The dreaded Tilt Table Test & a POTS diagnosis

Since January this year, I’ve been searching for a diagnosis for my new symptoms including dizziness, extreme fatigue, tachycardia, inability to concentrate, insomnia and so on. I’ve been to see an array of different consultants – a pain consultant, chest physician, rheumatologist and a neurologist, and had many many tests, to try and get to the bottom of why my life has changed so dramatically. As it stands, I still have suspected chronic Lyme Disease but I am waiting to have some blood sent to Germany to confirm whether or not I have it for definite. Recently though, I’ve been really concerned about my heart rate and arrhythmias, and wanted to find some way of managing it for the time being. I’ve met some lovely fellow chronic illnesses sufferers (virtually) and read many blogs, and came across POTS (Postural Orthostatic Tachycardia Syndrome – An abnormal response by the autonomic nervous system to becoming upright; there is an abnormally high increase in heart rate and altered blood supply to the brain on standing which results in a large number of symptoms). I’d never heard of it before so looked it up and I was surprised to see that the symptoms sounded very similar to mine. I found out that POTS is sometimes a symptom is Lyme disease or it has other causes such as trauma and infections.

Symptoms of POTS

Symptoms of POTS

I was almost immediately convinced I had it even though it had never been suggested to me before by any of the aforementioned specialists. Not even my pain consultant who is very thorough and was the one who suggested Lyme. So a few weeks ago, in a follow up appointment with my pain consultant (who is pretty much my GP as I see him so regularly and manages my care)’ I asked to see a POTS specialist. He immediately referred me to a specialist in autonomic dysfunction who I saw the following week.

And what a lovely man he is, so warm and funny – he immediately put me at ease and was willing to answer all of my questions. You don’t find many consultants like that trust me! We spoke about all of my symptoms and he took my heart rate and blood pressure lying down on a bed and then the same standing up. He said he was quietly confident I had POTS, and that if so he would be able to improve my quality of life with medication! What?!? He might actually be able to help me!? Me being skeptical, due years of being given false hope when trying to find a diagnosis of my chronic pain condition, didn’t jump for joy, but instead actually felt slightly hopeful for once.

To prove his theory I had to have the dreaded Tilt Table test done yesterday! On the few days leading up to it, the anxiety built up and up. The more I read about the procedure on the internet and on others blogs, the more worked up I became. I got upset numerous times the day before, terrified the test would make me even more ill and set me back further. After all, it’s a standing test and I never stand for more than a couple of minutes at a time due to exhaustion, dizziness, breathlessness and feeling faint. I even got Mum to try and rearrange it for a few weeks time but it was a cancellation appointment and if I didn’t take it, I’d have to wait until September?!

Due to the anxiety and stress of that and other things, I was really poorly even before I arrived for the test. The nurse was so lovely though and explained everything that was going to happen and listened to my concerns. She got me to lie down on a bed and she attached a heart rate monitor to my finger and a blood pressure monitor to one of my arms. She also put two big straps across my legs to keep me secure incase of fainting, and my feet were pressed against a foot plate. I had a rest for a good ten minutes led there before my consultant came in and started the test. The bed was raised slowly to a 70 degree angle and then stopped, it felt like I was standing with a slight lean back. Boy, it was wasn’t comfortable or pleasant. Immediately I could feel my heart racing and pounding at my chest. I quickly became very hot and lightheaded, and because of the straps pressing against my legs and because I was putting weight through them, the pain in them soared. In fact the pain in my legs was the worst part. Even on a good day, before I became ill in January, I could only really stand/walk for about ten minutes. So being stood for much longer was pretty painful! I had to get her to losen the straps after a while which did ease it ever so slightly as I could wiggle them around a little and bend my knees.

What happens during a Table Tilt Test

What happens during a Table Tilt Test

I was up there in total for about 20-25 minutes. It felt like longer as there was barely any talking as talking is a stimulus, I had to just stare at blank walls. My consultant did ask me how I was feeling a couple of times though which was nice. We had a chat once it had all finished and I’d had a little rest. He told me that the test absolutely confirmed his suspicions, I have POTS! My heart rate went from 85-90 beats per minute at rest to 154 bpm upright! No wonder I was so woosey up there. He also said my feet went purple – another classic POTS sign. So there you go, I actually self diagnosed! If I hadn’t suggested it to my pain consultant who knows whether POTS would be suspected at a later date.

After the test I was so tired. Mum wheeled me back to the car and Dad drove me home. I don’t know whether it’s set me back further, because I already did that with all the stress before hand, but I am going to need rest, rest and more rest for the next week or so! As for having POTS I don’t really know how to feel about it. I am feeling really upset that I’ve just been officially diagnosed with another chronic condition on top of chronic pain, and I have to learn to manage more complex symptoms. But I am also feeling hopeful that there are medications out there than might be able to help improve my quality of life somewhat. And that’s a nice feeling :) I still have so many more questions, like what caused me to have POTS? Was it Lyme or something else? Will I get back to some degree of normality one day? Etc etc. Hopefully some of those will be answered soon and I will keep you posted. But for now … ZZZzzzzzzzzzzzzzzz…. REST!!




    • spooniesophia July 3, 2014 / 4:25 pm

      Dizziness, especially on standing or in loud, crowded places, lightheaded, racing heart rate which worsens significantly from lying to standing, extreme fatigue, migraines, sweating and anxiety.

