David_R

Firewatcher: Very well done, that gives me some names to start with. Potsgirl: It's correct that health care is socialized in Sweden. If I go abroad I will have to pay for it myself.

Thank you all who have helped me so far. Your comments reinforce my view that I should meet a POTS specialist and get a tilt table test. Janey: Thanks for telling me about Christopher Mathias at Imperial College. I found his e-mail. Do you have any idea how much it cost to get tested? Potsgirl: I agree with your opinion, I should let an expert test me. The problem is that it's difficult to find an expert here in Sweden, but I will keep searching. I have read a lot about the Mayo Clinic, do you have any idea how much it cost to get tested there? Mack's Mom: Good advice to start a topic about finding an expert in Sweden. I might do that. Caffeine doesn't affect me much. But I take the same stimulant (Concerta, 36mg) as your son, and that does help me. Yogini: I didn't know what an electrophysiologist is until you told me. If I do not find a POTS expert, that might be an option.

Hello everybody, I'm a new member. I am 27 years old and male. I have had issues with sleepiness/fatigue and not being able to think clearly for more than ten years. I've met a lot of doctors, but they don't know what is wrong. I currently get Concerta 36mg (extended release methylphenidate, similar to Ritalin). Recently I have found out about POTS on the Internet, and it seems very much like what I have got, but I'm not sure. However, neither my doctors nor his colleagues know anything about POTS, and it seems like few doctors do here in Sweden. I have read up on the subject a lot, and I have found some articles I will show my doctor next time we meet. But since he doesn't know anything about this condition, I hope that I can get some opinions from this forum. Your opinions might be valuable for me and my doctor. I will try to give you a short version of my symptoms and tests along with a heart-rate and blood pressure test I've made on my own. The story Until my mid-teens my life was as good as anyone could wish a life to be. I was very active, did a lot of sports, did well in school and so on. At that time, I started gradually becoming more sleepy and fatigue than my friends, but initially it was quite harmless. However, at the age of 16-17 I was sleepy and fatigue almost all the time and I had problems thinking clearly. I slept well at night, slept after school and sometimes in school too. More than ten years have now passed, and I am now 27 years old. The sleepiness/fatigue did not decrease after the teenage-years as I had hoped, and I have met a lot of doctors and gone through quite many tests. Every single test has indicated that I am fully healthy, both physically and mentally. The three big issues are still the same as earlier in my life; sleepiness, fatigue and not thinking clearly. The Concerta medication deals well with the sleepiness, and I am very happy for that. Regarding the fatigue, it is similar to the fatigue that comes when you are very sleepy. There are so many things I want to do, but I just lack the energy. Physically I am fine ? there is nothing wrong with my muscles and if I mentally force myself to go for a run, I run some miles as well as anyone else would. But in some sense it's like my body tells me that I am in a constant need for rest, and that is incapacitating. Regarding the thinking, I constantly feel like I have been hyperventilating. Perhaps that is what is called ?feeling spaced-out?. I feel detached from reality, like I'm in a movie. Something ?funny? is that I sometimes have word-finding difficulties for an hour or so. It's quite harmless, but it seems like a few randomly selected simple everyday words are blocked in my head. I have noticed two specific events that trigger increases in sleepiness/fatigue. The largest trigger by far is eating a meal (normal or large sized meal) regardless of what I eat. The effects of a meal is so heavy so a "normal" person would think that I lie about it. It doesn't always happen though, but sometimes I sit/lie still for half an hour after eating, and it's not just a normal food coma. It's almost like my food is drugged. The second trigger is a hot shower. The effect from a hot shower is similar, but not as severe. During a hot shower the heart rate increases to more than 120 bpm. I am 6'2" tall and weigh 185 pounds. I never faint and I never have nausea, pain or similar. Test of the heart rate and blood pressure Below is a graph of the heart rate and blood pressure test I made on my own. I did the test at noon. I lay flat for 20 minutes, stood up for 30 minutes and lay flat for 10 minutes. I have done a shorter version of the test several times before, and the results are similar with an initial increase of about 45 bpm for a minute and then it stabilizes at an increases of about 35 bpm in heart rate. However, the heart rate while lying flat is usually 60-65 bpm, not close to 70 bpm like below. The green bars are the blood pressure. The tests I have been through (all where fully normal) Sleep apnea test Polysomnography (Electrodes attached to my head while sleeping, both during night and during MSLT). Electrocardiography (Both during biking and during a 24 hour period) MRI brain scan Psychiatric evaluation Blood tests taken (all where fully normal) SR-B CRP-P Hemoglobin-B Hb EVF-B Hematocrit MCV-B TPK-B Thrombocytes LPK-B Leukocytes Sodium-P Potassium-P Calcium-P Creatinine-P Bilirubin-P total ALP-P GT-P ASAT-P ALAT-P LD-P Glucose-P TSH-S Cortisol-S Testosterone SHBG-S Questions I guess I don't need any formal questions, but still, here they are: 1. Does this seem like POTS or not? And if it does, does it seem like any specific type of POTS? 2. Are there other blood tests or similar that should be taken? 3. And if you have any other comments, I am happy to hear them! Thank you all in advance