Hi all. New here. In 1990, I underwent a right temporal lebectomy for epilepsy. 2 weeks after the surgery, I was FAST positive and taken back to hospital. I was later diagnosised with hemiplegic migraines which mimic stroke symptons. 3 years ago I went to bed thinking I had a migraine and 72 hours later was still experiencing facial palsy. I went to hospital for a scan but was discharged. 3 months later I was experiencing vertigo attacks. I was diagnosed with meneries. I have been investigated for bells palsy, MS and lymes disease. I have been receiving botox for my face as it becomes very droopy and tight. I went to see a neurosurgeon in Nov 2018 only to be told I had infact had a stroke 3 years ago. As a result I have double vision, hearing loss in one ear, facial droop, 24/7 tinnitus. I am totally confused as to why I have seen 3 neurologists with speciality in eyes, ears and migraines during the past 3 years and it has taken this long for a diagnosis. They all had access to the same test results. Feeling totally lost.
Hi Jayne
I am so sorry to hear about the struggles you've gone through to get a diagnosis. I am not medically trained, so unable to explain why this happened but I hope you find some valuable support and advice on here.
In the Advice section on the homepage, there is some information on visual issues from stroke, which I hope you will find useful.
Take care
Vicki
That is so awful for you I really hope you now receive all the help and support you need now. I had a stroke a few weeks ago and I just feel like I'm going crazy sometimes!! What you have been through I can't begin to imagine the frustration you felt at not knowing what was wrong only to discover it was a stroke all along. Take care.
Hi Welcome aboard! Hopefully, you will now be seen by a specialist Stroke consultant who will give you all the help you need, if not you could ask your doctor to refer you to the nearest stroke unit. Another idea that might help is to call the Stroke helpline and ask them for the tel number of your nearest stroke group, then you will be able to speak them to, they are full of help and advice.
I too had many vertigo attacks and migraines before my stroke but touch wood since the stroke I have not had any!!! Amazing.
Good luck
Wendy
Thank you Vicki. I shall look at the page you mention. I am just feed up with my doctor referring to me as having complex medical needs but has previously told me to solider on and that people are far worse off than me. As if to tell me to be grateful and not to fuss.
Had a rough day following phone call to doctor. Sorry if I am ranting.
Many thanks
Jayne
Thank you for your message. Sorry to hear you have had a stroke too. I hope you are making a good recovery. It really helps to have someone to talk too.
Thank you
Jayne
Thank you Wendy. It would be nice not to experience any more vertigo. Do you have any lasting effects from your stroke?
Jayne
Hi Jayne
Yes I like many others suffer from stroke fatigue, nothing quite like it, also memory problems and my immune system is almost non existant. So since I started back part time in Sept as teaching assistant I seem to catch every infection going. But I survived and after a year off was able to return to a job I love, and I have a head teacher who has been amazing. I will never be able to do full time again but my two 5 hour days give me a reason to feel good about myself. So is worth the effort.
Hope your doing ok.
Wendy
Hello,
Sorry to not reply sooner but you may have a blood clotting disorder such as Antiphospholipid Syndrome or Factor V Leiden -two conditions that can cause Thrombophilia and make you prone to blood clots that can cause any or all of the symptoms you've experienced:
https://www.nhs.uk/conditions/thrombophilia/
Both can be tested for and, thankfully, there are good treatment options for them. Antiphospholipid Syndrome gave me severe migraines for decades before I had both a Massive Stroke and a Pulmonary embolism within the space of days. Since diagnosis and treatment started, no more migraines or blood clots!
Take care now,
Damian
So pleased to hear that you have returned to your job. I taught full time before my episode. I work 3 days over 4 in FE college. I love my job and the subject I teach sometimes wonder if it is worth the stress. this website is great, as I feel I have no one to talk too. I told my mum I had a stroke and I do not think she registered what I had said. I think she is in a pre dementia phase as when I gave up work she would always phone to ask how work was. Despite telling her I was not working she seemed surprise every time I told her.
do you meet up with other stroke survivors?
Thank you
Jayne
Hi Damian
Thank you for your message. I am due to go to the migraine specialist soon with a bundle of questions particularly why has it taken 3 years to diagnose a stroke. What treatment do you take? So pleased to hear that your migraines have ceased, that must be a big relief. I have been taking low dose aspirin for 3 weeks now. Since the stroke my migraines have not been as bad or frequent. Touch wood I have not had a vertigo attack since new year's eve.
I shall take a look at the email you sent.
