Hello my name is Clodagh and I'm 54 yrs old. I had a pretty big stroke in my cerebellar in October 2018. I was misdiagnosed as having labyrinthitis and sent home from A&E .. at home and confined to my bed I had a second stroke which has effected my hearing and I now have tinnitus.
Again I was told by second ambulance crew that I had an ear infection..
I stayed at home in bed where I had a third stroke and I lost my swallow and had facial numbness..
This time when a third ambulance came my husband insisted on going back to A&E where I was left for 5 hours until at last I was seen by a wonderful consultant who actually saved my life.
so three days after the initial stroke at last I was scanned.
I spent a month in hospital recovering and having physio to learn to walk again.
I know the fast test has saved so many lives but it actually nearly wiped me out ... I was able to move arms and legs and speak .. no facial droop etc.
Doctors and paramedics are trained to look for the most common symptoms of stroke. I didn't fit in with my symptoms. I was extremely dizzy, vomiting constantly and my vision was up and down.
I am interested to know if anyone had the same experience and how you are doing now.
I am dizzy and have balance issues 24/7 . The deafness and tinnitus drives me crazy.
I can't help wonder if I was treated the first night would I still have my balance and hearing.
Hi Clodagh , young for stroke, I was 61 over a year ago ,on a short break looking around gardens of stately home, hottest day of year ? Felt sick & giddy, I thought poss heat stroke. Went back to Travel lodge, had to call my wife to get me out of bath & to bed ,stayed in bed three days .Wife drove us home ,in bed 2 days , didn't think stroke ,called ambulance, also didn't think stroke but took to a&e.
CERIBELLUM , stroke ! Over year on not much improvement, buying mobility scooter, fatigue just knocks me out, bed each day . Pleased not to have your problems though , have you seen any improvements ?
That is the most dreadful thing I have heard. You have my sympathy over and over. What a dreadful thing to have missed your symptoms it makes you lose faith but please try to be positive and things will get better I am sure. It will probably take time but you will have plenty of support in this forum. With very best wishes Norma.
what a terrible experience you went through.
A stroke got me in December 2015 and i thought things were improving over time.
A paramedic arrived in my village in two minutes and an ambulance five minutes later. There was no dashing to hospital, because stroking had been during my sleep so the four hour window had passed. But there were no delays and no waiting. Staff came out to meet the ambulance, i went to a dedicated stroke resus area, a junior nurse was allocated to me and she stayed by my side until i went to the stroke unit.
what a variation from your case.
I think that, if you can possibly do so, you should ignore the lack of medical care that you suffered and accept where you are today.
i had hearing problems including a noise similar to tinnitus, but it eased over the months and now i have minimal hearing problems.
Throughout, i have tried very hard to be positive, to cherish what i can do rather than what i can not. To smile a lot every day. And to try to find what i might do in my new life.
Hello Clodagh, I was like you in so much as I had none of the usual stroke symptoms. I originally had a severe headache which showed my BP was high and was prescribed beta blockers. I then developed tinnitus and following a private consultation about the tinnitus I had an MRI scan which showed I'd had a stroke. It was a big shock to the system, I was fit and well up till that point.
I wonder if you take aspirin as this can also cause tinnitus.
I have an NHS hearing aid which plays white noise and the sound of waves to combat the tinnitus which is helpful, it may be worth enquiring about. I have also realised recently that my hearing is not as good as it was which I think is due to the tinnitus as well. The hearing aid is worth trying it gives me a lot of relief when the tinnitus is really loud, it can be quite trying at times can't it.
Hope this helps.
thank you so much for your message. I have made a really good recovery and I'm grateful but it does get me down especially the dizziness.
I am conscious that I may appear a little drunk ( not a good look on an early morning walk with the dog)
A neurologist told me that my case was a total disaster but that "we can't have everyone turning up at A&E with dizziness and vomiting being treated for suspected stroke"
A stoke in the cerebellar accounts for less than 10% of all strokes ...
thank you so much. Yes I was given a hearing aid but I just couldn't get on with it. I was never offered the type you describe but I will certainly look into it. I find it unbelievable that nothing can they rid of this annoying sound.
I do take aspirin but never knew there was a link between the two so will definitely investigate that.
everybody has such different experiences.
I also have fatigue which gets worse if I stay up late or do too much activity. Trying to learn what I can and can't do..
my husband detests when I take to my bed in the afternoon so I have to be careful that he doesn't catch me .., I think it reminds him of when I was in hospital and when I came home.
Outwardly I look perfectly fine ( no limp leg or arm) and that's the problem. You look well so why aren't you well?
I have a little part time job and I have a personal trainer to keep me active. Putting on weight has been a problem too.
There has been improvement but it has been slow. I remember someone saying it took up to two years. It will be two years in October.
Do you have any dizziness or balance issues?
the scooter is a great idea and wish you luck with it.
thank you for taking the time to write to me.
clodagh
Hi Clodagh, it's quite common to get tinnitus with aspirin so it will definitely be worth following up. Most people take Clopidogrel instead of aspirin. Hopefully the change will sort out the tinnitus for you, if not I would enquire about the hearing aid it's available on the NHS.
Thats the least I can do. I had my stroke 3 yrs ago prior to the stroke I was backwads and forwards to the GP with the most dreadful pain in my head I went t the hospital was given different tablets every time none of which helped I lived on strong painkillersL Looking back itmust have been the oncoming stroke as it was about 2 months after I had my stroke. It has left me with a dreadful head I describe it to anyone it feels twisted inside and I have got double vision. My balance is awful.Sorry to have gone on.but it all gets me down. Norma.
