Potsluck007

His full name is Dr. Ramesh Khurana he practices at Union Memorial and John Hopkins. When I called the first time and spoke to his assistant he called me back and made sure I was added to the wait list as well which I thought was nice. He's a neurophysiologist 410-554-2286 was the number I called. I am excited to learn more about what is going on and from what I understand he's pretty knowledgeable in this field but I haven't seen him yet. I actually got his name off of a post from the forums.

Gemma You might want to check into seeing a specialist down in Baltimore Dr. Korona I think that's his name I'm seeing him in November. he is like seven months out. But he's pretty close to us. He is like an hour away from York. I heard he does all his test in his office. he takes his time with this patient is very good I heard I don't know I haven't seen them yet.

Gemma, I'm in PA as well and I'm going to look at going Rochester Minnesota Mayo Clinic there. I have a appointment at Vanderbilt in February I like to see if I can get into Mayo Clinic in Minnesota. I live in the center Of Pennsylvania. Right below Harrisburg. I think that driving may be 17 hours. If I fly I think it's two hours I have to check with my doctor. If you scroll up I think Jackie went to Rochester Minnesota to Mayo Clinic .

Hello, Gemma I take Xanax before I go to bed every night. Taken one of them I sleep better than I ever have. I didn't know there was a problem With Xanax and having pots. I'm new to all this so I'm gonna have to ask my doctor if I should be on it or not. I just hope people here can let us know if there is a problem with Xanax. I know if I asked my doctor he is not going to know. I'm Looking for a new doctor in my area.

Jackie, Thank you for sharing your very informative experience. I will look into the Mayo clinic after hearing everything. I believe the doctor I saw at JH was an electrophysiologist and he did a thorough examination. I didn't have any testing done at JH. I'm hopeful to get a more definitive autonomic diagnosis so I know everything I can about this. I'm very pleased with all the information I have received at this forum and look forward to sharing experiences to help one another out.

For me I stopped Drinking coffee when I got sick didn't know I had Pots, I haven't had a coffee in six months, Two weeks ago I started drinking coffee half-Coffee and Half water, one a day after drinking the coffee I walk for an hour. I used to drink 8 to 10 cups of coffee a day sometimes two or three an hour. I think I might try the cold coffee Starbucks coffee , maybe the heat increases the body temperature of the hot coffee. I get a warm feeling throughout my body after drinking hot coffee. But then again it might be from the walk.

Kayjay, I see your in PA as well , I like to know if you fly to Rochester mn, or did you drive long trip. I just Worry about the oxygen level on the plane. They say that the Cabin pressure in a plane is 6800 I don't know what my oxygen level would be 6800. I use a pulse oximeter and its goes from 95/98 all the time. Loonymom, Here is a very short story of how I got pots. I don't think I have a virus or infection. But then again who knows, It all started back in December when I had a lump come out on the left side of my chest. It hurt so bad it stopped me for about 2 to 3 minutes then I went to a party felt terrible, left after a bout five minutes. While driving home we drove past the hospital I pulled in. They did a stress test and kept me overnight because of my low heartrate. Everything checked out fine except they but me on a holter monitor which showed episodes of bradycardia and tachycardia. Three days later I hit my head on I-beam twice in about five minutes very hard it did not knock me out I didn't go down but I had a headache. Went to my family doctor said stop worrying about your health. Did not tell him about hitting my head because I didn't think nothing of it. My vision was like a halo around everything for about two weeks and then it went away. Then I started getting chest pains and shortness of breath so I went to the hospital I was there for about 5 to 6 days came home for a week and couldn't get out of bed. Went to a different hospital and I was there for a week. They did a tilt table test on me and said that I had pots. They also did a head scan and echocardiogram. Head scan fine except for pituitary tumor and echo now showed impaired ventricular relaxation type I diastolic dysfunction which wasn't on the one done in December. Another thing I drank about 8 to 10 cups of coffee a day and I stopped when I got sick in the hospital . Eight months before all of this I had cold hands and cold feet I would sit on my hands while sitting at the computer switching hands. I'm still all new to this but just can't understand how at 45 this just popped up in my life. Stumped.

I did check the dinet list and that's how I found Dr. K in Baltimore. I have an appointment with him in November and I am on the wait list. Frustrating trying to see the specialist in this field seem to take time but I look at it like everyone else is anxiously awaiting their appointment just as much as I am. I am hoping that he can at least work with my doctor here regarding the medications and possible solutions so at least they'll both be working together. I'm just excited to see a doctor familiar with this condition so I feel more comfortable. Funny the rashes I get from time to time go away within a day as well. I too get some purple prickly type spots on my legs that go away and don't bother me. I'm assuming that's from the pooling. I'm really grateful for all of the comments and support. Hopefully after my visits I'll come back with some medical information that might be helpful for someone else.

