EnableMe | enableme - stroke recovery and support

This is my stroke story – has anyone found a pain medication that does not put on weight but is effective. Knowing the debilitating and horrendous symptoms other stroke patients have suffered, I feel like I’m being a whinger as in the larger scheme of things my symptoms seem minor. Prior to stroke I had an ongoing headache for 9 weeks.

Had CT Scan around 15.03.2024 – showed nothing, Massage , acupuncture, eye tests, test for glaucoma all negative

Thursday 28th March 2024 - 2.45pm - my left bottom lip went numb and tingly, then my left side of my tongue did the same. Felt like I had been given novocain.

3.00pm – my left arm, hand and fingers are numb,

3.30 pm - left leg now pins and needles and numb

4.43pm – called ambulance – I was only category 1 on stroke list but they took me in anyway

6.00pm Taken for CT Scan – was told I didn’t have a stroke and they didn’t know what was wrong with me

7.00pm –- still numb and pins and needles, they gave me a soluble aspirin

8.15pm my left breast, chest abdominal area also went numb and the side ribs felt like they are constricted when I deep breathe. The Doc came did all the same tests again, muscle strength movements all good. Just the whole left side numbness.

Friday, 29th March 2024 - stroke Physician came this morning along with Registrar 1 first year trainee of advanced Neurology. More movement test, a little walk, Dr RD was annoyed with me and asked why I was holding my arm strangely, snapped at me and told me to walk swinging my arm properly said CT scan showed nothing, heart monitor all ok, BP gets a bit high, another 24 hours on heart monitor, MRI tomorrow. If it shows nothing, I'm home, Doctor RD said - best they can figure is that they might never know what the issue is best to follow up GP. This numbness is really annoying, but I can walk and talk.

Doctor RD has said No to blood test when I asked re test and also viral blood test told me not to listen to my uninformed friends and google, to listen to him –I didn’t say what I was thinking, since he wasn’t saying anything that was helpful, I’m not inclined to listen to him

Saturday 30th March 2024 - MRI results show I have had a TIA causing somatosensory deficit characterized as an absence, decrease, or distortion relative to normal sensory sensation, I.e. numbness along the complete left side of my body, face etc.

Doctors opinion is that it will clear up over time, as the brain can supposedly heal itself, but it might or might not. Doctor RD is very dismissive and not at all helpful, said I will have heart tests as outpatient, they will contact me eventually. His offsider hung back to explain things a bit better, a very kind supportive person. I feel like I have been injected with novocaine down the whole left side. Motor function is good, walking talking all fine. My hand is annoying as I cant feel to grip or hold anything

Sunday 7 April 2024 – I have feeling back in my tongue – all left side still the same, my leg feels trembly when I walk and tight, my arm shoulder to elbow – heavy and really tight like pressure wrapped, ribs tight

Wednesday 10 April 2024 – left side still numb, ribs, chest tight with deep breaths. Left arm any movement causes electric shocks, hand – I don’t trust it to hold things. Did go to work for 3 hours to do invoicing and books to send to accountant – so brain still works – Left arm, hand painful after using it to type. very sensitive, had sensory overload for next 8 hours. Talking is annoying, I feel like I’m drooling from left side of mouth.

14 May 2024 7 weeks post stroke. – left side still numb, ribs, chest tight with deep breaths.

Left arm any movement causes electric shocks, hand extremely painful, feels like it is in an ice bath. I have now been on Lyrica for 5 days – 1 per night – no relief at all. Told to increase to 2 a day one in morning one at night for 7 days and see how that goes.

Left leg has slight weakness when I walk for over 5 minutes, it’s trembly and doesn’t feel strong, sort of wobbly and weak.

Thursday 16 May 2024 7 weeks post stroke and my birthday. Woke up with left arm very heavy and tight all over, my left leg now feels very heavy to walk and both have feelings of numbness to an increased level. Left hand is still quite mobile and I have good motor skills, although it feels very tight, pins and needles and cold as if I have slept funny and cut off the circulation.

Friday 5 July 2024 – Appointment CBH Neurology Clinic – I thought I would see Doctor RD, but I saw Dr JM who is the advanced trainee. We went through the symptoms and the subsequent pain from them. He went through a few medications that all have different side effects, it’s like ‘pick your poison’. He went out to confer with Doctor RD came back ad prescribed APO Sodium Valproate, advised to keep taking the Lyrica morning 75mg and night cut to 75mg from 150 and 200mg Sodium Valproate at night for a few weeks, then cut the nighttime Lyrica

Sunday 4 August symptoms still the same, despite taking Sodium Valproate. I’ve gained weight and reading up on it, it can damage and affect the pancreas, as a type 2 diabetic I think the CBH stroke doctor, Doctor RD is wrong again. No faith in this person whatsoever. There has been no discernible difference in the pain levels so I have decided to stop taking both the Sodium Valproate and the Lyrica.

27 September 2024. Six months today since my stroke, Symptoms are more or less the same. The inside of my mouth on left side feels enlarged, still numb, tingling weird feeling on all left side. Left hand is still somewhat painful but I think the meds have taken the edge off a bit, still doing a Micheal Jackson and wearing my glove. The hand and arm feel quite tight and feels like my skin is too small. Under arm and side of body feels swollen and when I walk the contact between arm and side is very annoying. Chest and ribs still feel very tight and restricted when I breathe in deeply. Each step causes pins and needles down my entire leg. My left eye alternates between feeling dry and irritated and streaming tears, and it aches – that’s a new symptom. The left side of my face is very susceptible to the cold and I often have to put my hand over it to stop it hurting/aching. I know I love new things….but not new symptoms. Anyway all in all the “new” me irritates the hell out of me, they, being my not so learned medical advisers from the Base Neurology department said they hoped my brain would eventually repair it’s self, I guess mine is a tad slow, and they’d have to say that because quite frankly they know Jack Shit.

28 November 2024. Eight months since stroke. All symptoms till the same down the left side. My face is more annoying than ever, I’m usually chatty and smiley, but talking is irritating to my mouth, particularly the inside of the bottom lip, my eye area just feel weird, the skin under my eye feels tight an heaven forbid I should frown, that hurts. My meds have changed, no more Lyica or 200mg Sodium Valproate, I do not need help putting on weight. Now on *Dulxetine EC 60mg - depression/nerve pain a.m.and *Gabapentin 100 (Neurontin 100mg) 300mg x 3 daily - Nerve pain

16 April 2025 - One year + post stroke.

L Forehead - tight – tighter on side and temple area- uncomfortable to frown
L Eye socket – aches , by end of day really annoying and feel like I have to cover it, 11am more pronounced irritation under eye
L cheek and side of nose – I know it’s there feels heavy
L Inside mouth & lips – irritating to talk
L throat – just numb
L arm – very heavy and tight, forearm aches and tight feel like there is a lump below inner elbow
L hand – constant pain, tightness, prickles, feels like my skin is too tight, feels like my skin is going to split, index and ring finger get spasticity and get a bit ‘tangled’
L chest and ribs – feel constricted to breathe deeply
L leg – numb, pins and needles – full length of leg, knee pain – but I think that’s unrelated. If I walk for a while I have to stop and let my leg decide it remembers how to walk, lose balance, walk sideways
L foot – numb – under pad
Mind, forget what things are called – even names of people I know well. fogginess. I know I am impatient and want it all to be better. Guess I'm just having a pity party