salt diet and take it slow and easy. Miss a lot of work and my house is a total mess. Won't let anyone through the door, too embarrassed for them to see it. Still looking for something that will help. Heard that low carb is the way to go, but haven't done it since the 80's. I know that low calorie puts weight on me. Guess I'm carb sensitive as they say now.... So I'm going to try the Atkins diet again. Just need to get the energy to do something other than sleep. Takes energy to shop, put away and then chop and prepare "diet" food. I haven't had any bad reaction to food like I've read about some of you... I guess I should be thankful. Anyway, they uped my synthroid meds the other day, maybe that will help cause I can't take anything else...Oh, forgot something. I did find some relief from the intestinal upset. I started taking fiber pills, (Sam's club brand is cheaper than FibreCon and works just as well) They acutally cut down on the diarea when I was taking the Lexapro. So, they actually help in both ways. Not used to doing this, want to check and recheck my listing, but have to stop, so here goes......

Just got done reading all the comments and am glad, sort of, that someone else had armpit pain. Thought I was strange. I hadn't come across anyone else who'd had that symptom. My problem now, since reading all of the comments, is that I've been using the same product for years now and my pain comes and goes. I haven't found anything that sets it off. At least haven't noticed any. Any clues? Also, does anyone have arm pain. I can have a horrible aching pain start in my wist or elbow and radiates up the arm. It's not a throbbing pain. I don't feel the blood rushing or anything. It's like a horrible tooth ach type pain. I can't lift the arm or use the hand. It lasts for several minutes and then goes away. My heart doesn't hurt, my jaw, nothing like a heart attack. I feel fine except for the awful pain in my arm. Does anyone else have this problem or know what causes it.....Thougth since it was kinda in the same area as the armpit, that I'd ask..... Thanks

Jackie, I'm new to this site and have been reading about your ordeal. I too have had "bad" doctors, and I understand about forgiveness, however, that doesn't give him the right to treat you like a doormat and you should not just drop it. You will feel much better if you say something. You don't have to be rude, etc. Just send him an email or fax (fax is better, everyone in the office see's it, unlike an email) explaining that you have decided to change your care to another doctor who will actually listen to you and do a little research on your condition, unlike him. You can say that you forgive him for his shortgivings and hope that God will Bless him with some extra knowledge and understanding so he can help the next person like you. You don't have to hate him, just make a solid statement that he is not the doctor for you and why.....You will feel much better about yourself. You said that you used to be independent etc. Don't lose that. Doctors are not Gods, they do make mistakes and don't get along with everybody. You don't know what this guy is going through. Maybe God is trying to get him to wake up and you are the vessel that He is using. We could discuss it to death if we wanted, but the bottom line is YOU......Stand up for YOU....Tell this guy that you won't stand for this mistreatment/untreatment anymore. You have to become proactive in your health care, cause no one else is going to.......If you don't expect and demand the best for you, who will?....I've been to many, many doctors and undergone many, many tests just like most POTS people and actually got to the point when I thought I was nuts..... Believe me, I know. If you don't become proactive and take the reins, they will pass you pills and let you sit in some corner, wasting away. You used to be more independent you said, before you met your husband. He was attracted to that and probably expects that from you. You have let yourself lose a little of that, by depending on health care professionals to give you answers instead of getting them yourself. Again, been there, done that.....Partly because we believe that doctors are wonderful and we can't do the same thing as them. We think they are all pure, true and wonderful, not so.....as you have found out. Please believe me that I've been there and probably will again, but also believe that I expect the best I can get. When I go to the grocery store, I expect the best milk, meat, produce etc. for my money, and now I do the same for my health care. If I don't like how a doctor is treating me, I speak up. If they don't like it, oh well, I can get another doctor, cause most of them are not experts on POTS and will be learning the same as me. Might as well train a new one as you go along........right!!!! Hang in there, forgivness is great, but you can also help yourself and someone else by saying something to the jerk doctor.....Better go, didn't realize it was past my bed time, gotta get that extra sleep. Please take care.....

Ok, my first time here. Didn't know this existed. I have looked at NDRF.org but stopped reading cause it made me more and more depressed. I find this web, so far, a little funnier. Ok, I know thats stupid, but some days I need a laugh. Anyway, wanted to give you my take on sleep studies. I took one probably 2 years ago, and I couldn't get to sleep. They let me go at 2:00 am but didn't tell me what I looked like. I just wanted out of there. I stopped to get a drink at the White Castle and I bet I scared that poor person to death. I got home and looked in the mirror. I had glue all over my face and in my hair. It looked like I'd been on a real big drunk and had gotten sick and not cleaned my self up. I had to laugh....Oh boy, what a sight.... They tried the study again. I was drowsy for about 15 minutes, (with the help of ambien) could still hear everything going on around me, the guy in the next room snoring up a storm, the stack of glasses that got knocked over outside of my door, the tubes going through the hospital system, all of it. One of my electrodes started to come loose, the tech came in and touched me. It was all over by the complaining......Another one bit the dust. They ordered me a Cpap machine. That thing was torture. It took too much effort to breath out. I felt like they were trying to blow me up like a baloon... I wouldn't have gotten to sleep even if I could have......They also said I had restless leg syndrom and tried to get me to take Levadopa/Cardadopa. I refused. It had more side effects than POTS. I am again having problems, and am scheduled with another sleep doctor on friday. I'm going to give him all the data and see if it will help or just waste time to take another study. I'm beginning to believe that my symptoms are cyclical. I wake up numerous times a night, hyper and grasping for air. This lasts for several months and then I'm back to sleeping 24/7. Anyone else out there do this?