Hi all,
I am new to the forum and I hope I am posting in the right place and I can get involved with the site and get help and offer help.
Three weeks ago , I was getting ready to leave my house and I was hit with a horrific headache, I couldn’t find the door and went completely disoriented and felt very ill. My husband called an ambulance and I was taken to an and e . 15 hours later and after two different ct scans I was sent home to come back for an out patient mri and it was unclear if it was a bad migraine or a stroke. Physically I was ok, just weak, exhausted with a terrible headache. I had the mri a week later and a week after got the devastating call from the stroke consultant saying I had had a big stroke and I needed to go to an and e urgently for further scans. The call was 5 minutes long, not expected and wiped the floor with me with shock. I have since had the extra scan , the a and e doctor explained it was a blood clot in the right artery of my brain. Although physically very lucky to be ok, he said I might develop seizures. With that terrifying thought, I was sent home with high dose statins, alongside blood thinners and told I needed a heart scan and a halter ecg. I am in the middle of these tests. I don’t have an appointment for the stroke clinic until January 2026. So much more I could say. I am overwhelmed and devastated, very afraid and feel quite alone. The statins are 80mg averistatin and 75 mg clopidogrel. I have so much nausea and feel weak when I walk. I have had no instructions or leaflets or anything on how to care for myself other than common sense. The doctors want me to try to overcome the nausea side effects of the drugs, I am persevering but this is adding to my misery.
I would be very grateful for any advice and support as to others medication experiences and will this get better. Plus thoughts on any other ideas for help and information.
I am 64 , before this happened I was a healthy , sporty lady, always busy with three grandkids and hobbies , no blood pressure or cholesterol issues, so I was blindsided in ignorance and arrogance that this wouldn’t happen to me. I have nothing but humility now and want to be involved and ultimately when I am better help others cope. Any replies would be very gratefully received.
You have come to the right place. We have all been where you are now. Believe me no one expects to have a stroke whatever their health or lifestyle. i know nothing about statins but someone should be along soon who is more knowledgeable.
Hi @Gilly23 - Welcome to the community and you are absolutely in the right place.
Here you will find support and information that will help you cope with the situation you find yourself in.
I myself am not a stroke survivor and so would not wish to offer any advice on the medication at this stage until I get to know more about your condition. There are plenty of members of this forum who will be able to offer advice as they will know from personal experience and having experiences similar to yours.
My basic advice and this goes to anyone regardless of whether they are stroke survivors or not is :
- always read the medication leaflet/information (look it up on the NHS website or DRUGS.COM website if no leaflet available)
- Know what the medicine if for/what it does
- What the side effects are
- What medicines/foods it reacts with
- When to take etc.
- Talk to your pharmacist/GP if not sure
- Listen to your body
- Your body/brain is giving you feedback when you take medications - listen and respond accordingly
Be prepared to challenge and ask questions of healthcare professionals - they are not stroke survivors (at least the vast majority) and so they have not experienced first hand what you and all stroke survivors here have. They know only theory and you know actual facts - this is a major difference. Please not this is my advice only and I am not suggesting they should be ignored, but sometimes you do need to ask “Why?”
For example,
Why if you were healthy and no high BP or cholesterol issues have you been put on high dosages of statins and blood thinners?
This is a valid question for you to ask. Is this appropriate for you? Yes, this is the “standard” they issue to all patients, but are you the standard all patient?
If you are really worried, then make an appointment to see your GP and get some reassurances.
This forum will also help answers some of your queries and concerns.
Try not to worry - just watch out for any signs and don’t be afraid to ask for help. If you feel unwell, contact your GP or 111 - don’t wait for worst case scenario.
One final piece of advice - Please sit down with your husband and talk about what has happened. You both are affected by this and you both must be reassured and helped to manage your onward journey henceforth.
Wishing you all the best.
Namaste|
Gilly-- I know how you feel–scared and overwhelmed, after always being pretty healthy–just like I was. Well, just remember all this stuff the doctors are doing will help to heal you and keep you from another stroke. I had to go through all the steps you are talking about–scary-but in hindsight, really not too bad. They found afib, so I was put on medication for that. I didn’t tolerate it well, so after trying 2 or 3 others, we finally found one that worked and didn’t bother me at all. Also a blood thinner and low-dose aspitin. All these things to ensure good health going forward. I had been paralyzed on my left side, but with rehab I am fortunately back to being ok. So, all in all I “got through it”, and you will too. 
. If there is a bright side, I now don’t take life for granted and am more sensitive to the trials of others. If you have a medication that doesn’t “sit well” with you, speak up, because there are so many different ones and doses that will “sit well” out there. And --we always here for support.
Thank you. Kind words and encouragement go a long way don’t they. One day at a time, everyday is different for me at the moment. It’s hard not to feel left behind by the world. I guess this is the experience of anyone for whatever reason suddenly loses their health. I am learning to take nothing for granted.
Thank you. Yes I agree we need to talk it through more. I can see the stress etched on his face. Also we shared so much, just from the running of the home to looking after the grandkids, our social life has stopped too. He is doing so much but I am encouraging him to go to the gym and go out to his swimming without me. I know he doesn’t like leaving me alone. So many things change in a second.
Thank you all. When I was lying waiting for the ambulance as much as a lot of it is a blurr, a thought I kept having was is this it? This is my life changed forever and a very deep sadness. I want to fight back from that.
To give the fear some context, my maternal grandmother and mum died from strokes. They were both swiftly and badly disabled from strokes . It has always been a fear for me but I worked hard to stay fit and healthy, they were in their 70’s, and I thought if there was a genetic link I had time… my mum smoked and had very high blood pressure as did my grandma. Anyway, today is a new day. I hope today brings good things for you all and happiness. Thank you for taking time to reply. It means a lot me.
