EnableMe | enableme - stroke recovery and support

Been a migraine sufferer, in the last week, 4months post both my strokes I've started to get random headaches, that come and go through out the day, roughly where both my strokes show in the MRIs.. I had my first stroke outpatient appointment on the 1st Sept and that was a joke, not one question answered and was just told to see my doctor.

Sadly since all of this I can't help but wonder why some of us do not get any help, do I have to lose control of my limbs for any help ???

Hello Sam,

Thanks for reaching out on EnableMe and sharing what you have been going through. It sounds as though in the last week things have been challenging for you, especially with feeling you have been offered or received little support. It can be difficult to manage these challenges alone.

Unfortunately, headaches can occur after both haemorrhagic and ischaemic strokes and can be a common impact of a stroke. Headaches can also be caused by a range of issues. These include medications, fatigue, stress, dehydration (the usual amount of fluid per day is 2 litres if not on fluid restrictions), withdrawal from alcohol or caffeine or other musculoskeletal injuries such as neck pain. It is important to rule out things that may be causing your headaches apart from your strokes.

It may be worth writing a diary noting when you feel fatigued, the time of day you have the headaches, your fluid intake, caffeine, alcohol intake, what aggravates or eases the headaches. You can then take this to your GP to determine the cause of these new symptoms. It is always important to get a medical review of any new impact or symptoms after your stroke. Your Gp can be a good first point of call to look at the cause of your headaches, and possible treatment options for them as well.

If the headaches continue for a longer period I would also suggest that you talk with your GP about a referral to a Pain Clinic. The Pain clinics are multidisciplinary clinics that specialise in pain management for chronic pain (pain that has been present for more than 3 months). I know this is a long way off, but it might help you better manage the pain if it continues.

Sometimes it can feel like there is little support for those with hidden disabilities, and there are likely to be others that will also feel the same. The more hidden impacts of stroke, especially headaches are still important to identify and work out the root cause, so it is great that you have reached out.

Given that none of your questions were answered at your stroke outpatient appointment, would you consider getting a second opinion and following up with another neurologist? We would always recommend a second opinion if you feel you were not listened to or heard. Your Gp can organise a referral to another neurologist. It is important that you get appropriate answers to your questions, your health, and questions about your stroke are important.

If you would like to talk about what has been happening for you Sam, and how it is impacting on you, do reach out to us here at StrokeLine. We are more than happy to talk over the phone or via email. You can call StrokeLine on Ph 1800 787 653, or email the team on strokeline@strokefoundation.org.au. we are available Monday to Friday 9am to 5pm AEST.

Warm regards

Siobhan - StrokeLine

Hi Sam,

I can very much empathize with how you're feeling.

I experienced a ruptured aneurysm in 2020 followed by a stroke four days later.

Fortunately I don't have any obvious disabilities but like you, experience frequent headaches. The feedback from various medical professionals has been less than helpful. GPs have told me "that's your new normal". For someone who has experienced this, those types of comments don't reassure.

The surgeon told me that headaches are common. He told me that if I take painkillers and the headaches don't subside, I should seek medical attention.

This was really difficult for at least 12 months afterwards. It's three years since I had the surgery. It's becoming easier to live with the headaches. It helps if I stop what I am doing and rest.

I hope that you find some answers and support.