With your good attitude you will get improvements over the next year.
I benefited a lot from seated yoga. It is another way of approaching our symptoms.
My hearing problems started to improve when i worked out that it was echos that i couldnt process. Just realizing the problem, my brain corrected the issue in a few months.
I wonder if the dizziness is a variation of stroke fatigue.
I have felt less unwell now that i get good night time sleep.
Hello Clodagh , wake in morning, feel ok ? Get tea & toast, myself, then start downhill. Fatigue, giddy etc kicks in about 11.30am ,my wife will get me early lunch & I am back to bed till approx 4 pm . My wife & 2 children so understanding ,as you stated, other family do not understand or poss want to listen ? ( I don't know why I feel they should ?)they think 1 year on I should be better !
I had a TIA last November 2019 which was diagnosed by the paramedics who then took me to the hospital at 1:00 ish on a Monday morning. I walked into the ambulance fine and felt ok. BP was off the scale over 214/136 odd but apart from that no problems. I was booked in at the hospital and popped on a trolley being left in a cubicle. Asked the nurse roughly how long to be seen and she said at least 4-5 hours. Anyway by 5:30 ish in the morning I felt awful and called the nurse who got a doctor. He did a few brief checks and got me in for a CT scan. They then brought me back to the cubicle where I stayed until going onto the stroke ward at 3:00 ish in the afternoon. Then they started treatment to try and get my BP down which was still off the scale. Needless to say it was all too late and I had had the stroke. Found out a month or so later about clot busters etc which I was not given so being honest the 4 hour rule depends where you end up and as many have said on the forum care is a bit of a lottery to say the least.
Just to top it off I had to go private to see a cardiology consultant because I had started getting palpitations and irregular heatrbeat back in February. I thought after reading a bit about strokes this was not good so went to A&E twice and spoke with my stroke consultant about it before he signed me off in February. He said not to worry and told me to get an appointment through my GP to see a cardiologist. Unfortunatly this was canceled twice over the last 6-7 months hence going private last month. Anyway private consultant told me I was at very high risk of second stroke because the blood thinners I was on, Clopidogrel does not prevent clots in the heart and I should have been taken off it immediatly back in February and put on an Anti-coagulant. So I got a private prescription from him and shot over to our local chemist who relieved me of just over £80 but the anxiety of waiting for communication between GP and him and then getting an NHS prescription was not worth it.
Hello - sorry to hear of your bad experience in hospital. I had a similar one only my 4hr delay was caused by 111 misdiagnosing a stroke. My stroke struck at 6pm after tea when my left arm dropped suddenly and I couldn't move it. I was given an out of hours GP appointment at the health centre for 7.30pm. There was a queue as always and I didn't get seen until 8.45pm. By this time my leg had started to contort and twist as well as my arm being completely numb. The GP called the ambulance at 9pm to come to the surgery to collect me and I was taken to A & E. By the time I had been booked in and waited my turn it was gone midnight by the time I had a CT scan which confirmed the stroke was still ongoing. Finally got a bed in the stroke unit at 0430am next day only to be told that my 4hr slot was well and truly passed. When oh when are stroke victims going to be prioritised by the NHS? If I'd have had a heart attack, 111 would have called the ambulance immediately. Soooo, 100% agree with you that where you live and how good your local hospital is has a lot to do with your recovery. Glad you got sorted out though. I too came off Clopi - awful drug!
The fast test helped me diagnose my tia learning a lot from this forum. Didn't know that aspirin was a blood thinner does this means you have to be more careful if you cut your self I'm very prone to grazing especially when I fall I suffered from tinnitus anyway finally found a tinnitus app that's free and helps I'm thinking of investing in a tinnitus relaxer hope everybody keeping well
low dose aspirin can be used instead of clopidogrel etc. but its not the standard size we have for headaches etc. the standard dose is 300mg but the daily aspirin is 75mg.
blood thinners mean the blood does not clot as well as we want. So a cut will bleed for a longer time. It doesnt mean we will cut ourselves more often.
i do not have tinnitus, thank goodness, but i use a tinnitus relaxer to relax. And to get me to sleep. One of my better buys. About £35. I later bought a mains adaptor because it went through batteries quite fast.
I am confused who you are perhaps you can message me again. I havent written a message for a long time about my head problems. Are you Norma the message ended with the name Norma. Thank you Norma jean.
Hi @Clodaghcli what a terrible experience you had I hope your recovery is going really well. I had a major Stroke last year when I was 47, I too didn’t have facial droop, my first symptoms were what I described to the doctor as I felt drunk, I couldn’t get to the surgery because I was staggering all over the place, it was during Covid so no home appointment so I had a telephone appointment, I was diagnosed with having vertigo and a virus he prescribed anti sickness tablets. This was on the Monday but I had felt unwell since the Friday, never thinking it was anything serious, Tuesday night I fell, my Sons called an ambulance the paramedics suspected stroke straight away because my left arm and leg were all tingling and I couldn’t walk by this stage, the stroke team were waiting for me outside the hospital and from there the treatment was great. I’ve recovered really well, won’t be running any marathons but I’m up to 6miles a day on my exercise bike now, I have what I think they called pulsate tinnitus, it’s not as loud as it was, hopefully yours has got better since your post.
I did meet someone who was doing Stoke research in younger people while I was in hospital he said the fast symptoms are often not present in younger people and the work he and his team were doing they were trying to make people more aware of this.
Best wishes