Cortisol level was 13.4. BP is usually higher in the evening and is usually normal when laying down. I'm going to talk to the doctor about the heart thing. Good to know its not just me with diastolic dysfunction. What should a cortisol level look like?

My ACTH level was less than 1. My insulin like growth factor was 241. My prolactin level was 11.2 on a scale of 3-13. I'm not sure about the other tests listed. The endo doctor didn't seem to think it was secreting. I'm also concerned about the diastolic dysfunction they saw on my echocardiogram and didn't speak to me about. The heart finding was a change to the echo they did 4 months prior so something is definitely affecting my heart. As for a virus I don't believe I had a virus but I did have a strange rash on my chest and thighs and even on my calves two months prior to starting the POTS symptoms. The doctor I saw at the time prescribed steroids for the rash. I've mentioned to all the doctors I saw and they tested me for Lyme but no positive results on that. From time to time I will get a small break out rash which goes away on its own. Now i have these blisters on the palm of my hands. Stumped. Just trying to figure out how a perfectly healthy and active individual develops POTS. Was just thinking if I find the cause perhaps that would assist with the care. I didn't even give Mayo a thought until joining this forum so I appreciate all the responses. When you go to Mayo is it for a one time visit or do they keep you for a couple of days to run tests. Or is it dependent upon your case?

The tumor is on my pituitary gland in the brain and the endo doctor rechecked my levels and stated they were fine and the tumor was a microadenoma and not producing anything. My aldosterone came back at a level of 1 after the recheck and my catecholamine level total was 155. My metanephrine total came back at a total of 50. Now my renin activity came back at .12 and should start at a .25 and my aldos/pra ratio came in at 8.3 but should start at a .9 but doctor didn't say anything about that level. The endo doctor seemed to be comfortable with those levels. Still makes me wonder how something growing on your master gland doesn't have some affect on how you're feeling.

After much research, I am left wondering quite a bit with my diagnosis. I am currently diagnosed with autonomic dysfunction and suspected POTS. Like most I had a lot of trips to the ER with no answers and a lot of doctors shaking their head in wonder. The most frustrating part of my journey is the lack of knowledgeable doctors in my area. I'm in Pennsylvania and was referred to John Hopkins. Not the experience I was hoping for except the prescribed Midodrine and their referral to Vanderbilt in Tennessee which I don't have until February. I found Dr. K in Baltimore and have an appointment with him in November. Right now I am seeing a cardiologist to monitor everything but I can't help but feel that he is even perplexed. Prior to any medication I was extremely tachycardia so the medications Florinef and Midodrine on board have provided some support but I'm still unable to have a normal life. Now in the evening I have low heart rate sometimes in the 30's which make me feel terrible and kinda leave the beta blocker option out. I've also been diagnosed with a pituitary tumor which they don't believe is active. But I also can't help but wonder if that is having some affect on my condition as my eye sight has gotten worse and I'm constantly in "fog". I was also diagnosed with aldosteronism and my echo said there was a change from the one three months prior in that I now have impaired ventricular relaxation / type I diastolic dysfunction which I only came across on my own by looking up my records AND not one doctor has talked to me about this result. I'm now developing these weird clear blisters on my hands and they are very sore and occasionally I get these weird rashes on my chest or my thighs. I guess the point of my rambling is after reading a lot of the posts, which are very informative and helpful, I'm left wondering if Vanderbilt is the best option or if perhaps the Mayo Clinic would be a better choice. How long does it take to get an appointment at Mayo and is it the best option. I was hopeful about my appointment with Hopkins but don't want to have another bad experience. I would just like to investigate fully my options and the best choice. Any help anyone could share on their experience with Mayo, Vanderbilt, or Dr. K in Baltimore and their appointment timeframe would be greatly appreciated.

Hello I am new to the forum and I have suspected POTS recently diagnosed with a TTT. I went to John Hopkins in Baltimore and they referred me to Vanderbilt in Tennessee. My question is how many have been to Vanderbilt and what was their experience? I will be traveling from Pennsylvania and I am curious as to how long I will be there and what type of testing they will perform. My appointment isn't until February but I would like to be prepared. I am hoping they will be able to give more definitive diagnosis and suggestions that will help me acquire a functionable life. My appointment is with Dr. David Robertson.