Hi , like you Gilly23 I too suffered same type of stroke, I presented at hospital and was told CT showed nothing but given my history of neck and back issues (both damaged ) I just needed metal work in my neck. So 48 back and this time advised it’s a stroke.
Although not as fit as I was still an active martial artist and gym attendee, a little overweight but fitter than most my age at 52.
I’m on same drug regime and didn’t understand as low chlolestarol count as well as lower blood pressure too.
Advise wise take things slowly, learn to listen to your body( I haven’t and working on solutions) take your time , possibly read through here, so many well informed people who have lived this experience.
Wishing you a strong recovery.
Welcome to this community @Gilly23. You never dreamed that you’d need to be here, but I know that you’ll find lots of help and support.
My understanding that this is the default medication, prescribed as a matter of course. I’m on the same and probably will be for the rest of my life, with no evident adverse effects so far. I’ve recently discovered that I’m walking around with a moderate amount of coronary heart disease as well, and I’d have been prescribed the same meds for that if I wasn’t already on them. Double bubble! But @ManjiB is right, you should ask questions, understand what you are on, why and for how long. Mr doctors were annoyingly vague on that sort of thing, and I had to push hard to find out. I’d push back on the wait for the stroke clinic as well, if I were you. January is a long way away, and you have nothing to lose by trying.
The doctors will do all they can to support your physical recovery, but in my experience they are not so well equipped to help with the mental health aspects. You’re going through a confusing and frightening experience, so be kind to yourself, give yourself space to recover and seek the support and understanding of those around you. Like any difficult undertaking it gets easier with a bit of help.
@Gilly23 just popping by to say hi & welcome to the community. These strokes do tend to come as a massive surprise. Right now, I imagine you are just trying to come to terms with what has happened & that can take a little while.
It is very possible that your nausea will settle once you have gotten used yo your meds. Did you get prescribed Lansoprazole too? That is usual as clopidogrel can upset your tum. If you aren’t on it try & get some fyom your GP. Don’t take omeprazole as I believe it has contraindications with our meds.
I am on 80mg statins too. If it is those causing the problem then ask to try a lower dose or an alternative statin. There are many out there.
The tests you are having are all normal after a stroke & it is good you are getting them. I found talking to my GP about my concerns helped as they were able to advise & answer my questions.
Aldo give the Stroke Association helpline 0303 3033 100 a call. They can send you some leaflets about various aspects of stroke. You can also access them in their website
https://www.stroke.org.uk/our-publications
If you have any specific questions ask away. We’ll all do our best yo help you.
Best wishes
Ann
thank you. That’s very supportive. Yes I am on Lanzaprozole. I have changed to taking it late afternoon and that seems to help me digest my main meal. I have cut my food to small simple portions. I think my anxiety has hit my stomach too and I am not sleeping well.
It’s good to hear that you are managing the meds. I will persevere, I know the risk will always be there but I want to do all I can to reduce it. I think the mental part has been by far the hardest for me. I may ring the helpline and just talk… I need to process. Thanks again.
*thank you for your kindness and wise words “. It gives me strength knowing others are out there, surviving and coping. Let’s all live our lives the best we can.
Anxiety could be causing a lot of your symptoms. Ringing the helpline to have a talk is a great idea. Getting your thoughts and feelings out there often helps even if you get no answers.
The Stroke Association also have a Here For You Service where you can talk to someone who has been / is going through something similar to you.
Hope things start improving for you soon.
Ann
Hello @Gilly23 i was a little older at 49, and like you was healthy, plant-based vegan diet and walking everyday. Yes there is a genetic component to stroke high blood pressure and weak vessel walls i’m the first person in my family to my knowledge to have one. I personally believe that my aneurysm a blood vessel that balloons and subsequently bursts was due to an accident i had in my 20s when i fell out of a moving car onto a beach. I like you am always waiting, waiting for a Salt referral an orthopaedic surgeon referral etc. It seems utterly bizarre to cheat death only to have to sit about waiting! Best of luck, everyone is rooting for you❣️
Thank you and for the link. It would be great to talk to someone. My friends and family have been very supportive but their lives go on. They all say how shocked they are but they don’t know and I don’t want them to know the fear I feel.
Thank you. I hope whilst waiting you are able to get on with some of the things you love.? I am trying to walk an hour a day, it’s a slow plod but helps me cope and gives me hope to one day get back to my normal exercise and be able to swim again.
Hello @Gilly23 - I rather feel that you should not keep things from your family and friends. In my experience and possibly many other members on this forum find that family and friends are the best support and they do need to know how you feel. Knowing how you feel, better helps them to help you and this is especially the case with your main carer(s) which I believe is your husband.
In my view, there is nothing to be gained by keeping things from the family and friends and much to lose. This is just my personal view and really it is your choice how you ultimately connect with your family and friends.
Take care.
You are never alone. Adjusting to your new life is a challenge we take together.
Thank you. Hearing others surviving this helps. I feel like I am in suspended animation and all my usual strategies of keep busy, plan a holiday , a day out.. seem all too much ,
Guess this is part of the journey to the new normal and my brain accepting it. Time will help, I keep telling myself over and over.
Once all the tests are completed, I know there may not be a clear answer but I know then, there is no more I can do but live my life the best I can.
Thank you for your support and reaching out.
It is early days for you yet. Things will improve you just need to give it time. I had to learn how to be patient after my stroke…i genuinely thought life would be back to normal after a couple of weeks. Hmmmm how wrong was I but life did improve, those holidays, days out & being busy will all happen for you again.