      • rominalifehappens July 3, 2014 / 5:04 pm

        Thanks! Do you only get this why standing still or walking as well?

        • spooniesophia July 3, 2014 / 5:08 pm

          I get it 24 hours a day :( Lying down, sitting and standing and walking. But symptoms are at their worst when standing and walking which I don’t do much of at all. I can only stand for a few minutes at a time. Xx

          • rominalifehappens July 3, 2014 / 5:09 pm

            I wish you the best of luck with everything Sophia. I have lyme too and I feel worst when standing still (because my legs feel heavy) but I can walk and stand but not like I used to. Getting a tilt test at of the month.

          • spooniesophia July 3, 2014 / 5:12 pm

            Thank you so much :) it’s so nice to have a diagnosis at last! do let me know how you get on with the Tilt Table test! Hope it goes well, and I wish you lots of luck too xx

          • rominalifehappens July 3, 2014 / 5:14 pm

            Thank you, I will! Happy 4th of July tomorrow!

  1. Hayley-Eszti July 4, 2014 / 1:16 am

    I’m sorry you have POTS, but the good thing is you now have some answers and you can begin trying to manage the symptoms. The TTT is so horrible but they do look after you. Get plenty of rest now. In my house if I ever make a cuppa, my Mum sings potsy put the kettle on we’ll all have tea – instead of Polly – what a nutter!
    Lots of hugs!

    • spooniesophia July 4, 2014 / 9:36 pm

      Yes absolutely Hayley, knowledge is power and all that. Just praying the meds help a little with the symptoms. Don’t worry been resting lots, and will be doing be same all weekend! Haha I had that song in my head all this morning when I read your comment 😀 hope you’re ok xxxx

  2. lennae87 July 4, 2014 / 9:51 am

    That tilt test sounds horrid! At least you know that you have Pots and can try and move forward. I don’t no much about Pots, but hopefully there are better days ahead for you! Rest up, much love xxx

    • spooniesophia July 4, 2014 / 10:08 pm

      Thank you Lennae, I really hope so too! I’ve started on beta blockers, really hope they make things slightly easier. I will do and thanks again :) xxx

  3. AddieMarie July 4, 2014 / 2:21 pm

    I recently had a tilt table test too, it was AWFUL! Top of the list of most uncomfortable tests I’ve ever had, and that’s saying something! I only lasted 13 minutes before I passed out though, I think if I hadn’t passed out I wouldn’t have finished the test I was so uncomfortable. :/ And my feet were sooooooo purple! I have POTS too, but other issues going on as well that prevent me from being able to take the meds for it (beta blockers), so I will be having a pacemaker put in soon. I’m glad you have an answer now and I hope the meds help you!

    • spooniesophia July 4, 2014 / 10:05 pm

      It’s was one of my worst too, apart from the lumbar puncture – that was my worst! Sorry you passed out :( but glad you got a diagnosis out of it. That’s rubbish you cant take beta blockers, I really hope he pacemaker works for you though, fingers crossed! Xx

      • AddieMarie July 4, 2014 / 10:08 pm

        Yeah, it kind of stinks…but I think the pacemaker may be more helpful in the long run anyway since I have multiple issues going on. I was freaked at first but I’m pretty anxious to get it now since I’ve been feeling pretty rotten. Hopefully you get a good plan in place that will help you feel better! Salt, fluids and even sometimes IV saline is supposed to help POTS…so maybe read up on that and talk to your doctor.

  4. Jaye- Cardiff in a Tea Cup July 4, 2014 / 8:10 pm

    I self diagnosed my condition too. It’s good to read up on things although I know a lot of Drs don’t like it. It’s good you know you have POTS sure! I hope the new medication helps and that rest helps after the test. :-)

    • spooniesophia July 4, 2014 / 10:07 pm

      I swear we understand these illnesses better than the medical professionals do! Thank you, I hope so too! Thanks lovely :-)

  5. Tanya Marlow July 6, 2014 / 9:18 am

    Just came across your blog via Sarah Reed. I have ME, and I’ve just been diagnosed with POTS as well. I’m on ivabradine, and it really does seem to (so far) hae given me a boost, and my heart rate is no longer 130-150bpm when I stand – it’s 90!! I know you will know how weird it feels to write that. And I have lost all the vertigo I was feeling – it’s nice to not be on a ship eternally.

    I really hope this is the start of good things for you. Best wishes

    • spooniesophia July 8, 2014 / 10:35 am

      Hi Tanya! So pleased you have found something that’s really helped :) that’s really given me some hope, thank you! The vertigo is so debilitating, that must feel amazing to be rid of it :)
      Thanks, me too! best wishes to you too! Xxx

  6. sundreemz July 17, 2014 / 12:58 pm

    I’ve been told I possibly have POTS and just need to have the TTT done. I’m like you in that my hear skyrockets just on standing alone. I was put on Bystolic for the tachycardia and that has seemed to help. I have multiple issues as well, with my primary diagnosis as Med-Resistant Lupus. It took almost a year to get that diagnoses. But since 2011 I have increasingly gone down hill and they are still testing me for other conditions for symptoms that have been ignored for so long. I’m finally seeing a neurologist who is taking me seriously! It’s a never ending cycle of doctor appointments. Good luck with the new diagnosis!!

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