Do I Have Pots? (my Doctor Doesn't Know About Pots)

[David_R]

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

[Janey]

Dear David,

I'm sorry you've been going through these symptoms for so long, and I think all of us here can empathize with a lot of them. I looked at your graph and I would definitely say that the statistics on there are indicative of POTS. It's impossible to say what type of POTS without you having official testing and for doctors to see exactly how your HR and BP react to orthostatic changes.

I think we've all come to realise that there are no one set of symptoms for POTS, and a whole host of symptoms can occur for different people, yet the condition is still the same. It seems like it should be a simple heart rate and blood pressure matter, but often people with POTS feel like they have run a marathon everyday, and that certainly seems to tie in with what you're feeling. I especially empathize with the feeling of being "spaced out." I described this same feeling to my doctors and they too said it was a symptom of POTS.

What I would recommend you do, is to get your doctor or cardiologist to give you a tilt table test for POTS, or if they can't do that, get them to take your HR and BP lying down and then standing up, so that you can show them there is an autonomic problem. If worst comes to worst, the POTS specialist in the UK, Professor Christopher Mathias, accepts patients from Europe and Scandinavia, and if you can afford the flight, you can come over here and see him. His email address is available on the internet, but if you can't find it I can send it to you.

All the best

Janey

[potsgirl]

Hello David,

Welcome to the Forum! While I know you're anxious about your symptoms, I want to stress that we're not a diagnostic community, nor should we be. The main purpose of this site is for support and to pass along information we learn along the way, as we're diagnosed and go through different symptoms and to cheer on our successes and to help out when there are disappointments.

I feel that our forum is getting too close to trying to be diagnostic. We can't play that role. We need to encourage those who are not diagnosed yet to see medically appropriate physicians - to find good doctors who know about dysautonomia. David, please find a good neurologist or cardiologist who will perform a tilt table test for you, and get you on an appropriate treatment regimen. There is a list of good physicians on the home page of this site, and if you're in a particular area of the country, there are usually members of the forum who can recommend good doctors to you. A lot of us have also gone to places such as the Mayo Clinic (MN location), Vanderbilt Institute, the Cleveland Clinic, and other places renowned for their work with POTS and associated diseases.

Welcome again! We will help you find a reputable place/physician to be diagnosed, and support you along the way. We can share tips and things that work for some of us, while other regimens work for others. We discuss exercise, drugs, and medical breakthroughs. We just can't tell you information and give you the knowledge that you need - that's up to the physicians.

Cheers,

Jana

[juliegee]

Hi David-

Welcome. Looks like you're in the right place . What a wonderfully thorough job you did of tracking HR and BP- your own "poor man's tilt table test." Many dysautonomia specialists actually think that is MORE reliable than a TTT, as it more closely simulates real life.

From the diagnostoc criteria published here on DINET, it certainly appears that you have POTS. Jana is right though. An appt. with a physician, who understands autonomic dysfunction, would be the next best step for you. S/he will be able to help you figure out which type. I hear your dilemma about not being able to find one. We certainly have that same problem here on the states. Maybe post another thread entitled "Help me find a dysautonomia doc in Sweden!" Maybe there are other Swedes here who can help you.

My son is 17 y/o, has dysautonomia, and is also VERY fatigued. At this point, THAT is his most prominent symptom. I would guess that your fatigue is worse after a big meal because your limited blood supply is re-directed to your GI tract. Less blood is available for your brain/heart. Fatigue following a shower is really common. The heat causes fluid loss (via sweating) and lowered BP. Lots of us get woozy, lightheaded, and fatigued in the shower. Many feel better if they shower in the evening and just wash up & re-wet crazy hair in the AM.

Many with POTS and all forms of dyautonomia have low blood volume. That means that you don't quite have enough blood AND, for many of us, it doesn't circulate properly throughout the body. Try to drink as much fluid as you can & supplement lots of extra salt in your diet. Somehow that translates into a higher blood volume for many of us.

Also, you may benefit from eating smaller meals throughout the day. Rather than 3 meals, try 6 with very small portions. The reduced food amount may be easier for your body to digest, leaving enough blood to circulate throughout your body.

How do you react to caffeine? Some do better. Others have a bad reaction. My son drinks coffee thoughout the school day & takes a stimulant medication called Concerta. Both help with his fatigue.

Keep posting, asking questions, and try to find a knowledgeable doctor. You deserve a better quality of life.

Julie

[yogini]

That's a pretty cool chart. It does sound like you have POTS. It's amazing that you found our website all the way from Sweden. If there aren't any POTS specialists in your country, mabye an electrophysiologist (cardiologist who specializes in heart rhythms) can help? There are lots of people here from Europe, so maybe they can help you find someone nearby.

[David_R]

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.

[firewatcher]

David, I did a brief search for POTS and Sweden and found this article. There are apparently researchers in Sweden familiar with POTS. I will keep looking to find out the institution for you, or you could call one of your major medical universities and start there. Use "Autonomic Dysfunction" when asking for specialists and you might get more responses.

