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.

I want to know the language! I feel like crap does that mean I am a pots hole? I have only been looking at this site for two days and it is certainly reassuring to hear from others who have the same thing or similar experiences. At this point I am just full of questions? I guess everyone must go through this.

I have never considered that I might be truly depressed before. But now I feel out of control and crying frequently. I am hiding this from my family as I feel embarressed. Also, I am concerned as ernie mentioned that if I bring this up I will be viewed as a head case. Any thoughts. I don't like some of the thoughts I have been having.

I hope you find another BB that works. I have been all over the board with toprol dosage, when it is too much, I cannot think I am confused and that was very scary. At the hospital 3 weeks ago. They took me off all meds in the er and then 3 days later put me back on toporal doubled my dose to 100 mg a day -THAT WAS AWFUL.. nOw they are gradually taking me off. I will let you know how that goes. I have been taking it since OCt. I am new though to the whole pots diagnosis. I am down in the hole with all of you. I will talk to you later.

Ernie, I haven't met you either as I am brand new to this site. I am sorry for the treatment you got. On a previous hospital stay I went through something a kin to what you did only not nearly as bad. Good for you for standing up for yourself. I am so glad there is this site as you and I and any others out there with this syndrome need support and it appears there is great support here. Stick with all of us. I will be thinking of you! I can't sleep at night anymore so here I am!

I am with you Morgan, who would wish this on their worst enemy. Just the process to go through eliminating everything else it could be has taken 3 weeks in the hospital over the last year. I would pick something easier if I were going to make it up . Hang in there!!!

Morgan, My bp at the doc office was 148/99. AT the nuerologist a few days earlier it was 179/104 those are examples of where it has been. I asked the cardio at what point would he be really concerned and he said if it went over 180/100. I guess after spending two weeks in the hospital and having injured myself badly there is great concern of taking me off midorine which would make my blood pressure go down. Talk about feeling like an idiot, I just standing there introducing myself to a new neighbor I had never met and one minute I was talking and the next without any warning I did do a faceplant into the street and had serious injury. It really scared me. In the er another lady same thing happened only she ended up with a closed head injury and was on a ventilator. So they were taking me very, very seriously plus like I said I did fracture my face and nose and was bleeding every where. I hope you are getting support from this group. I just joined and feel like I need support to. It helps to talk to others as no one you ordinarily would talk to including your docs know anything about this. I said to my cardio doc on Thursday that one thing I had discovered is that none of my other docs know anything about this and he agreed they would not know and that most cardio docs ill only have heard of it but not know anything about it. Trust me as last week I saw lota of specialists -another nuerologist, got an eeg, saw my nuerosurgeon to rule out scare tissue around veins in my neck, saw my oncologist - I have pre-cancer of the breast, taking tamoxfin, also have a nodule in my L lung and diffuse spots in the right that they are watching, having ct scans every 3 months. Anyway none of them know about pots. Good luck with the ttt. I had one in the hospital they already new I had this at this point. It was like someone else said, gold standard and then all the cardio guys and gals were able to agree. It can be a frustrating process, sept of 04 i was in the hospital for a week, had chest pain and they did a bunch of tests all neg. The only problem was pvc's and tachacardia. The cardio guy that time released me when he knew i would go from 60 bpm to 190 upon standing. The nurses were horrified he was releasing me. They said, you will pass out. Well eventually I did at work one day. I was no hurt that time but I decided I couldn't live like that and went back to the cardio office, saw a different doc. He took my pulse after just standing up out of the chair and I had the same result. He did an echocardiagram just to make sure everything was okay and then he put on topral and florineff.. It was much better but then had this other time of passing out and I have ...told you how that went. So it did take a while and there was that period of time from Sept to NOV that I was very sick, headaches, dizzy, confused I had a hard time functioning and going to work. I am still working but it is difficult. I also feel very depressed at this time. I have a lot going on in my personal life and then the lung cancer scare is hard to deal with. Anyway sorry to go on forever. I hope you feel better tonight and have a good weekend.

I take 0.1 once a day along with 5 mg of midorine every 4 hours and 50 mg of topral.

Would someone be so kind as to respond as I am not sure I am doing this correctly. I posted a message last night. I spent 11 days in the hospital and I now have a positive diagnosis of pots. I have had many things happen over the last three years. Now they all make sense. It only took blacking out with no warning, breaking my nose and the orbizt around my eye to figure it out. I was twice hospitalized with chest pain. I also almost died last year after having a major surgery fused neck c3-c7. I spotted breathing and had to be resusitated (spelling?) Has anyone else had trouble with anthesia? I have another surgery coming up and it makes me nervous. My cardio doc is also an electrophysiologist and he says I should have any surgeon contact him first. Also, has anyone had a problem with high blood pressue as a result of taking midorine? Before I had pressure of 100/70 now it is anywhere from 179/104 to 148/99. Yesterday my cardio doc said for me if he can keep it under 180/100 he was okay with that. I did not ask the long term effect on my heart with that rate. He has already cut the midorine down to5mg a day. I was taking florineff and topral when I had this last passing out problem so they do not want to take me off medication as they feel I am at great risk for bodily harm.

Two week ago I was diagnosed with Pots after passing out in the street, breaking my nose and orbitz around my left eye. This certainly explains a lot of things over the last three years. I spent 11 days in the hospital and am back at work struggling everyday. I am not sure I can do it. I told the company I did not wish to get short disability. Now I hope I did not make a mistake. I am seeing a specialist, an electrophysiologist which is a specialty in cardiology. YOu probably all know that.