Many thanks
Jayne
Hi Jayne,
You're welcome and I hope you can get the right diagnosis. These blood clotting disorders are pretty nasty and I had to almost die twice before I was diagnosed with Antiphospholipid syndrome.
The medication I am on now is Rivaroxaban - I had to wait three years for medical trials to finish before I could have it. I was on Warfarin before that, which prevented migraines and blood clots but made my blood dangerously thin sometimes and needed fortnightly blood tests - not great when you work full time and travel abroad on business.
I was lucky to be at a rehabilitation facility where the Registrar was time served in Haematology - he knew about clotting disorders and followed his instincts regarding why a fit and healthy 43 year old man had suffered a massive stroke during a migraine. Without his diagnosis, I would have more strokes.
My migraines stopping have been a positive outcome. You don't think a headache can lead to significant brain damage and paralysis but they can.
In the meantime, watch your blood pressure - mine was very high at the time of my stroke and I know now that it is the biggest risk factor for all types of stroke.
Thank you for your message and good luck with everything,
Damian
Thank you Damien. Interestingly, my father is on warfarin. He has had a couple of heart attacks and now has a Stent. My maternal grand father had a stroke due to late onset diabetes that my mother has. I have donated blood to the world geonome project to heloped identify genes which cause problems.
Thanks for you message
Jayne
Hi Jayne, I live in the Norfolk countryside and all though I used to go to the stroke association coffee afternoon, I found that the majority of those who attended were alot older than myself. Now I am back at work I need the other 3 days to rest and do some housework! Which is why having this site is as you say a good way to talk to others who understand.
Since my stroke my immune system is shot to pieces and I catch every going off the children at school, I seem to have had a constant infection since December. I think my doctor may have finally got me clear, but I have been left with considerable tiredness. I go to bed at half nine and sleep through til about 9am the following morning!!! Obviously the body needs it!
Hope you are doing ok. Wendy
Hi Wendy. I am in Suffolk. I go to Norwich to the facial palsy group. I have had facial palsy for 3 years but they only suggested a stroke caused it in Nov. I too get very tired. I work 0.6 FTE as a lecturer. At the moment I have a cold and feel I am forgetting lots of things. How did your stroke affect you physically?
I have been looking for a coffee group but I run a coffee and chat group for epilepsy action on the day the stroke group meet here.
Jayne
Hi Jayne,
I can fully understand your frustration, I had a similar experience with the NHS I was in a meeting at work in august 2012 when I simply collapsed, someone called an ambulance and I was taken to the local A&E where after a while I was diagnosed as having a chest infection, was given a handful of antibiotics and sent on my way, I felt terribly ill for a week after but returned to work after that week, I had been back for about an hour when I noticed that my left arm and hand wasnt working properly, I went to my GP who suggested that I had suffered a stroke and called an ambulance, later at the same A& they confirmed his diagnosis and I was admitted to the stroke ward where I underwent the usual tests including an MRI scan, my wife at the time was a blood science pathologist and discussed my results with the stroke doctor but was a little confused when the doctor kept refering to my stroke of last week, it transpired however that the MRI had shown a previous scar on my brain of about a week in age which indicated that I had not suffered a chest infection the week before but had actually suffered a stroke, to add insult to injury my wife also discovered that the antibiotics I was given for a chest infection actually carried a side effect of causing a stroke, she discussed my case with a stroke consultant at the hospital at which she worked and it transpired that as my stroke was clot based,and if I had been diagnosed correctly initially I would have been given clot busting medication which would have prevented my near fatal second stroke which has left me disabled, instead because the initial diagnoseis was wrong I was given medication which caused a stroke rather than prevent one, of course the hospital denied any liability and the law which provides a three year limit prevents me from taking legal action
It can be very frustrating I know but like the kennedy assasination and aliens on the moon, there are some things in life you never get to the bottom of, these doctors and "specialists" are not gods, they are simply human and as such are very capable of mistakes
Hi Jayne, I was lucky the only physical issues I was left with was a balance issue, which is why if I am going any where I am not familiar with I use a stick and then there is the stroke fatigue. I get that whenever I try to do what I used to do pre stroke. Which then brings me back to earth, that I will never be the person I was physically. I get frustrated but I have learnt to live with it. I also forget things especially if I am tired. I have a problem remembering things especially names especially those before the stroke. My poor husband can tell me where he is going to work and ten mins later I ask him again. This usually only happens when I am tired.
Hope you are coming along. Wendy
Thank you. I hope you are getting the support you need now.
I am off to hospital on Friday so hoping for some help.
Jayne
Best wishes Wendy.
Guess I am finding living with this difficult.