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Jackie's Story

25th July 2018

I was totally unaware that my life would change significantly from that day onwards.

Living with (this condition) “PPPD” would have a huge impact not only on myself, but also my husband, friends, and relatives.

I would no longer be able to work – we would have to move from our home of 14 years –

I would have to give up driving – things I took for granted would now become extremely challenging. I would experience a “rollercoaster ride” of emotions with both physical and psychological implications, most of which I was unfamiliar with but would have to learn to manage.

I was “housebound” for 3 months spending the majority of time in bed. Only out when driven to medical appointments. Chronic headaches, blurred vision & dizziness never left me. Due to extreme nausea, I lost 2 stones in weight, my legs were very weak, I staggered about & felt absolutely exhausted. Furniture walking & using my husband for support was the only way I could mobilise. It became “normal” for me to shower once a week. I felt embarrassed and humiliated about this because I had always made an effort with my appearance.

GP tried in vain to identify what these symptoms presented. 

Numerous blood tests disclosed “no abnormalities.” 

Opticians’ appointment investigating extremely “blurred” vision – outcome – prescribed varifocals. This didn’t make sense, I had just seen an optician 6 weeks before these symptoms came on – no change with reading glasses, return in 2 years. I declined the recommendation for varifocals, personally I believed my vision had changed in relation to whatever medical condition I was currently living with.

Prescribed anti-sickness tablets for vertigo – no improvement. 

“Well-being” provided OT equipment to aid me at home. 

Referred to Audio (normal results) & ENT (BPPV suspected – consultant performed Epley & Semont manoeuvres) – exacerbated condition.

Referred to Physiotherapist who ran a “balance clinic.” He immediately diagnosed the symptoms I presented as PPPD. Instantly I felt relieved/a weight off my mind even although I had never heard of this condition. Obviously, I had been quite worried and frightened not knowing what these symptoms were related to. The physio assured me that I did not have a life-threatening illness/condition. He claimed, “I would feel extreme nausea, but never be sick” and mobility-wise with relation to PPPD “I would NOT fall over but have some near misses” To this day I have held onto these words – never been physically sick or fallen over. I felt very hopeful that there was now a way forward.

(Signposted to links for numerous articles/research relating to PPPD.) My husband and friends kindly read some of the articles to me since this was something that caused extreme nausea and dizziness. They commented that the symptoms I presented “ticked” the majority of ones listed. Once diagnosed with PPPD I have always believed/accepted that I had this condition. (4 years on from then the 3rd Neurologist I was referred to would ask me what percentage I believed I had PPPD – to which I answered 99.9%. I did wonder if this was a trick question! He commented that if a patient believed and accepted that they had a condition it would be easier to work with them advising various “coping mechanisms” to help control the condition and make some progress no matter how small.)

Slight improvements noted after working with physio over a couple of months then suddenly without any logical explanation the symptoms exacerbated. Advised to stop sessions and “try to do things at home.” My hopes were dashed, my heart sank. 

Once again, I felt abandoned, confused, in many ways frustrated even although I knew I had fully committed to the therapy programme. 

Referred for Chest X-ray & CT scan – both normal. 

Prescribed Betahistine & Dihydrochloride – advised to stop. 

Nortriptyline – exacerbated symptoms – advised to stop.

April 2019 

Referred to Neurologist. 

Prescribed Beta Blockers – Raynauds condition worsened – advised to stop.

MRI & IAM’s Scans – nothing identified.

Prescribed Inderal – advised to stop.

Feeling so desperate I had willingly taken the medication various health professionals had prescribed. Something had to make a difference!

No improvements – Neurologist closed case several months later.

Devastated- Why couldn’t anyone help me? In limbo once again.

I lost confidence in myself and “medical professionals” – I felt there was no way forward…. Surely, I wasn’t the only person living with PPPD. 

Moping around feeling sorry for myself wouldn’t help anyone especially me. Thankfully I found an inner strength to fight on for answers and find the help I needed to give me my life back.

Told myself to turn “frustration” into “motivation”.

November 2019

Decision made that we had to move house – too isolated especially now I was unable to drive or walk very far. I used to religiously walk about 20 miles per week.

New GP – reported unfamiliar with PPPD. 

Referred to Psychologist – declined due to being unfamiliar with condition. 

(At least some medical professionals were admitting they were unfamiliar with PPPD)

During Lockdown – Referral to 2nd Neurologist – One Zoom session – up to date discussion/ asked to demonstrate walking backwards & forwards – reported I displayed “nothing wrong” with me & closed the case!

Referred to Psychiatrist who very quickly said “Jackie you are not mad!”  Neither of us could understand his involvement. A few zoom sessions then case closed – NFA.

