My name is Barbara and I am a recently retired behaviour therapist living in Australia.

My husband and I were looking forward to a bit of travelling and spending quality time with our grandchildren after working hard in our rewarding professions for many years. I was prescribed an paroxetine over 27 years ago for anxiety and never thought about coming off seriously until recently due to some noted side effects and the possibility of long term side effects such as dementia which have been highlighted in recent research.

Unfortunately my experience of tapering has been horrendous. I started tapering from 20mg in June last year cutting down by myself (I now know far too quickly ). For the first few months I appeared to be doing well and visited a functional medicine GP who advised me to miss doses. After a few weeks I stopped missing doses as I started to feel a bit odd and continued taking my daily amount of 10mg. Shortly after I developed upper back pain, severe sweating and a feeling that my body was under a lot of strain. After 4 weeks of this I was feeling quite unwell one evening so my husband suggested taking my blood pressure. Within minutes of taking it a few times it rose rapidly to 215/125 (usual blood pressure 110/70) and that’s when we decided to go to the hospital. Luckily the hospital was only 5 minutes away and when I arrived the triage nurse took my blood pressure and her face said it all, it had risen to 235 (a hypertensive crisis). A couple of minutes later I began to get severe frontal head pain which is when the nurse rushed me into the ER. I had 6 people working on me. I didn’t realise it was withdrawal at the time nor did the hospital. They admitted me and administered medication by IV to bring my blood pressure down and an antiemetic for nausea. During my stay they gave me sleeping tablets which they recommended as it was noisy in the ward.

Nothing much was found during investigations so I was sent home after a few days with blood thinners as a safety precaution because they found a tiny inconclusive dot on my lung but the doctor felt he was possibly over treating me as the results were inconclusive, they were clutching at straws…. On coming home I panicked and decided come of all my medications two antihistamines a progesterone tablet and I up dosed to my full dose of antidepressant (I was able to do this previously in a previous failed attempt at withdrawal, though again did not realise it was withdrawal at the time). A short time after this I started suffering from many debilitating neurological symptoms which included Akathisia an internal terror such as the like I have never experienced before, I was pretty much bed ridden and terrified probably for the first 4 weeks. I had head pain with electrical shock like tingling down my arms and through my spine overnight. Which I still have though it’s not quite as intense.

I went to see my GP (New) and he said it was anxiety from not being able to go on holiday (we had to cancel a trip) please… I said “no I feel it is the Antidepressant” and he disagreed but suggested cross tapering over to another in just 4 weeks, thankfully I declined. I did end up in hospital with another hypertensive crisis and the doctors after many tests could not work out why but did offer me a benzodiazepine which I unfortunately took on and off for 11 days as by that time the Akathisia had set in and I didn’t know what was wrong with me...

Luckily we eventually as a family did some research and put two and two together and worked out it was actually antidepressant withdrawal, the antidepressant up-dose and perhaps the drug cocktail I was given in hospital that was causing all these terrible symptoms.

On researching even more thoroughly we found many useful sites such as Surviving Antidepressants and managed to get an online academic appointment with Dr Mark Horowitz where we found out more information on the dangers of incorrect tapering. I held my dose for a bit and am now tapering to 18mg to see if it helps with the symptoms I have left such as daily head, eye, back, and shin pain, mild morning Akathisia, pin prick nerve pain all over the body and tinnitus that started in April this year before I started to taper down.

I do not know what future holds and am terrified of taking any more drugs in the future and have totally lost faith in the medical profession. However I am very fortunate my family have stood by me every inch of the way and have taken onboard that the antidepressant was to blame. Though in the beginning I am not sure what they thought, they were so confused and helpless. They have been through so much during this time seeing me so unwell especially in beginning when they felt helpless as there was no one they could find knowledgeable enough to help us. My poor beautiful kind husband has worked hard all his life and am sure he wasn’t expecting this in retirement, I feel so guilty that I am putting him through this and that his quality of life is now impaired as well. I was never informed of the adverse effects/withdrawal effects of any of the medications I have been given, not even in hospital. On a good note the chemical anxiety has improved which I am immensely grateful for.