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Stroke is one of many conditions that can lead to seizures, or epilepsy. You may think of these as ‘having fits’. In the UK this condition affects just under 1% of the population. Around 5% of people who have a stroke will have a seizure within the following few weeks. These are known as acute or onset seizures and normally happen within 24 hours of the stroke.

The good news is that your risk of having a seizure lessens with time following your stroke. But, you’ve really got to take care. I see people regularly who have fits for the first time. It’s never fun, but luckily, as someone who has had controlled epilepsy for over 20 years I know exactly how to identify these very early (it’s not that hard really). Quickly get the person to the floor, gently, into the recovery position and call for an ambulance. If you have a list of all their medications on hand to tell the paramedic, that would be ideal.

You are more likely to have had one if you have had a severe stroke, a haemorrhagic stroke or a stroke involving the part of the brain called the cerebral cortex. My own epilepsy came only after subarachnoid haemorrhage, (an uncommon, very serious and often fatal type of stroke caused by bleeding on the surface of the brain)

The causes of seizures are complex. Cells in the brain communicate with one another and with our muscles by passing electrical signals along nerve fibres. If you have epilepsy this electrical activity can become disordered and a sudden abnormal burst of electrical activity in the brain can lead to a seizure.

There are over 40 different types of seizures that can occur, but the most common ones are partial seizures or generalised seizures.

Partial or focal seizures only occurs in part of your brain. You may remain conscious and aware of your surroundings during a partial seizure (called a simple partial seizure) or you may become confused and unable to respond (a complex partial seizure). The symptoms you experience during a partial seizure will depend on which part of your brain has been affected. You may feel changes in sensation such as a tingling feeling, which spreads to other parts of your body.

Commonly people experience a rising feeling in their stomach (a bit like when you go over a humpback bridge). This is called an ‘epigastric rising sensation’. You may also experience uncontrollable stiffness, twitching or turning sensation in a part of the body such as your arm or hand, and/or disturbances in your vision, such as seeing flashing lights.

People can actually be taught to ‘ward off fits’! I learned the hard way how to do this. It’s a real trick of the trade you can use as a stroke survivor! Jut get in touch with me and I’ll tell you how I do it. 2004 was the last time I personally had a fit. I developed a 3-stage process which is remarkably successful. Part psychological and part-physical, it just works for me and might work for you too.

Since 2004 and 2019, I’ve controlled my fits and manipulated the levels of the drug in my body so that it can cope with changing body-weight. Putting on muscle was the main reason why I had to increase the dosage of my pills. More on anti-convulsants (or anti-epileptic drugs) below.

Generalised seizures involve both sides of your brain. There are several types of generalised seizures. Tonic-clonic seizures are the most common and widely recognised type. During a tonic-clonic seizure you lose consciousness, your muscles go stiff and you usually fall backwards. I used to fall forwards. I know this because I used to wake up not knowing what had happened to me, but seeing a massive carpet-burn on my forehead. You really do basically stiffen up and go down like a brick! 

After losing consciousness, your muscles tighten and relax in turn, causing your body to jerk (convulse). Your breathing may become difficult and you may lose control of your bladder. This convulsive phase of the seizure should only last a minute or two.

Other types of seizures include tonic seizures (where your muscles go suddenly still but you do not have convulsions), clonic seizures (you have convulsions but no muscle stillness beforehand), atonic seizures (you suddenly lose all muscle tone and go limp), or myoclonic seizures where you experience a brief muscle jerk similar to the jerk you sometimes get as you fall asleep. A secondary generalised seizure is when a partial seizure spreads to both sides of the brain. Stroke-onset seizures are often of this type.

Most seizures stop by themselves and last between two and five minutes. After a seizure you may feel tired or confused. The time it takes to recover varies from person to person. Sometimes after a seizure associated with stroke, you will have temporary weakness, which may last for a few hours.

If a seizure lasts for 30 minutes or longer, or you have a series of seizures without consciousness being regained in-between (status epilepticus), your body struggles to circulate oxygen properly and this is an emergency. Your family or carer should call emergency services immediately if you have a seizure that lasts for more than five minutes or if one seizure follows another without you regaining consciousness in-between.

