Is there medical help available? Had 2 strokes under 50 years of age and don’t know where to go from here.

[2005Claire]

Now aged 50, still physically very active.

I have been feeling unwell for about 7 years.

Symptoms-feeling of unreality every minute of the day which led to anxiety and panicy feeling (no fast breathing but feeling of dread which led to vomiting about twice a week).

Spongey feeling in my feet where I felt a bit unstable.

I also suffered dizzy spells where the room spun around terribly about once a month.

Once sitting watching tv both my eyes decided to do a twirling whirling circle motion for about 5 seconds completely round and round - such a weird experience.

One morning had a good lie in as I didn’t have work the next day only to find arm and leg felt dead and I lumbered to the bathroom for a wee and had trouble pulling my pants down.

Multiple trips to 2 local GPs who put me on anti-depressants, sent me to a balance clinic.

Balance clinic after saw a nystagmus in my right eye and decided to do an MRI scan.

MRI results took 6 months.

GP said I had 2 strokes showing - 1 on each side of my brain.

Sent me to the stroke clinic who did blood tests and MRI

He said the strokes could have been anytime.

Stroke consultant on cholesterol and blood thining tablets now (about 6 months so far)

No further appointments with the stroke consultant.

I managed to lower and lower my anti depressant tablets to zero.

My question is - can I get any help regarding the unreality, or any other help to assist me in regaining a better grade of life?

I no longer have anxiety as I now know what caused my feeling of unwellness.

But I am stuck with this depersonalisation and I do have to think longer for words these days. I also feel more delicate (if that makes sense) , things around me make me weary.

All the things that I have read regarding strokes always lean towards physical rehabilitation but mine is slightly different.

I have no trust in my GPs so don’t want to go there without knowing what I want to say, what treatment I require from them via referral so I thought I would ask here.

So sorry for the long post but by reading it and helping me you could change my life.

Like a swan I’m calm on the top but frantically struggling underneath trying to keep my life together.

[Tucson]

Do you know what caused your strokes? Saying they could have happened at any times sounds like they need further investigation to me. I had two strokes 2011 and 2013 and it was only a year after my second stroke that I was given a reason for them. I like you was fit and healthy although in my fifties should not have been a candidate for a stroke. I had an extremely healthy lifesyle yet on testing my cholesterol was high and so were my Liver readings. I was eventually tested for all sorts of auto immune conditions. I tested positive for one which was the cause of my strokes. I'm not saying you have the same but it's possible that you have an auto immune disease. I have Anti phospholipid syndrome but see if you can get your GP to test for that and other auto immune diseases. It may give you the answer.

[2005Claire in reply to Tucson]

Thanks for your reply.

Yes, they did all sorts of tests and nothing showed up.

I’m on cholesterol tablets, blood thinners and tablets for high blood pressure.

Tucson, once you were diagnosed did you have any after care?

I feel like I need something as I am struggling with this unreality and feel no confidence in either of my 2 GPs.

[Tucson in reply to 2005Claire]

Follow up from the stroke team was negligible at best, even after I went on to have a third stroke last february I haven't had any follow up other than hi how you doing some 6 months later. However I do have an Aps (antiphospholipid syndrome) specialist at St Thomas' who has taken over my care. Referral sorted by me through my GP. You'll need to bang on at your GP to get a referral, in your case a neurologist would probably be your best bet. It doesn't help when GP's are less than helpful, I have to say mine has done whatever I've asked for. I at least had a diagnosis to work from even though apparently I'm a very unusual case as I have none of the common symptoms associated with Aps. I'm on Warfarin for the Aps but the local Haematologist was adamant my Inr stay at 2-3 but my specialist has raised it to 4.5 which causes concern for everyone except me, the specialist and now my GP, all other doctors are horrified.

[Wittycjt in reply to 2005Claire]

“all sorts of tests” means nothing... a lot of times they don’t even think APS ( Antiphospholipid syndrome) because it is still fairly new to doctors. I have it too. Pleases ask them specifically “did you test me for Antiphospholipid syndrome?” If they haven’t request it.

I also am very tired and have had 2 strokes at age 53, will be 57 this November, and was very healthy. I used to do cartwheels and splits, very flexible, now very static

[2005Claire in reply to Wittycjt]

I photographed the blood test request, wonder if I can find it on my phone.

[Wittycjt]

I private messaged you

[Sunny570]

Hi Claire

I had a stroke one year ago and I am still "walking on eggshells" but every day it gets a bit better. I was tested too for the APLS and it came back positive but the test is common to report false positives on the first try. The second test was fine. The doctors also gave me a TEES ( Transesophageal echocardiogram) and found a PFO that caused the stroke. That is also a common cause of strokes. I don't know if they checked but that is another option.

I hope the feelings of depersonalization and word finding lesson over time. I had them in the beginning too. My cardiologists are much more helpful than the neurologist in discussing things. The more you practice games like crossword, scrabble and other like games it should be helpful . Just know there are many of us out there swimming like that swan!

Hopefully it will get better for you!

[2005Claire in reply to Sunny570]

I had a 24 hour heart test and an ecg/doplar thingy.

That ladt sentence brought a little tear to my eye, thank you all for understanding and support.x

[Sunny570 in reply to 2005Claire]

An ECG will not find the PFO but I am not sure about the Doplar-I had several heart monitors and they never found a-fib but you never know about that you have to wear a monitor for at least 2 weeks to get a decent reading!