lindaf

Dear Katherine, So sorry you are having such a hard time again. Hope your meds kick in quickly and you are feeling good again. You are supportive of everyone on the site. Will keep you in my prayers. Linda

Do not give up! I do not have POTS, but do have tachacardia, and have had some episodes feeling like I was having a heart attack. It took three doctors before they finally realised it wasn't in my head. Also, for years I had severe migraines and none of the doctors I saw did much for me. If I woke up one day every few months without a severe headache, it was a rarity. I went from doctor to dentist to optomotrist, etc. My dentist's remark to me was "even hypocondriacs feel pain". I walked out of there crying and so upset. At the time I had four small little boys and each day was a nightmare. I finally found a doctor who took me seriously, and he turned my life around with trial and error. I also went to doctors for two years for horrible attacks of pain in my stomach. They all did upper GIS, but nothing else. Couldn't find anything wrong with me. I finally went to a gastorenerologist, and he diagnosed my problem as pancreatitis and gallbladder disease. I was very thin, and no other doctor saw what he did. After my gallbladder came out, I was a new person. I had bladder cancer five years ago. I went to my GP and told him I had blood in the urine. My urinalysis was clean. I called him back the next day and told him I had an episode of pure blood the night before. I had to insist that I wanted to go to a urologist. Ten days later I had bladder surgery. If I had not insisted on a referral, I would not be here today. It was a huge tumor and very aggressive. I am sorry for rattling, but I feel you should never give up and push until you find the right doctor. God Bless, Linda

Good luck. Once you find a doctor who understands POTS, you are halfway there. Keep the faith, and you will start finding some answers. Linda

So glad you found a doctor you can trust and has trained under the best! Congratulations and good luck!! Linda

Dear Jenn, so glad to hear you had such a good visit and helpful one with Dr. Grubb. Sounds like there is light at the end of the tunnel. Good luck with your new meds! Linda

Dear Katherine, I just love your pictures and know all appreciate seeing who you are corresponding with. I know you spend alot of time on this and I think you are great! Just wanted to let you know my niece is going to be induced about May lst, but now the baby is breach and that may change things. She is holding her own. A few weeks ago we had a baby shower for her at her house(just all of the family) and she did well. She sat in a lounge in the living room during the shower, and did get up several times for a minute. She is looking pretty good, but is still pretty much bedridden. She does get up to go to the bathroom and sometimes makes it to the table for dinner. We are all praying that things go well for her and after the baby is delivered, she can get started on something to help her live a more normal life. Thanks for your support. Linda

Ernie, Sure hope you get the answers tomorrow! Good luck and I'll say a prayer for you. Linda

To make a very hurtful story short. there are 5 children in my family. Dad died young 36 from Ca., Mom found drink. You get the picture mother never home, at bars, 5 kids to care for. She didn't do a good job. My middle brother was always her favorite. When we moved to pgh in 2001 it was to help our aging parents. Help she did need, and knowing the system I helped. There came a point when her demands were too much for me a 3 hr drive 5 days a week a bit much. So my brother decided that he would help her if she had no contact with me, and they moved her and her husband without any of us knowing. She ended up in the hospital and I was told dhe would die. I had the admin. ask if she wanted to see me, she said absolutely. I made arrangements to go during non visiting hours. I arrived and was told that I had to have a guard in the room. Thae admin came and stood outside the door. My brother had been ther right before I arrived. I left and the next thing I know I hear people sayig my name and asking me where I was. I was outside the hospital for three hours in march with no coat, someone saw me from a second floor office, laying near a dumpster, not by my car. I was unconsious 6 hours. I had bruised on my face shoulders and arms. I transfered to a pittsburgh hosp and was diagnosed with pots. This was my first dtime kidneys shut down. I have not been allowed to see my mother in 2 years. She died today. My sister called my mother in law to tell me that the service was thurs. I was not included in the funeral home time. I am so wounded. I know as a minister that I should forgive and understand. It seems that someone could have contacted me. My fear is try as I might that I'll obsess about this and end up in hospital again. I would like to attend I think. I am not sure how to deal with these people. Maybe I am a bad person, i'd like to think not. I have a therapist who is wonderful. Yet I feel that I am truly an orphan(not just from today,I have supported myself and had my own pt sinceI was 15) an orphan with an orphan disease. There needs to be a CAMP FOR US TOO Thanks to all for reading, and also sharing. Miriam <{POST_SNAPBACK}> Dear Miriam, I am so sorry to hear about the loss of your Mother. Your family needs counseling and you have a right to feel hurt. I AM SURE your Mother knew you loved her and knows what is happening now. Do what your heart tells you and ignore the rest. Do not do anything you cannot handle and that will make you sick. Just pray for guidance and you will make the right decision. Linda

Emily, You are so lucky to have found a doctor that completely understands and is willing to help anytime. Where do you live and who is the doctor? Thanks, Linda

Morgan, my prayers are with you, your husband, son and friend. You have more on your plate right now than most have in a lifetime. Keep your faith and all of your love will see you through this terrible time. Linda

My niece got pots after several months of fighting salmonella D and ended up with deep tissue dehydration. The doctors seem to think this is what caused pots, but she has said that she has had other episodes that maybe only lasted a few days as long as she can remember.