IMPORTANT: If you think you have had a seizure, and are not in the hospital, you should see your GP immediately, and then referred as soon as possible to a specialist. You may not be able to remember the seizure so if someone else witnessed it, it might help if they see the specialist with you. The specialist will ask you questions about what happened. This may be enough to make a diagnosis. However, further tests may be needed, particularly if the seizure did not involve convulsions.

You may have an electroencephalogram (EEG), which involves placing electrodes on your scalp and is painless. These measure electrical activity in your brain and can identify any unusual patterns. An EEG only shows what is happening in your brain at the time it is done, so a normal EEG does not necessarily mean that you do not have epilepsy.

It’s a good idea to keep a ‘seizure diary’ with the dates and times of your attacks, what happened, and any possible triggers, such as alcohol, or stress. It means you can narrow it down to factors such as: ‘am I missing taking my pills by half an hour to an hour?’,  or ‘have I just been in very stressful situation?’ Both of these were big triggers for me. Flashing lights can be a trigger (photosensitive epilepsy) though this is not common as people think.

There is currently no cure for epilepsy, but medication can usually control seizures and allow you to lead a normal life. Which treatment you have will depend on the type of seizures you’ve had, how frequent they are, other effects of your stroke, for instance if you have problems swallowing, and any other medication you are taking.

Anti-epileptic medications (AEDs) work by preventing excessive build-up of electrical activity in the brain, which is causing the seizures. Unfortunately, the normal activity of the brain can be affected, leading to drowsiness, dizziness, and confusion amongst other side effects. Once your body is used to the medication, these side effects may disappear.

Your doctor may start you on a low dose and increase it gradually to reduce the chances of unpleasant side effects. If you can’t tolerate the medications, then you must tell your GP as there are choices of treatments, and the science is progressing all the time. There are many safe and reliable AEDs available, and you will find one that suits your individual case.  The choice of AED used for you will depend upon your type of epilepsy, sex, and any other medications you may be taking. I take the above medication: the good thing about these is you can get the Chrono-Release version, which release the medication throughout the 12 hour intervals per day you should take them.

Many people, including myself, get back to extremely busy schedules after stroke, and simply take their pills. One tip is that often AED dosages are often quite highly-tuned. If you put on bodyweight, you may begin to have enough in your system without realising. This was a total ‘game-changer’ for me and has been so for many others. It’s also a good idea, if you are having fits, to get a medical bracelet which identifies you as someone who experiences epileptic fits..

Important tips:

1. Develop your own ‘early-warning system’ and find out how to ward off fits as they come on.
2. Find an excellent Epilepsy Consultant: they are worth their weight in gold.
3. Never suddenly stop taking your medication: this will cause you to have seizures and possibly develop prolonged seizures (status epilepticus). Although studies show that the risk of having a seizure-related accident decreases as the length of time since the last seizure increases, there are still a great deal of road traffic accidents found to have been caused by people coming off anti-convulsants. Medication should only be stopped with medical supervision.

So, what’s the point of task-specific practice and why should you do it? Dutch researchers (Kollen, Kwakkel & Lindeman) way back in 2006 reviewed ALL available published clinical stroke rehabilitation trials, of which at the time of writing there existed 735. They selected 151 studies including 123 randomised controlled trials and 28 controlled trials. In their consideration, the rest either did not meet the inclusion criteria or lacked statistical and internal validity, reflecting the poorer methodological quality of many of the clinical intervention studies under consideration. The Dutch researchers concluded in their analysis that traditional treatment approaches induce improvements that are confined to impairment level only and do not generalise to a functional improvement level. In contrast, they concluded that evidence existed that: ‘more recently developed treatment strategies that incorporate compensation strategies with a strong emphasis on functional training, may hold the key to optimal stroke rehabilitation’.

In summing up their findings, they reported that ‘intensity and task-specific exercise therapy are important components of such an approach’. I have found that there is a strong case for implementing and balancing both into an Approach, with the addition of strength training. It’s what I did (and still do) to retrain, manage and ‘negate’ my own physical limitations. And it is how so many others are being taught how to get some significant results in terms of upper limb capacity AND performance (in ADLs).