Last words were “don’t hesitate to contact me if there is anything I can help with.” I held him to his word. Months passed – still getting nowhere fast – case reopened. 

We discussed the articles published researching into PPPD. 

Psychiatrist advised I initially work for 3 months with a local OT specialising in CBT. If no improvements made, a referral to another neurologist could be sanctioned. We both committed to working through modules etc, but I was really having to educate the OT about PPPD. No improvements were made. On a positive note, I became aware of a “coping mechanism” I had adopted for self-preservation – closing one or both eyes a great deal.

Opticians’ appointment – saw bars moving – “Torsional Rotation” reported.

I have seen some very “strange” things. Once the top of the Christmas tree bent over. Roads often appear to rise up in front of the car & the iPad screen rapidly pulsates. 

Very scary because the images are so real.

Post – Lockdown really had a negative affected me. Being “sheltered” for all that time away from “visual stimulation” exacerbated my symptoms and any slight improvements appeared to have been erased/wiped out. I felt I was back to square one.

4 years on…finally referral made.

I had always believed this Neurologist would be “the light at the end of my tunnel”, but admittedly I was a bit concerned that he was probably my “last resort.”

First consultation confirmed the diagnosis as PPPD. 

“My wiring was all in working order but not going to the correct connections”. 

Tingling/numbness in my face & lips – vestibular migraine.

Prescription for Sertraline suggested – often helped with dizziness – gradually building up the dosage until tolerable, then in time coming off the medication.

I could have cried/hugged him – utterly relieved there was at last an explanation for what I was experiencing. 

He said he wasn’t the “Wizard of Oz” & couldn’t fix everyone and that he was just an “ordinary man.” 

I replied “he might be the ordinary man that gives me my life back”.

Various research links shared. Really inspired by one particular video entitled “How am I running when I can’t walk?” Over several months this lady demonstrated huge progress – then so could I.

I had learnt to laugh about the “crazy” way I walk. Strong tendency to “uncontrollably“ veer left (causing ankle discomfort) & even to walk backwards for no apparent reason.

I named this ”Jelly Legs” a friendlier more acceptable term than “Functional Gait Disorder” – maybe one of my own coping mechanisms that helped me feel more comfortable within my own body & not so self-conscious out in public.

Recommended that I contact a Physiotherapist – specialist field – using CBT in conjunction with PPPD. I really put my heart & soul into getting some positive results. 

PPPD was not going to make me a prisoner within my own body or my home.

I keep a diary & videos of myself to reflect on progress, setbacks & outcomes.

“Yes” – it’s true I can run better than walk. “Singing” to myself or aloud really works -helps my brain focus on something other than dizziness. (Favourite songs: “walk this way – talk this way…” & “I’m coming out – I want the world to know…” “Jelly legs” doesn’t visit so often now.

“Yes” – I struggle with “fatigue”. Sleep on average 11 hours at night. Not too concerned because now I’m managing to be a bit more active both physically and mentally throughout most days. I pace myself.

“Yes” – reading, writing, using iPad & watching TV are still “works in progress”.

An author friend recently published a “talking book” so I could experience her novel – how thoughtful.

“Yes”- I now manage short train/bus journeys (when accompanied) & can enjoy travelling as a passenger in a car for longer. Even had a few nights away.

I have driven up/down our drive – feels amazing but am still unsure about venturing out on the open road. Never say never.

“Yes”- I can go into a small supermarket by myself for a few items – (main shopping delivered weekly) I have used an escalator & lift – briefly stagger. 

“Yes”- I help with gardening. Strangely enough I manage to use a Hover Mower – aptly named ‘Tufty’ – I leave a lot of those along with wiggly Mohicans! Gives me a real ‘Buzz’ just doing this myself. Really stagger using a wheelbarrow or wheeled mower – very bizarre. 

“Yes” – I still ask my husband for assistance with many things around the house. I do my best.

“Yes” – I have “relapses” – sometimes able to identify a “trigger” other times maybe a “cumulative” effect. All learning experiences.

“Yes”- I have a go at most things. Recently I played putting & got a “hole in one” – much better overall score than I used to get many years ago.

4 Zoom sessions over a few months – I was coming up with practical ideas to progress without further guidance.

The brain is a very powerful and mysterious organ – you can retrain it.

Build up a better understanding of PPPD – believe in yourself (even when experiencing setbacks) – have realistic goals & reward accomplishments no matter how small. Bite size pieces, so in time, we can better conquer our individual expectations.  

Be as open as you can – don’t hesitate to ask for help. Don’t give up.

I’m really content with life, friends say I’m “glowing” – so proud having accomplished great results so far with many more to come/ explore.

I’m very appreciative of support/encouragement from people I know.

Areas I feel that have “plateaued out” are excitedly “works in progress”.

This is not The End ……………… but The Beginning of my journey.