wibbleway

I went to Vandy for all the Autonomic Testing and really found them wonderful. That was 3 years ago and they still e-mail me instantly with questions I have. Dr. Robertson and the whole staff were marvelous. I'm sorry you had a bad experience but do recommend them highly.

Thank you all so much for sharing your lives, hearts, and struggles. This disease is hard and like most of you, I am in a downward progression. Today was the first day I've been able to check my e-mail. Christmas Eve and Day took all my strength. Today I'm lying down resting. I thank God for this forum and for your stories and encouragement. Sunfish, my story sounds a lot like yours. I had a MONO type infection 20 years ago, then the breast cancer they said grew for about 10, then the CHEMO four years ago really took its toll and since then the dsyautonomia has been progressively worse each year. I too use a wheelchair for church or shopping. If I'm stubborn and don't then I always end up in the store with a full blown attack and have to sit or lie down, the clerks are bringing me water, and a washrag, and my husband is looking at me (like I told you not to do this), then it takes a couple of days to get over it. PRIDE is such a hard thing to get over. I do wish Mediacare would change their guidelines for electric wheelchairs though. I don't need one in the house (which disqualifies me) but I do as soon as I go out. One more frustration. But, Praise the Lord, I'm alive! Again thank you all. Cathy

Hello everyone! My husband asked me today to reach out and see how many others out there have been suffering with this disease for 10 years. He is so hurting over my disability. My progression was slow until I underwent chemo for breast cancer 4 years ago. Since that the disease is progressing very fast. Any adrenalin rush pushes me over the edge and I can't stand without having a spell. Also the mind fog, heart tachy, and disability of being in crowds is everyday. He sees me struggling and he sees the disease progressing faster and just wanted to know how many more of you are in my shoes. Please let me know so I can reassure him that we are not alone. I also wanted to know how many others have an accelerated progression? Thanks for the support.

I totally agree with all of you. Going to a store, a party, church, family get-togethers, etc., all cause me heavy smytoms. Today, I went to the Dermatologist and even the added pressure of her coming into the room started a spell. I had sweat pouring down my face. It is so embarrasing. I am a pastor's wife and before this disease, was very active and loved being around people. Now, just going to a function or being invited over for dinner causes me trouble. All that to say, that I know the frustration and understand.

Has anyone else out there developed POTS from having a Paraneoplastic Syndrome? Since my chemo, my POTS is so much worse and continuing to worsen as the months go by. Any info or encouragement on this would be much appreciated. Thanks!

The other day after just a few minutes up my blood pressure was 105/95 and my heart rate was 179. I e-mailed Vanderbilt and they were concerned about the heart rate. What does the 95 in the blood pressure mean?

Nikigirl, My POTS is the same way. The other day I stood up and blood pressure almost met itself 105/95 and my pulse was 179. I couldn't stand another minute or I would have dropped on the floor. The doctors at Vanderbilt have said I'm in a rare sub-group of POTS because my blood pressure rises with my pulse and then bottoms out. I can even have symtoms when lying down also. Don't get discouraged we all feel the same way. It is so discouraging not to be able to walk around or even stand and talk to people. I use a riding cart for long hauls and a walker with a seat on it so that I can sit as soon as things get worse. Take care and keep us informed.

I was wondering if any of you have blood pressure where the bottom number goes up before falling. Yesterday I was having a horrible spell and my blood pressure was 105/95 and my heart was 179. I had just been standing for a few minutes. I wanted to take it again but couldn't make it any longer. I am in a rare sub-group of POTS. Any info would be greatly appreciated. Cathy

Willows. My post was "Bad Days are so Depressing" so I understand how you are feeling. Just know that we are all here to support and encourage each other. My doctors have also said, "There is nothing more we can do." It is hard to adjust to that when inside you want to do so much but your body can't. Like others have told me just hang in there and keep in touch with all of us. Support from others is a life-line. Cathy

Thank you all! The encouragement really helps. I especially like the Chinese words. That really did make me laugh even though I tried not to laugh to much as that brings on an attack (LOL). Cathy

I agree with Sunfish. You need to cc both the doctors. With our disease, one doctor won't be as up to date as another. The one that diagnosed you and is more familar with POTS would be the one to go to as long as he or she knows you complete medical history and drugs you are taking at present. Bringing them both together would help. It is frustrating to have to many inputs from several doctors and can keep you from getting the help you need. I too have headaches especially after spells, which have been bad lately. I am on Lortab for bone pain from previous cancer treatment but I still have to have more when the POTS headaches come. Hope you find some relief. Cathy

