Hi Cathy, im sorry for not replying sooner. I decided to take a bit of time out as ive been struggling with it all to be honest. However, id like to be of help to you if i can. My CVST began in Aug 2022 with a sharp pain in the back of my head. No paralysis at the time so i talked myself out of the idea of it being a Stroke and stayed home for 3 days. I had severe dizziness and vomiting. I did nothing but sleep and be sick. My recovery is still ongoing and it now looks like im about to lose my job as theyve got fed up with waiting. I still have cognitive difficulties and still cant walk far. Its life changing but stick with it because we are the lucky people that survived this awful event. I was told in the hospital that many people dont reach hospital with this condition. We are fighters. You are welcome to contact me again. Take care.
I feel as though you have written this and it’s identical to exactly what happened to me. Even down to the holiday, scans, stoke ward. Multiple clots…
I had my CVST May 2024 and I’m still struggling with long term daily headaches, off vision and extreme tiredness. I’ve been using propanalol daily, this has helped me significantly. However I’ve stopped taking it because it was making me feel really down.. have you managed to find a suitable pain relief? Or have your headaches subsided?
Thanks for sharing your story.
Adam
Hi Adam, i’m sorry to hear of another case of CVST. It is now almost 3 yrs since i had mine, and the clots are still there, along with the difficulties that come with this awful condition. Im sorry to say that i am still struggling every day with the headaches, and they are quite debilitating. It is common for people with this condition to suffer with raised intracranial hypertension. I wake up with this every morning, and it gets worse with activity. The fatigue is also still an issue for me, and I’ve really struggled to come to terms with this. I am on blood thinners, and i take propanalol and paracetamol for the headaches. The propanalol isn’t working for me either. I’ve had to lower the dose as it made my dizziness worse. My neurologist did put me on topiramate, which i did well with, but I had to come off it due to its vision problems. I was upset about this as it was the best thing for intracranial hypertension. I have found that the GP struggled to know what to try me on, so you are better off seeing your neurologist. I don’t know what you’ve been told, but the stroke team warned me to expect a long recovery. You have to get plenty of rest. I find that my brain makes these decisions for me as literally everything shuts down, and i just drop to sleep. You have to carefully plan all events like appointments or visitors because this zaps energy. You are still very much in the early days, but i hope you have a good support network around you. It helps to think about the things you can do rather than what you can’t. I look at my children every day, and thank god I’m still here. We are very lucky to have survived this dreadful event. Please take care and let me know if you need any more advice. My husband tends to type my responses for me as i struggle with this still, so i apologise for any delays in getting back to you, but you are welcome to message.
@Adam1994 just popping by to say hi & welcome to the community. Sorry to hear of your stroke & your continuing struggles.
If you have any questions then just ask away. There’s usually someone around to respond.
Best wishes
Ann
I’m really sorry to hear that, I hope your symptoms improve over time. Thank you for all the advice.
I’m 30, have a toddler and another baby on the way, I’m hoping to get sorted with some solution to the headaches and fatigue. I run my own bathroom installation company, and have returned to that full time but very much struggling with the hard graft. I do feel the same about the GP.. neurology has discharged me. My clots are almost dissolved, the haematologist has done loads of tests but ultimately failed to attain a cause, they did think I had lupus from positive anticardiolipid antibodies test, they repeated the test four times and came back with 2 negative and 2 positive so who knows. Ive been advised to remain on warfarin indefinitely, I have mixed feelings about it as before this I was fit and heathy and now I’m taking a barrage of meds, but ultimately I will continue as instructed.
I went on holiday to turkey, on the last day I started to feel unwell with flu like symptoms. I flew home, went through the 4 or so days of illness then started to feel better. A few days passed and I got a headache, it continued to get worse and worse, over the next 3 days I made trips to my gp and a&e, on the fourth day I returned to a&e and got scanned, from there I was put in resus until a bed became available at the nearest neurology hospital (Preston). I spent 3 1/3 weeks in there I did not realise how unwell I actually was until I had been there a few days. Spent the next few months at home recovering and gradually tried to return to my normal life. I asked how many clots and was told it was a significant amount of clots in all areas of the brain, I haven’t looked into all the correct terminology.
Some things I have been struggling with since the event are: headaches, tiredness, hives, low mood, memory problems (forgetting things a lot)
I’m mentioning this to see if anything from your experience lines up with mine.
I do apologise for hijacking your thread, but glad you replied.
Thanks ann for your message as well 
Thanks,
Adam
Hello @Adam1994 - Welcome to the community and sharing you experiences.
You have not hijacked the thread - we all share experiences and knowledge and there are often overlaps and cross-overs when people respond or join the conversations.
Wishing you all the best on your journey to recover from CVST,
Namaste|
