My Journey With PoTS

Hi all, I hope you're all grand 💙

In this blog I want to write about the journey which led to my diagnosis and the doctors I spoke to along the way.

Please note: I am in no way a medical professional and what I speak about is my own journey with my illnesses. If you want more professional information regarding PoTS please visit PoTS UK webpage.

In March 2020, I ended up getting Glandular Fever that wiped me out. For about 4 months I barely got out of bed, barely showered, didn't eat and needed all the help I could get from my partner and mum to just live a normal day to day life.

My symptoms are:

Dizziness

Light-headedness

Nausea

Visual Snow Syndrome (VSS)

Lack of appetite

Brain fog

Slow reactiveness

Bad depth perception (e.g. I would see the glass near me in the center but it would actually be to the left)

Off balance

Slow brain reactions

Poor breathing (gasping for air)

Exhaustion

Fatigue

Sleeping 15-20 hours a day

Extremely high heart rate

Blurriness to vision

Pulsating tinnitus

Anxiety

I rang my GP multiple times throughout this time and was told that I will be fine and just have to rest and wait for it to pass. When August 2020 hit, I was at my lowest, I was on sick leave still, wasn't leaving the house at all and looked like a completely different person. I was struggling to just live each day bit by bit. At this point I rang my GP again and stated that I was no better, in fact getting worse more than anything. I was then brought in for blood tests but nothing showed up, apart from low Vitamin D levels but nothing much at all.

In late September 2020, I then pretty much begged my GP for help. They sent me down the route of a neurologist.

Below I will split my experiences with all doctors interactions so it's easier to read if you feel one may be right for you. Please note a lot of these visits overlap so dates may seem weird:

NHS neurologist:

In December 2020 I had an over the phone call with the neurologist. He asked me multiple questions about my health and then asked me to do various excercises, like touching my nose with my index finger, walking in a straight line, closing my eyes and standing on the spot to see what my balance was like, and so on. After this he suggested I have a head MRI. In Feb 2021, I was very fortunate to get a MRi appointment which went all okay. In May 2021, I finally had a face to face with the neurologist and he showed me my MRIs. He stated nothing was wrong with them, only thing was that my hormonal gland was slightly larger than the average. I was in and out within 10 minutes. I was so desperate for something to happen as I was still no where near getting better and my mental health was at an all time low. He did state that he would refer me to the NHS physio but still to this day I have had no referral.

Private Body Alignment Physio:

In January 2021, after doing a little bit of research with my mum, we thought maybe I had a spinal alignment issue that was causing me to be unbalanced and dizzy. I was in her appointment for an hour and she was incredibly kind and thoughtful. She felt various bones and asked me to do multiple balance excercises. She concluded that there was something definitely wrong but not with regards to any alignment. She said that hopefully the head MRI reffered by my NHS neurologist should show something or at least conclude what was wrong. So sadly this was another dead end.

Private ENT doctor:

My mum and I then thought maybe I had an ear balance problem and due to my pulsating tinnitus also maybe an ENT doctor will have the answer. I went to him in August 2021 and he told me to walk in a line and back, which I struggled to do, and to close my eyes and stay in the one spot, which I also struggled to do. He then cleaned my ears of wax and checked my eardrums. He concluded that there was nothing wrong with my ears and that this was not the problem. He then continued to say that he believes it may be all in my head and that I should just wait it out. I know right... the cheek of it!! This definitely destroyed my mental health as I was starting to question myself if I was making it all up. At this point I started working from home and started therapy sessions but the therapy sessions really weren't doing anything apart from me repeating the same thing over and over again about my health. At this stage I was so determined to really find what was wrong with me.

GPs:

At this point I kept going back to my GP every month and doing mutliple blood tests again and again but nothing was showing. Around Feb 2022, they finally tell me "Oh we haven't actually done the specialised fatigue ones"... I think you can tell by then how angry I was at this! All this time waiting! Anyhow I got them done and they stated that a few of the levels were low but to take some vitamins. They didn't really tell me anything else and were very vague.

Around January 2022 I ended up coming across Visual Snow Syndrome (VSS) and finding a lot of the symptoms were similar to mine. Interestingly I have had VSS for most of my life and only came across it because I searched "TV static eyesight". This then led me to find a VSS specialist. Sadly these people are very hard to come across so the waiting list was long for the private appointments. I fortunately got an appointment in July 2022 and I finally found the answer to all! (Well it felt like it to me anyhow 🥹) He was the first doctor who finally told me I wasn't crazy or making it all up. He listened to everything I had to say and said he'd get me into his NHS appointments. He told me to try a few vitamins that has helped some people with VSS while I waited for the NHS appointment. This is where it then leads onto PoTS.

PoTS:

I went back to the VSS doctor in September 2022 and after telling him I didn't feel any better, his face had this concluding look on it. It was as if a checkbox was ticked in his head. He then tested my heart rate over 20 minutes (first 10 lying down and then the next 10 standing up) and he took my blood pressure over 10 minutes. He then told me I had PoTS and explained everything to me. He said he would get me in for a 'Tilt Table Test' in NHS. Within the next month my anxiety dropped and I felt such a huge relief. I WASN'T INSANE! I actually had a diagnosis! As the NHS waiting times are so long I decided to go to see a PoTS specialist privately in October 2022. When I went to see him, he did the same heart rate and blood pressure tests and then said I would have to do PoTS bloodtests and a 24 Hour Urine test for electrolytes. I then went away and got these done. My GP said that my blood tests were fine. Unfortunately the urine test took me a while to do due to the time trying to get to the hospital and the costing of it all. I ended up doing the urine test in Feb 2023. The results concluded from this test showed I had PoTS of some description and a tilt table test was definitely the next step.

I then went back to my VSS doctor in March 2023 to try and get reffered through NHS for the tilt table test.

After ALL that, I finally have somewhat of an answer but I am still waiting for the tilt table test. This test will help conclude what type of PoTS I have and what medication I will need to take. I will keep you updated about the tilt table test and will then write a blog about the experience.

Unfortunately for a lot of PoTS patients the journey is very long with a lot of dead ends and people telling you what to do when you think otherwise.

All I can say is please hold on! Keep fighting for what you believe and if you hit a dead end, take a step back, breath and find the next road to take. It is such a hard journey with a lot of judgement with it but YOU know YOUR OWN BODY! You keep going till you find the person who will stop and listen and tell you you're not insane.

I hope at least that this blog can help shorten your journey or at least help you understand the thought process I had and how I came to this diagnosis.

If you have any questions at all please feel free to contact me. I'm always happy to help in anyway or even just have a natter about it all.

Thanks for the read! Till next time...