I AM WONDERING IF ANY OF YOU LIVE IN THE Buffalo, New York area and if so, who your doctors are? I read all of your postings everynight and my heart goes out to each and every one of you. I don't remember who posted today that was a new member, but was upset with the way her husband was handling her illness. Men have a hard time coping with illness. Usually when they are sarcastic, it is because they are just plain scared. They are not use to being the nurturing ones, and are use to you running the house, children, cooking, shopping, cleaning, etc. It is a known fact that a man can only do one thing at a time and they don't know how to juggle all of the above. Hang in there, because as they mature, they start to show much more compassion. Love to all, Linda

Stacey, I will remember your dad and family in my prayers tonight, as I will all of you. The more I read from all of you, I realize that Pots is such a lifetime illness that all of you are enduring. I know you have your good times, but so many bad times, too. My heart goes out to all of you. Much more research is needed on this subject and I would be willing to help get this started if I knew where to start. If anyone is already doing this, please let me know how I can help. Linda

Katherine, I am glad to hear that you feel that my niece is on the right track. Anything at all that will help her to start living a "normal life" is worth its weight in gold. My heart goes out to all of you with what you go through. Thanks. Linda

Hi Kristen, My niece was told that an epidural would lower her blood pressure even more and would not be safe. Did yours lower during the epidural? Kim is walking around the house a little more since she went on zoloft about ten days ago. It is the only drug they are willing to use while pregnant. It does something to the autonomic nervous system(spelling may be off), but I am not quite clear what it does. She also went to her daughter's play last weekend. This is the most she has been able to do since last September. Her husband dropped her off at the door and picked her up at the door. A friend has a chair waiting inside and she had to rest before she went into the auditorium. But she lasted through three hours of sitting and was only very tired. She was almost hyperactive before this illness started. She is being induced a month early if everything goes accordingly. I will suggest massage to her. Thank you for your information. Linda

Dear Stacey, Alot of people are uncomfortable with sickness and don't know how to react. As people mature and go through life's trials, they become much more sympathetic to others problems. Maturity has alot to do with it. Young people tend to be self absorbed and want to be happy. They don't know how to share sadness. It doesn't make it right! All of my children have cared deeply about their cousin. On Christmas Day, we all got together and it was a wonderful day. We all cried when not in the same room with my niece, seeing her in this condition, but to see the effort she put forth to be with the family, was worth every tear shed. Some parents seem to make their children feel they are the only ones in the world that count. My favorite line to mine growing up was No one is better than you and you are not better than anyone else. Care for all of your friends and loved ones as this may be the last time that you will see them. They are all compassionate and truly love their neighbor. It is not you, but them. Don't stop reaching out for help, love and friendship and talking. It will always be your salvation to get through life. Linda

sophia, i am so glad you are getting a lawyer. Most people get turned down at least once, but keep pushing. Pots is a relatively new field of medicine, and the system is ignorant about it. A good disability lawyer will be worth his weight in gold. Don't give up hope! linda

My niece is about 6months along, but the plan is to induce her a month early if everything goes as planned. She will be delivering naturally without medication. Her blood pressure is extremely low, so they are really going to have to keep an eye on her. Thank you for your input. linda

She is about 6 months along. I sure do appreciate all of you answering my questions and hope all of this information helps her. Thanks again. linda

Thanks for your input. She does use a shower char, because she couldn't stand long enough to shower. How did you deliver? Did you see a specialist during pregnancy? How long after the baby was born did it take you to feel better?I guess I am asking if she will ever be normal again, and I know there is no easy answer to this. It is so hard to see such a vibrant person who was never still a moment not able to do much but maybe get downstairs when the girls get home from school. She never sat still for a minute before she became sick last April. By September, she has been pretty much bed ridden. Thank you for your support.Linda

My niece had pots when she became pregnant. She is seeing a high risk ob and several neurologists and a cardiologist, plus primary care, etc. All are aware of her pots and at present do not feel she can go on medicine because of the pregnancy. They have told her she cannot have a csection because her blood pressure could drop even further, nor an epidural for the same reason. She is bed ridden because of the pots. The only treatment at this time is the compression stockings. Thank you so much for your input. Linda

She was diagnosed with pots before she knew she was pregnant. She is not presently on any medication. Being bed ridden is from the pots. I really appreciate your input. Thank you. She is seeing a high risk ob and they are aware of her condition. She has seen many neurologists and a cardiologist, plus many other specialists. Thank You. Linda f

my niece has had pots since September and is also pregnant.Is there anyone out there who has been pregnant and delivered with pots? She is pretty much bed ridden. She is a lawyer, mother of two girls(ages 9 & 11). She is very discouraged. Please reply. Thank You