I am struggling to work out what or who to ask to be referred to for assistance ongoing. I have started working with a physio privately but I wonder if I should be seeing a neurologist, speech pathologist etc for checks?

On behalf of Em M's question above:

Hello Em

I am sorry to hear what you are going through and that you have been discharged home without a great deal of support. It can be very challenging to get home without a lot of information or support, especially when feeling fatigued and unclear.

I am pleased you have reached out and am sure there will be others who have experienced similar issues on returning home who will wish to comment on your post.

Have you been to see your GP? That would be a good place to start to get some clarification about what exactly has happened to you and what this means for your ongoing recovery and follow up. Your GP should have a discharge summary from the hospital which will explain what has occurred, what tests have been completed and a plan for follow up. Ask for a double appointment so you have the time to talk with your Dr and ask any questions you might have.  If you would like to reach out to us here at StrokeLine we can go through some of those questions with you in more detail but for  suggestions on what to talk about, see ourQuestions to ask or you can use the HealthDirect Question Builder. For more about self-advocacy, see our blog onHow to get the health care you need. 

In many cases, after a stroke the stroke survivor is referred to a neurologist for a follow up. Usually this occurs around three months post your stroke. If you have not been referred , it is a good idea to follow this up and ask your GP to send a referral through to the hospital for their stroke clinic, or your GP can recommend a private neurologist.

Given the fact you are feeling foggy and fatigued, it would be good to seek a referral to an Occupational Therapist. Fatigueis very common after a stroke and can be described as a feeling of weariness, tiredness or lack of energy.Symptoms offatiguecan include headache, dizziness, blurred vision, increased pain, aching muscles and reduced coordination and balance. Other symptoms include ‘brain fog’, impaired memory and decision-making, moodiness or irritability, anxiety and depression or low motivation.  It sounds like you might be experiencing some of these symptoms.  An Occupational Therapist (OT) can assist with developing energy conservation techniques and fatigue management strategies to help you mange your fatigue.  One way of personally managing your fatigue is through Pacing, Planning, and Prioritising.  

• Pacing is spreading out the activities you do and using numerous shorter breaks instead of one long break after an activity.  

• Planning is understanding what activities you are doing and when, making sure not to group up too many similar activities together. Eg spread out appointments. This also means assessing which activities make you feel more, or less, fatigued for future planning

• Prioritising mean understanding what you need to do and what can wait. If you have a limit to what you can do each day you can plan to do those things which are important and save unimportant things for other days.

This can help you better manage getting back to your daily activities and regular routine.

In regard to other services to help you to start your recovery and rehab journey, you might be best being referral to a community rehabilitation centre (depending on where you live) or the local hospital outpatients.   Both of these can help link you into a team of therapists to assist you with your rehab and start recovery.

What you are describing is common and many of the more hidden disabilities can make it challenging for others to understand what is going on for you.  Have you listened to our hidden disabilities podcast?  You can find the link here and it might resonate with what you are currently going through.  This unfortunately is not as rare as we would think.  Once again it is important to advocate for yourself and ask for more to be done in regards to your follow up.

Did you receive the My Stroke Journey in hospital Em? This is our primary educational resources about stroke. If you don’t have one you can download it here, or give StrokeLine a call and we can send one to you in the post.

It would be good to talk with you in more detail about what you are going through Em, so do feel free to reach out to us here at StrokeLine on Ph 1800 787 653, or on email at strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AEST.

Warm regards Siobhan (StrokeLine)

Sorry you are experiencing this Em, I can’t believe it’s still happening as it was two decades ago.

You are entitled to seek referral to rehab to address your post stroke recovery needs. Speak with your GP regarding referrals.

These may include: Physio, Neurologist, Neuropsychologist important for all sorts of psychological adjust and neurological challenges such as depression or anxiety after stroke, Occupational Therapist, Hand sensory therapy, Cardiologist if you have a PFO identified in your heart, Haemotologist if you have any blood clotting recurrences, Speech Therapist for speech or swallowing issues, Social Worker to assist with managing adjusting to things back at home and in the community or demands caring for young children if you are in this position. 

There may be additional therapies that can help as time goes on, Chinese Medicine, acupuncture for energy, remedial massage, equine assisted therapy, animal therapy, music or art therapy. Yoga, gym etc. Joining different research projects can also give you access to different therapies being tested.

Just keep looking forward and work out what you need at you go along. Speak with your GP each time you identify another area the requires recovery support. Good luck. Don’t accept no for an answer, pursue what you need for your individual recovery.

Hi Em, so sorry to hear what happened to you. It’s such a stressful thing having a new born and dealing with a stroke. I had an ischemic stroke at 35 weeks pregnant and had to deliver via c section. I really struggled with recovery whilst fatigued. I was also somewhat traumatised, for lack of a better term, from the stroke. 

I had difficulty with where to next. I saw my GP and he referred me to a private neurologist. My stroke was quite minor but I had some deficits on my left side. Tingles, tightness and I felt the brain fog just like you. 

when I saw the neuro, they couldn’t do much. They tested my neurological function and we discussed my concerns. 

I also linked up with a private neuro physio. They gave me some sensory exercise. 

They might be able to help with exercises for your eyes that might assist with your headaches. I can’t say for sure. I also got some as I had dizziness when turning my head a certain way. 

I guess what I am trying to convey is that take control of your recovery and speak to the experts in the area. They may be able to provide some peace of mind for you. Time also helps too. 

all the best with it all. 

First up is to see your GP. Ask abut being pout on a "chronic condition" plan with Medicare. This gives you some referrals to allied health services, so you won't have to pay for physio etc. Also ask about any local support services you can access to help you post-stroke and post-birth. They should also be able to advise you on follow up tests to determine the cause of the stroke and how to manage any risk factors. I also had a cerebral haemorrhage while recovering in hospital from emergency open heart surgery. When I eventually saw a neurologist and had 2 brain MRIs, no cause could be found. That eased my worries about "what if I have another one", since the first one caused me enough problems and I didn't want a repeat.