Monday, December 24, 2007

Medical Tests

I've decided I'd like to document my medical tests. I've had several... some for POTS, some not for POTS. For the purpose of this, I'll only talk about the POTS related tests.

Blood Work
Blood work upon blood work upon blood work. The first time I had blood work (that I remember) I was 15. Three or so vials of blood were taken. I became so pale, clammy, nauseous, and light headed that I was nearly admitted to the emergency room. Since then I haven't had NEAR that reaction. I've had blood taken from me more times than I can count

Hypoglycemia Test
I had this test when I was 17 to determine whether or not I had developed hypoglycemia. You fast the morning of the test and they take some blood when you first get there. Then you drink the most disgustingly sweet thing you can imagine and wait. As I recall during this test I had no symptoms of hypoglycemia, but the test came back positive for it anyhow. Hypoglycemia is when your body produces too much insulin. If you eat a lot of sugar too much insulin is released, thus plummeting your sugar levels, making you cranky and headachy and foggy.

Autonomic Function Test- Take 1
I had this test the first time around when I was 15. I don't remember very much except for the fact that it made me feel like crap and become quite nauseous. In this incarnation of the test I was strapped to a table lying down for 10 minutes and then tilted up for 10 minutes at about a 70 degree angle.

Holter Heart Monitor
This test involved me being hooked up to a portable EKG machine for 24 hours. I had this test in September of this year. It was actually quite easy to conceal: the wires were all under my shirt and the machine was the size of a pager. I had to write down in a little diary when I'd have symptoms and what they were. I also had to make note of when/if I was exercising, drinking caffeine or alcohol, or engaging in sexual activity. Seriously, who does that? I was able to go to class and do what I normally do, except I didn't go to the pep rally that night with the marching band (which I'm an active member of) because remembering pep rallies of years past I knew it was going to be close quarters in the dark. We do horn swings in the band and I didn't want some freshman who hadn't gotten the swing of things yet (yeah, pun intended) to ruin a very expensive machine. My band director was quite understanding. After 24 hours of having the monitor on, I went into the bathroom during a class break and yanked the electrodes off. This left visible marks that didn't go away for a week that I referred to as my alien hickeys. The test showed that at one point my heart was beating so fast that they thought I was exercising, but I wasn't. I was sitting at my desk at my nonphysically tasking office job.

Autonomic Function Test- Take 2
This test was the most recent (December 6) and by far the most interesting. I had to withdraw from my antidepressant (which SUCKED) and my steroid (not much fun either) and abandon my trusty compression tights for that day. Oh, did I mention this was the week before finals? Instead of being just the tilt table that I had when I was 15, it had three more components.

Sweaty
This part was a sweat collection test. How do they make someone sweat who is strapped to a table? By putting 4 receptors and electrodes on select places on your body (forearm, upper calf, lower calf, foot), injecting them with acetylcholine (a neurotransmitter that stimulates, among other things, sweat) and adding an electric current. The result? A mild burning no more uncomfortable that the "oh my god these pants are chafing me" pain. During this test I looked like I was in Frankenstein's Laboratory.

Yoga Breathing
This test involved looking at ascending and descending lights and breathing in as the lights went up and out as the lights went down. Not too bad.

Pressure Breathing
This part involved breathing into a device that kind of mimicked the sensation of attempting to blow up a skinny balloon with your mouth. During this test my face got really red and my heart rate shot WAY up.

Tilt-Table
For this part the doctor in charge of the lab I was in was brought in the room (until now I was dealing with a tech, who was pretty cool). I liked this doc, he really seemed to know what he was doing, which I haven't found a lot of. He also had an appropriate sense of humor, which I really enjoyed. They let me lay there for a few minutes to get a baseline heart and blood pressure reading. I was hooked to electrodes on my back as well as a cuff on my arm which took a reading every 5 minutes, as well as a small cuff on my wrist which did automatic readings and periodically needed to be adjusted. Once the baseline reading had been gathered (HR- 80 bpm, BP- 122/80) I was tilted. I immediately became lightheaded, hot, and slightly nauseous. It was not fun. In order to procure a POTS diagnosis your HR has to go up 30 bpm during the tilt, which lasts for 10 minutes. My heart would jump around from 90 one second to 105 the next. At times it would hit the mandatory 110. At this point the doc called it "Borderline POTS." My incarnation of POTS is not NEAR as serious as some other cases (i.e., I can still go to school, work, and even stand up. Some POTS patients are confined to wheelchairs), so this didn't surprise me. However, with a minute left in the test my HR shot up to 120 and 125. At this point the doc and tech began yelling "Alright, sell!" which I thought was pretty funny. Once I was taken down the doc confirmed the POTS and stated it was mild. However, mild POTS is like a mild hurricane: it could be worse, but it's still going to do some damage.

I go back to the general internal medicine guy I've been seeing in January. The lab doc suggested a low dose beta blocker. What I've read about them seems a bit daunting, but everything you read on the internet about drug therapies is scary. If I do start a beta blocker, I will probably withdraw from my Paxil just to stay on the safe side (I've read about some interactions with antidepressants). I guess we'll find out on January 11.

5 comments:

Elizabeth McClung said...

