Note: This is my personal account on the occasion. It is possible that my understandings or impression were wrong. Please don’t make judgement based on this post.
I was disappointed and very confused that the Tilt Table Test result was negative, despite I was having orthostatic distress…
Testing clinic had very tiny space and it was difficult to move around with wheelchair. Floor was carpeted and I had trouble pushing the chair with weakness. One of the patients helped me to get around. Receptionist was nice, friendly and helpful.
Attending Nurse (?) was nice, but she firmly explained before the test that this test is for people who faint. She didn’t know why I’m having the test. There was a student (I think she was) in the room to observe the test, and Nurse kept explaining to her it is a boring test so that nobody is interested in the test (as career consideration) in a nice way. Dr PW was in the room, but mainly making and taking phone calls. They kindly turned the room light off for my photophobia.
Nurse explained the procedure of the test. She will check my blood pressure and pulse while I’m in supine position. Then, she will raise the table to 70°. At the bottom of the table, there is a metal stand that I will be standing on it. After 15 minutes, she will administer Sublingual Nitrate to provoke vasovagal activation. She also warned me the straps are not strong enough, so they could break if I lean on it. She attached 2 ECG codes on me. It could have been 4, but I cannot remember. (Bad brain fog.)
Then, it started. While I was in supine position, blood pressure was checked manually.
Mentally, I was very calm. I’ve collapsed in public too many times, so I don’t emotionally respond to the incident anymore. I don’t have fear for collapsing. It just happens. When I cannot avoid it, Tilt Table Test is the safest environment to collapse because I have medical staff right there to help me.
I wasn’t sure how my body was doing. It has already pushed beyond its limitation from just being there during my non-functioning hour. I was rather surprised it was coping so well so far, except for the occasional twitching. Nurse asked if shake (twitch) was my common symptom. I replied yes.
Table was raised manually. 70° felt very upright to me. I felt my muscles were tense and tight. I couldn’t make them relax. She checked blood pressure again.
While waiting for the next blood pressure check, she explained to the student how people faint at the test. I realised that the test is all about fainting/syncope for her, not about orthostatic intolerance. As usual, I closed my eyes to preserve energy. Eventually, it became an effort to keep my eyes open.
My muscles were still tense. Dr PW checked my pulse and checked how I was coping. I wasn’t sure how I was doing. Tense muscles kept me standing, but fatigue was getting stronger, my knees were getting weaker, and light-headedness was getting heavier.
At around 15 minutes mark, Nurse also asked how I was and if I wanted proceed to Sublingual Nitrate. I was getting weaker, but I wasn’t going to faint. So, I asked to proceed to Sublingual Nitrate. I was hoping that Tilt Table Test would give me some explanation about my disabling symptom.
She sprayed the Nitrate under my tongue. It had strong minty taste. For a moment, nothing happened. Suddenly, warm tingling sensation spread to upper half chest, and weakness followed. Then, the weakness spread very slowly to my feet like water was being absorbed by paper towel slowly. My body slowly started collapsing and was slowly sliding sideways.
Then, the deterioration accelerated. I started having difficulty breathing. I was suffocating. I had athenia , lost muscle tone or strength completely. Just before I got into distress mode, I glanced at ECG monitor and pulse was going at 121 – 122. I thought I passed the criteria for Postural Orthostatic Tachycardia Syndrome (POTS).
Dr PW stopped the test when I couldn’t keep standing anymore. Nurse manually put the table back to horizontal. I was paralysed for a while. Nurse took the last blood pressure. They allowed me to rest on the table until I got some strength back.
The only thing I was thinking was that I didn’t faint. My vision was blacked out, but I remained conscious.
When I could sit up on the table, Dr PW explained that the test result was negative. While explaining, he maintained eye contact with me. I was deeply confused, but didn’t have enough cognitive function to ask any question. He explained that Tilt Table Test has its own flaw and it’s accuracy is about 80%, therefore, he would say it was 80% negative. I was deeply confused and didn’t know what to think.
