Amy

You know it is funny. But then again it is. When I read everyone's list it made me laugh. I felt like we could all poke a little fun at ourselves with this topic. How special we all are to have all these doc's. Everytime I have to see a new specialist I am amazed at all the specialty fields that exist. I won't bother to list all on mine but put a couple of the ones that really caught me off guard! I count 14 to 15 different specialities I have been referred to. Most not related to pots. My latest was went to the opthamologist for a routine eye exam. I knew my eyesight had been failing but thought must be that I am 46 and I need glasses big time. Come to find out my vision was blurred and uncorrectable. Sent to the hospital for some testing. Then sent last week to a nueroopthamologist. I was told i have shunt vessels in my eyes, probably as a result of a small stroke TIA. I have been hospitalized twice with that concern but never able to find evidence via MRI and a million other tests. Well this is the evidence. Thursday having two tests to measure the blood flow in the vessels in my eyes. An angiogram of the eye. I never even knew these things existed. Very scary and puts me at great risk for a major stroke. But at least I know I am not crazy. Anyway thanks for listening.

I am sorry to hear your news. You and your husband are in my thoughts.

I don't know which meds are causing what. I got put on a lot of stuff all at once. I continue to have high blood pressure from the meds 150/110. The 110 is the big problem. Now they have doubled my topral to try and calm the effect of the Midodrine. I also take florineff but did not know that could cause high bp. I was a little worried about a stroke with the bp problem. My cardio said anything above 110 bottom number is an emergency. Anyone have experience with this?

Morgan, Hang in there. Tomorrow is a new day. I am thinking about you. Amy

Wow - balancing the drugs is very difficult. I never took any meds long term until last Oct. This is quite a change for me. I felt bad tonight, had the feeling my blood pressure was high again. Since I started taking Midorine I have had a problem with high bp. It was 126/104. The bottom number scares me. My cardio said 110 on the bottom is an emergency and if it every gets to that point to go to the er. His goal is to keep me 180/100 or under. I take topral and midodrine. He wants to try taking me off of topral but now I am afraid my bp will hit the ceiling. I seem to go from one extreme to the other. I am taking very small does. They have cut back everything because I am extremely sensitive to drugs. Has anyone else had this problem?

Does it ever occur in just one eye. I just went to the optomologist and discovered I have blurred vision in one eye. My vision had dramatically gotten worse both for distance and close up which was alarming in and of itself. In my left eye they could not correct my vision to 20/20 which again was alarming. They sent me to the hospital to have a field vision test. It showed the same thing problem in my L eye. Part of my field of vision I cannot see anything out of. Next I am going to a nueroptomologist. Anybody else experience something like this?

I think tea, cookies whatever you got would be great! I am eating for everyone. That is what I do to battle stress. Not good I know. My grandson's 4 and 11 months were just here along with my two of my daughters that always is fun and BUSY!!! They live near by. From the pots hole perspective they have been doing road repair on my street using some equipment to dig big big holes - well I am pretty sure they dug a pots hole for me and I fell in! Since I am new to this particular way of thinking about my health it is hard to know what is pots and what is other things going on. Do any of you have a hard time telling what came first the chicken or the egg. This week I found out I have a problem with my left eye. Went to the optomologist for a routine exam, expected to hear I am getting old eyes and need glasses. Instead, I was told I have blurred vision in my L eye, need a special test at the hospital (did it today) and then have to go see a nueroptomologist at University Hospital. They are concerned due to many nuerological problems I have had in the past year. I will keep whinning a little longer. Due to a dry cough, now had it for almost 6 weeks. They haved moved my lung scan up. I have it May 4th. They do their best to scare you half to death. My pulmonologist was alarmed!! I didn't even call the oncologist. Anyway as for pots this is DIZZY AMY ! I am busy trying to get up everyday and go to work. I barely have time for work with all the doctors appointments!! Hope everyone if the pots hole can get road repair to come and fill your hole so you can be on top of the hole!! Tea and cookies to all of you!! Amy

Thanks everyone. I have taken Quinine before and found no relief. I get these cramps off and on all night long. I do take a bath to stop the cramping but, it comes right back later. What I think happens is everytime I move when I am asleep that it triggers cramping and that is why I am up all night. Just as soon as I get back to sleep here comes another one. It is very frustrating when you are exhausted to just get back to sleep or maybe just back to bed and then BAM! Also, I don't about the rest of you, but I jump up as a reation - and then really pay for that movement with severe dizzness from having moved so quickly. I am sure it will get better, I am just having a bad time and finding myself short with my family and not having a good time.

Does anyone else get severe leg cramps and feet cramps? I do not know what to do as I cannot sleep. I don't about fatigue from pots because I am fatigued all the time because of true sleep depervation. Does anyone have any suggestions. I feel the need to go to the doctor but fear after what I have been reading from all of you that I won't get any response. I have just newly been diagnosed with this and do not know if my cardiologist it want to deal with the symptoms. My GP, I love him but he already told me he has never even heard of Pots, my oncologist has also never heard of pots. These are the two people I really rely on to keep me going and able to work. I am scared for my future for the first time in my life.

Blackwolf, I have used this type of therapy as I have a severe cerival spinal problem, completely fused from C3-C7 with plates and screws, have had three awful surgeries. Anyway I thought after the last surgery a year ago that it was very helpful. I was desperate with pain and if was a godsend.

I see (physiologist)Cardio guy as well. I also see a hemtologist/oncologist (but have other cancer concerns) and primary. Only one who knows anything is the cardio guy. I have several other doc's that have done certain tests but don't think I will be seeing them on a regular basis. I have seen many doc's for other problems as some others have stated, I wonder now if it is all related to the POTS. Good luck, I am just starting this wonderful trip!

I was just going to ask about complexion problems.. I am 46 and have never had a problem with breakouts, all of the sudden I am having these (sorry for detailed description) large bumps starting way under the skin that take days to erupt. They are large and everywhere. I was wondering if it was POTS or the meds or what. My menstrul cycle has had influence over the years but just a pimple once in a while. WoW What does Roseaca look like? Keeping all of you in my thoughts! AMy

Thanks for your thoughts. Like many of you I think I have been experiencing pots for a long time and just didn't know. I am sure I have many experiences that qualify as being in a pots hole. I am trying to climb out now but it is difficult.. A couple of you have referred to chest pain... that is what really started my doc's down the investigative trail was chest pain that seemed to start out of the blue. They could see PVC's on the treadmill as I was saying I was experiencing chest pain, they new it was real as I was able to tells them and them see a real change on the screen at the same time. Because most of those I encountered in the hospital on my last stay new NOTHING about POTS every time they asked if I was having chest pain I always said no because their response would have been inappropriate had I said yes. I get fleeting chest pain often and it is disconcerting. I am looking forward to getting to know all of you better. Hang in there and thanks for supporting me and everyone else.

It is me again, sorry for the misspellings, I am just not sharp anymore.

2 weeks ago when I was hospitalized the last test that was done was ordered via endocrinologist checking adreline level. I want to know why go to this doctor. What are we looking for? The cause of pots, relief of a particular symptom or what? I am just learning about all of this. I did ask my cardio doc are we sure my blacking out is due to POTS and he assured me yes. After breaking my nose and my orbitz I have real fear of hurting myself if I faint. As I mentioned in another place since I am also fused from C3-C7 in my neck I also work about a spinal cord injury if I fall. So I want to feel 100% confident of the cause.