Arterial orthostatic anemia and vasoregulatory asthenia-Swedish research on postural tachycardia syndrome-

Accession number;05A0937631

Title;Arterial orthostatic anemia and vasoregulatory asthenia-Swedish research on postural tachycardia syndrome-

Author;TAMURA NAOTOSHI(Saitama Med. Sch.) TAMURA NAOTOSHI(Saitama Medical School Junior Coll., JPN) SHIMAZU KUNIO(Saitama Medical School Junior Coll., JPN)

Journal Title;Autonomic Nervous System

Journal Code:Z0732B

ISSN:0288-9250

VOL.42;NO.3;PAGE.219-228(2005)

Figure&Table&Reference;FIG.1, TBL.4, REF.61

Pub. Country;Japan

Language;Japanese

Abstract;Concerning arterial orthostatic anemia and vasoregulatory asthenia, Swedish researches on postural tachycardia syndrome (POTS) are introduced. In this paper, arterial orthostatic anemia, vasoregulatory asthenia, basic researches and a research paper by Thulesius are shown. In Sweden, the recognition that the true conditions of POTS may be the abnormality of the venous itself or of the reflection of vein system has become the consensus.

I found this, it may be a place to start:

Clin Physiol Funct Imaging. 2008 Sep;28(5):312-7. Epub 2008 May 7.

Assessment of autonomic symptoms in diabetics: the Swedish version of the Autonomic Symptom Profile.

Mandl T, Granberg V, Apelqvist J, Wollmer P, Manthorpe R, Jacobsson LT.

Department of Rheumatology, Malm? University Hospital, Sweden. thomas.mandl@med.lu.se

OBJECTIVES: Autonomic dysfunction (AD) is a complication of diabetes and may be associated with troubling symptoms and increased mortality. Commonly, AD is detected by objective physiological tests and only recently, a validated self-completed English questionnaire assessing AD symptoms, the Autonomic Symptom Profile (ASP), was developed. The aims of this study were to translate the ASP into Swedish and evaluate its reliability and validity. METHODS: Forward and back translations were performed. Thirty-one patients with type I diabetes, 200 population-based controls and two AD experts participated in the study. Test-retest reliability was evaluated by letting 25 patients to fill in the ASP twice. Content validity was evaluated by two Swedish AD experts and construct validity was evaluated by studying associations between the ASP total score and five objective autonomic nervous function test variables. Finally, discriminant validity was evaluated by studying differences in the ASP total and domain scores between patients and controls. RESULTS: The translation was accepted without changes. Test-retest reliability and content validity of the Swedish ASP were considered good. The construct validity was considered acceptable with two significant associations between the ASP total score and the autonomic nervous function test variables. In addition, discriminant validity was considered acceptable with regard to the ASP total score as well as the sexual dysfunction, sleep disorder and vasomotor dysfunction domain scores significantly differing between patients and controls. CONCLUSION: The Swedish version of the ASP was considered a reliable and valid instrument for the study of AD symptoms in patients with type I diabetes.

PMID: 18462437

Edited March 8, 2010 by firewatcher

[firewatcher]

David, this is what I found. The same names and hospital keep popping up:

J Hypertens. 2010 Mar;28(3):551-9.

Consequences of orthostatic blood pressure variability in middle-aged men (The Malm? Preventive Project).

Fedorowski A, Stavenow L, Hedblad B, Berglund G, Nilsson PM, Melander O.

Center for Emergency Medicine, Malm? University Hospital, Malm?, Sweden. artur.fedorowski@med.lu.se

PMID: 19952779

J Hypertens. 2009 May;27(5):976-82.

Orthostatic hypotension in genetically related hypertensive and normotensive individuals.

Fedorowski A, Burri P, Melander O.

Department of Medicine, Malm? University Hospital, Malm?, Sweden. artur.fedorowski@med.lu.se

PMID: 19402222

Auton Neurosci. 2002 Apr 18;97(1):55-8.

Hypersensitivity to noradrenaline in human omental vein but not artery isolated from a patient with idiopathic orthostatic hypotension.

Hidest?l J, Fredriksen S, Hall?n M, Westerdahl J, Thysell H, Bodelsson M.

Department of Anaesthesia and Intensive Care, University Hospital, Lund, Sweden

PMID: 12036187

I would think that these doctors would know about POTS and who to send you to for a correct diagnosis.

[potsgirl]

Firewatcher,

You're terrific! What great research.

[potsgirl]

Hi David~

It sounds like you've got some good options in Sweden, and Firewatcher certainly did her homework! In regards to coming to the states for medical help, the expense would be directly dependent on your insurance. If I remember correctly, you have a different type of medicine in Sweden - isn't it socialized? That would obviously be your best bet - to stay close to home.

Good luck!

Jana

[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.