Stroke and RCVS ( reversible vasoconstrictive syndrome)

Hi Melina,

Thank you for asking your question about RCVS. It is good to hear you are seeing a Neurologist, they will be your best resource for information on RCVS and the effects it can have. Here is a link to more information on RCVS. The literature states that this condition usually resolves in around 3 months and can cause ischaemic (clot type) stroke and haemorrhagic (bleed type) stroke. Speak with your neurologist about how this will affect your recovery and rehabilitation.

Here is some information about recovery including pain, fatigue, and brain blanks after stroke.  

Pain:

There are many types of pain you might experience after a stroke, such as injury pain, neuropathic pain and headaches. Pain makes daily life difficult and can wear you down over time. Pain experts emphasise that even if you can’t make your pain go away, it is almost always possible to reduce pain levels and improve your quality of life. Treatment options include medication, psychological treatments, electrical stimulation, exercise, and equipment and keeping active. Your doctor may refer you to a specialist pain management clinic (which can include a pain specialist, psychologist, physiotherapist, occupational therapist for specialised programs to help with chronic pain)

Resources

Pain after stroke factsheet 

Pain EnableMe resource page

Fatigue:

Fatigue is another common experience after a stroke. Fatigue can affect anyone who has had a transient ischaemic attack or a stroke. It does not matter how mild or severe the stroke. Fatigue can include symptoms like tiredness, ‘brain fog’, impaired memory and decision making, moodiness and irritability, anxiety and depression or low motivation. Some tools to manage fatigue include balancing activity and rest, maintaining exercise, diet and sleep, and speaking with your family and friends about what’s happening and how they can support you. 

Resources

Fatigue fact sheet

Fatigue EnableMe resource page

Fatigue blog

Brain blanks

Finally, with brain blanks do you mean having memory problems? Or an empty feeling? Some things that help include keeping rested and relaxed, pacing yourself, keeping things simple, memory aids, supporting your concentration and talking about what has changed since your stroke. Your neurologist can also assess and make suitable recommendations for you. 

Resources

Thinking and perception fact sheet

Thinking and perception EnableMe resource page

If you would like to talk with one of our friendly allied health professionals, please contact StrokeLine 1800 787 653 or email strokeline@strokefoundation.org.au. We are available from Monday to Friday 9am to 5pm AEST.

With kind regards,

Kath, StrokeLine

Thankyou for your comment , howeever this is all the same info allready available on this website and dosent answer my question specific. 

Im aware rcvs is meant to resolve , as i said my stroke was may 2020 and the rcvs has not resolved it has baffled the neuro and the medical team and it seems all info everywhere is limited. 

Today i had a geriatricts assesment done at the hospital and im being reffered to a neuro psychologist for even more assesment re memory issues.

It would just be nice to know atleast 1 person with the same conditon to hear their experiances or recommendations

Thanks Melina for replying. Yes, hopefully others with RCVS will also join in the conversation for some peer to peer support. It's good to hear that you are getting neuropsychology follow up for your memory too. 

Kind regards,

Kath 

Hi Melina,

I have found a person that has had a similar experience to you with RCVS.

Her name is Tahnee, here is her comment:

Hi Melina
I was so shocked see this, I had to double look to see if I was reading RCVS … I too last March suffered from RCVS 2 hours after the birth of my second son, I was in hospital for 11 days with thunder clap headaches daily and I was told it was just migraines ( never suffered with these prior ) the pain i will never forget !!! on the day of discharge I couldn’t walk, talk, or see the midwife properly and I was discharged. Only to have a MRI as a outpatient 4 days later when it picked up I had suffered From RCVS, 5 mini strokes, and bilateral dissection of my vertebral arteries !! Let’s just say I must of had someone looking over me -
I was told my RCVS had resolved itself 3 months after from multiple MRIS and ct scans but I’m left with white spots on my brain also I now suffer with what they tell me are basilar migraines which can be so debilitating, these episodes can happen up to 15 times a month sometimes more . I’m from Melbourne and have been seeing an amazing neuro from the Alfred who I see every 3 months for Botox in my scalp and neck region, and on medication daily !
I would love to chat more to you about this as it is such a rare condition but I’m told it’s more common then people think !
I hope you are ok
Tahnee

Would you like me to reach out to Tahnee and connect you both?

Diana 

Hi Melina 

I have RCVS, diagnosed after a intraparenchymal haematoma in the left parietal lobe August 2021

They believe medication post shoulder surgery may have triggered it. I also believe I had an episode in 2019.  I presented to emergency with a thunderclap headache but they sent me home without any scans and told me to follow up with my GP for my blood pressure. Next time I had another thunderclap headache 3 days after surgery I didn’t go to emergency because of my previous experience.  Had another one the following night and that is when I had the stroke, lost all feeling on my right side and went to emergency via ambulance. 

Feel free to connect with me if you’d like to chat.