He didn’t give diagnosis. However, for my surprise, he reluctantly asked if I wanted to try Fludrocortisone to see if it helps. He doesn’t think it would help, but probably would give oedema. I’m desperate for any possible treatment, so I wouldn’t miss any opportunity to try anything. I said I would like to give it a try and see what happens. If it doesn’t help, I can always stop it. To me, it is better to know than keep wondering what if. My body often reacts strangely to medicine so I really don’t know until I give it a try.
He asked if drinking 2 litre of water was helping. I shock my head. Extra water I drink goes straight down in toilet as soon as I stand up. It doesn’t stay in blood vessel, so it doesn’t help.
He asked how often I see my treating doctor. I’m new to my treating doctor, so I don’t have routine yet. But, I was going to make an appointment soon, maybe in 2 weeks time. It could be my imagination, but I sensed Dr PW’s relief. My treating doctor with good understanding of ME and experience with treating many ME patients could explain something that Dr PW cannot see.
Nurse looked after me very well. She gave me a cup of water. She helped me to get off from the high table and asked what condition I’m suffering from. I explained it’s ME and it’s a very complicated and confusing condition. I couldn’t tell if she knew about it or not. If she didn’t, I have a feeling that she would look it up. Then, she pushed me in wheelchair back to the waiting room.
I asked if I could have a copy of test record. She thought about it for a moment, then asked the receptionist for me to give me a report. I realised they don’t give the actual test record. The receptionist would post the report to me.
As Nurse was leaving the clinic, she sincerely wished me all the best. At this point, I had lost my voice and my “thank you” was silent.
I ended up waiting for the driver for more than 2 hours in my wheelchair. I wiggled around and tried to get as horizontal as possible in the wheelchair. I was getting more and more exhausted. I couldn’t make myself comfortable, and I just wanted to lie down. Traffic was very bad on the way to the clinic. I guess it was the combination of bad timing and bad traffic that it took so long for the driver to pick me up. At about an hour waiting, the concerned receptionist offered water or tea. It sounded nice, but I didn’t feel I was strong enough to hold a cup. When the driver finally arrived, I was like a zombie. I think the receptionist was equally relieved as I was. I remained like a zombie all the way back home. My mind was consumed by the deep confusion of Tilt Table Test result.
Despite it was a very hot day, I was feeling icy cold and couldn’t make myself warm. I had to use electric blanket to warm myself. As soon as I lie down in my bed, I crashed. While feeling vertigo, I drifted into sleep for a few hours. I woke up feeling burning hot blanket against my leg.
I couldn’t stop thinking about the test result. At the Tilt Table Test, my pulse was going faster than when I had the Cardiac Perfusion Persantin Thallium Scan , which was a type of exercise stress test by using chemical injection and weight lifting to make my heart goes fast. My pulse hardly made 110 at this particular stress test. I saw my pulse was going over 120 at the Tilt Table Test, which I believed to be criteria for POTS.
When I received the copy of the report that was addressed to my treating doctor, my confusion remained. It explained I showed normal POTS reaction, but he thought it wasn’t significant enough. Blood pressure was much higher than my average at home, even when I was in supine position. It remained high through out the test, and only dropped a little after Sublingual Nitrate. It seemed to be the main reason I didn’t get POTS diagnosis.
As a lay person, the only explanation I can come up with for the high blood pressure at the test was because of adrenaline surge. To be honest, my body couldn’t cope with the trip without the help of adrenaline.
I felt it was nice that Dr PW didn’t deny I have Orthostatic Intolerance. Instead, he reported he couldn’t identify the cause of it.
Since Dr PW explained he is not an expert in Orthostatic Intolerance at the first meeting, I felt his report was reasonable. He provided a service that I needed. And I’m grateful that he gave me the opportunity to try Fludrocortisone.
I made an appointment with my treating doctor in November. I hope he could get me out from this deep confusion.
Some of useful articles to understand Orthostatic Intolerance.
Chronic Orthostatic Intolerance | Centre For Hypotention
Be the first to like this.