I am glad to find your blog, though this isn't a haha post I enjoyed reading it simply because I have been trying to get my doctors to do a tilt table test for a year only most have never heard of it - and it turns out that a neuro specialist AND a heart specialist have to agree (welcome to Canada - so still a year away). I just love you quoting BP and BPM - I mean, I check mine several times a day and do tests with doctors and most people don't know them so when you say, after I stand and sit I have a BP of 180/156 with a heart rate of 173 they go, "Gee, you must be pretty athletic" -

Holter Tests - love em - as I have a bunch and you can take them to several specialist and get several different opinions (particularly if you are sinus tach - they will dismiss almost anything if you are sinus tach with normal wave signs - I had one say, "you must have thought of something scary" when I had a series of erratics that were 212 bpm. Something scary? Oh yeah, the way they rip it out - I had this guy on a bus go, "Miss, there's something caught on your shirt" (it was summer and two of my leads were visable) - I told him, "It's the new wave of fashion; medical punk!" - he just looked confused.

I want the sweat test but they don't do it in this city but that pressure breathing one sounds VERY interesting.

I am sorry you have this and I do understand (I pass out several times a week - sometimes a day due to Orthostatic Hypotention), I have one of the other autonomic failure conditions though so I will be back to read more (But my partner just woke up and is like "What are you doing, you should be in bed!")

Cheers and happy Xmas

Lynne said...

t is really nice to know there is someone else out there that is getting through this problem. My name is Lynne and I am 43 years old. I live in London England and I have been suffering with Pots since May 08. The meds are not working very well and I have been bed bound for most of the time as when I get up my pulse goes up to 150. I have completely changed my diet which is now beginning to help. Lots of salt and I am following the GI diet (although I am not actually dieting but I only eat GI foods). This has really helped and I eat very small meals approximately every 3 hours. I am not well enough to exercise yet and I really miss this as I used to walk for 2 hours every day. I plan to get an exercise bike with a chair so I can start to exercise slowly again. I also have Marfans syndrome and I have been told that no one else has both Pots and Marfans. I am due to be admitted into hospital to start taking Midrodine as well as Atenolol. I am only on a paediatric dose of Atenolol as I can not tolerate the adult dose (my BP goes too low and in fact even on the paediatric dose it still goes low, hence the doctors wanting to start me on Midrodine). If the midrodine does not work then it is looking like I will have to have a pace maker. Thank you for this great blog, it is really helpful. I will let you know if I find out any other good tips. Good luck for the future, Lynne
5th October 2008

Anonymous said...

We have also been through all of the above tests and many more, my daughter started blacking out several times a day in October 07 and we got a positive result for POTS only 6 months ago, she has had a pacemaker fitted but this only gives her warning as to make the blackouts into a passing out which she now gets a few seconds warning, she has been on Ephidrine 45mg 3 times a day for 6 months (in various doses) but this makes her "edgy" so we are back to see our fantastic consultant who has suggested Midrodine, hoping this will improve her life significantly as at the moment she is "passing out" up to 20x a day for periods of 3-4 mins a time.

Anonymous said...

I have been having episodes since 1995 and it was only in 2007 that I was diagnosed with POTS. They put me on Topamax for migranes (which I was not even aware I was having even though I did have headaches, especially after an episode). The Topirimate caused me to have difficulty speaking, thinking and remembering so I took myself off them after consulation with my brother who is a Doctor of Pharmacy. The specialist wants me to go back on them but I don't want to because I prefer the headaches to the "zombie" I was whilst on them. I am still not on any medication for the POTS despite it being a year since I was diagnosed. I have tried the extra salt and water and have noticed no difference - and the compression tights made me worse. I also suffer from Ehlers Danlos Syndrome 3 (Hypermobility) and this may contribute to the POTS as it is a connective tissue disorder (Marfans Syndrome is Ehlers Danlos Syndrome 4). I want to get my life back and want to get some medication. I have up to 15 episodes a day that I remember and about as many that I am not aware of.

I also suffer from back ache and the doctor wants me to do more exercise, and get off all the medication I am taking to stop the back spasms before I go on the medication. Only I can't stand up for more than 10 mins, and any exercise reduces this time, and I need the medication to do any exercise - it's like a vicious circle!

I find these blogs interesting because it is helping me to understand my condition more and the side effects to be aware of - and the fact that some of the symptoms I am suffering from, others also have. I think we need chat rooms like this to help us, because I am not getting much help from my consultant.

Anonymous said...

Hi Elizabeth. I am so glad it helped you. In fact I have been so much better since I was put on a timy dose of Seroxat (10mg). The doctor put me on it in February this year to help me with the stress of being in a wheelchair etc and now it is like a miricle cure. I am out of the wheelchair and nearly living a normal life. They think that stress is a big factor with pots. How can you not stress tho when your heart is beating so fast, it is a visious circle. I saw my cardiologist last week and he is very interested in this treatment as he said that during the tilt table test if somone's BP dropps drasticly this is a drug they can use (it is the 4th drug in the choice of drugs they use as it is quite an old fashoned drug and has gone out of favour). I must update my blog and share with others but maybe this is something you could talk to your doctors about and I really do hope it will help you in the same way it did me. I have had to give up work now and I also think that not having that stress any more has also helped. I wish you lots of luck. Lynne