Thank you! I'll give that a try. I guess even being able to make a pitcher of tea is an accomplishment. It is just so frustrating to feel soooo bad. You want so much to get up and go outside or go off with a friend but you can't even stand for 1 minute without an attack. It is easy to not remember that this will pass and the autonomic system will calm down and then I'll be able to go out for an hour before having to lay down again. Thank you for helping my spirits. God bless you. Cathy

I just need to vent. The past couple of weeks have been horrible but the the past two days are even worse. After a really bad spell yesterday morning, I can't even go into the kitchen without have POTS spells. I get up a minute then lay down. My chest hurts, my back hurts, having trouble swallowing, breathing, and on and on. Days like this really get me down. I woke up this morning after staying in bed the rest of the day yesterday and it is still just as bad. How do you all handle this? My husband and I have plans this weekend but the way it is now, I'll not be able to go again. If I can't even get up to go to the kitchen without bad symptoms there is no way to do anything else. Thank you for giving us a place to vent our frustrations with those who understand. Cathy

I have really been having some horrible POTS spells lately. I can't even stand up without having to lay back down again. When the tachy and spell lasts a while does anyone else get a tremedous back pain in their lower back? I do. Cathy

Thank you for all the reply's. This has been a hard time with my POTS and Dsyautonomia. My symptoms have been progressively getting worse over the past year and a half. The fatigue was bad before but now it is impossible to go more than 2 hours without having to then lie down the rest of the day. It is so hard to explain to people who don't have this disease so your reply's are an encouragement to me. Thank you all! Cathy

Tammy, Thank you for the encouragement. I don't know how you do it with a toddler. It is good to hear that others need a couple of naps a day also. Why does this disease seem to cause so much fatigue? Have they ever figured that out? Cathy

Hi everyone. I have a rare subgroup of POTS, Mast Cell, Hypovolemia, and Dysautonomia. It it getting progressively worse as the months go by. I have always had fatigue with it but lately it is horrible. The past coupld of weeks even getting up causes an attack of tachy. I am so tired that I sleep a couple of hours twice in the day and still fall alsleep at 8:00 pm. Is it best just to give in and completely rest in order to get stronger or is this just a symptom that is getting worse. I'm a patient at Vandy and this just seems to be part of it but I'd like to hear from you all on how you cope and is this not normal. Thanks for all the help and input. It sure helps to know you are not alone. Cathy

I did not have a rash with it but the tearing feeling describes the feeling exactly when I move or touch it. What is a commer? I've never heard of that. Cathy

Thank you! Today the nerve endings are so touchy that even touching my thigh and front groin area causes sharp stabs. It is awful. I do appreciate hearing from others though. It helps to know you are not alone. Cathy

I have autonomic dysfunction that is getting more progressive. Along with that is POTS. The last few weeks off and on I've had severe pain in my right thigh from mid-way from the knee to the hip. It is like hot pokers are stabbing me when I move the leg or touch it. There is also numbness involved. With rest and quiet for a few days it calms down. Today is extremely painful and I feel so alone. Has anyone else had this problem. I've e-mailed Vanderbilt but not heard back. Thanks for any help. Cathy

I have had an electric wheelchair and now have a scooter. The scooter wins hands down. I love it. The electric wheelchair required a special lift that I only had on one car, so using it with others was impossible. The scooter is faster and easier for me to handle and I can fold it down and with help put it in the back of an SUV or trunk. I have used it to go up the street to the store and just love it. Hope this helps you out. It has really been a God-send for me. Cathy

Alicia, I have a drop whether I'm lying or standing. At Vanderbilt it was found that I have problems with any change in position due to hypovolemia. You are not alone.

It has been quite a while since I've been on the forum. Recently I've been having problems breathing. It is like I have to gasp for air at times. Has anyone else had this problem assoicated with POTS? Any info would be appreciated. Thank you all.

Boy can I identify too! I go for my scheduled visits just to hear "We can't do anything." What is frustrating is that when you really need a doctor to listen because they are frustrated with not being able to help us, they just fluff us off. I have Pnuemonia right now and I went back to my GP yesterday because I was still hurting. With POTS, sickness takes so much longer to go away. Well he came in and looked at me and said, "What are doing here so soon. Are you fixating on the Pneumonia." What kind of question was that for $120.00 per three minutes. Needless to say we are going to look for another GP but now I have to go through explaining all my problems again to a new doctor. I begin to feel that since they really can't help me with POTS, I just won't go to anymore doctors concerning that. Oh well, sorry to blow off steam but yesterday was horrible.

Thank you! I will give the wrap a try. Cathy