Although still under investigation for strong evidence of efficacy for stroke rehabilitation, task-specific practice can be said to be one of the best weapons we have to help retrain the brain. It means simply to train the action to be performed in a natural environment. For example, if you wanted to lift a mug and drink from it, you should take a mug and practice lifting and drinking from it, over and over again … and attempt to improve progressively and consistently. The retraining that you are going to do holds this method up as a very BEST paradigm to be following, and one around which lots of other improvement interventions can be introduced/tried, from active orthotics to technology and drugs.

Functional task-practice must not only reinforce recovery milestones, such as sitting balance, standing upright and the ability to walk but also tackle behaviours that are introduced after stroke. You need to be doing the task you want to do. So, for those with significant spasticity in the upper limb, to retrain the ability to open a glasses case to get your specs, for instance… you practise opening up a glasses case.

Get a ‘How-To’ Video. This online DVD about Real-life Upper Limb Self-rehab will show you lots of ways for people who are retraining at home to ‘retrain’ for normal tasks which involve reaching, grasping and releasing.

Task training is critical because it will ‘force’ you to practice using your more-affected limb. This is why the Evidence-Based Review of Stroke Rehabilitation (EBRSR) concludes that constraint induced movement therapy (CIMT) in clinical settings, for those who meet the qualifying criteria, shows strong evidence of benefit in comparison to traditional therapies in the chronic stage of stroke. CIMT is a great example of task training for the upper-limb. 30 to 66 % of stroke survivors report no longer being able to use the affected arm despite trying to rehabilitate and are in danger of avoiding using it (‘learned non-use’ or inattention/ neglect of the limb). Several factors might explain this phenomenon. First, you may see no reason to try and use your bad arm and therefore remain ignorant of underlying motor potential. Second, you may not know how to use any emerging isolated movement for functional performance.

In fact, emerging movement often overlooked: it is considered non-functional. But this is wrong. You actually need to try and regain an increase in active range of motion (AROM) in as many planes and pivots as possible.  Increase in non-functional AROM increases strength and muscle bulk, encourages muscular activity which promotes vascular return, decreases the potential for soft-tissue shortening, and damage with resultant pain and stiffness – and increases osteoblastic activity on the affected and often osteoporetic) side.

What you need to know is that now, eclectic therapists are seeking to fight on two fronts: teaching compensatory strategies for the sake of function and training the affected side to re-establish cortical control over the affected extremities by the ‘original’ neurons. This means that actually, compensatory strategies are not ‘bad’. Rather, they are now being recognised as critical to recovery.

Indeed, as action control is incrementally unmasked on the affected side, emerging movement should be recognised, celebrated, encouraged and built upon. The trick is making sure that compensations & recovery are both worked on, although the work will be separate in the short-term. In the long-term they will meld indistinguishably.

So, try to do MORE with your more-affected upper limb by yourself each day (ie work towards a new goal, and check retention during your ADLs constantly afterwards (because you can lose ability, just like strength (which is shockingly easy to lose). Repeated attempts to use your affected limbs in training creates a form of practice that can potentially lead to further improvement in performance. The ideal is to find oneself in a ‘virtuous circle’, in which spontaneous limb use and motor performance will reinforce each other and re-teach your body to control the position of an affected limb.

In formal retraining situations it is important to advance quickly toward practice of whole tasks with as much of ordinary environment context made available as possible. For example, say, a goal of yours is to improve the action control of your paretic foot for being able to cope whilst walking outside on the pavement, unsupervised and with no supports. The best retraining you can get is to ask a trainer or friend to plan a route for you to go with him or her, so that you can trial it safely and under careful supervision. You can work on leaving your stick and/or supports behind or using/wearing them according to your current levels of ability.

Many stroke survivors can be assisted to retrain by advising them to have one place and a set amount of times per week in which they devote time to their retraining. I tend to promote the importance of setting up a small matted ‘training area’ in your house, which needs only to be a few square metres wide. You also need a chair and a small table with a task-board, more advanced challenge board and other small items on it.

You need to finding your own task specifics, according to your goals. You also need to work on ‘close-simulations’. Even though simulations are probably not as effective for motor learning as performing the actual task, and remember, we are after significant performance improvement via task practice, you can see that this approach gives you some great advantages. It keeps you in the training area, keeps you working on-task and keeps you safe. And then outside of the training area, you need to make an effort to practice the tasks (or the components of them that you can manage), as part of your ADLs, noting changes when you can.

One great example: I created ‘DJ-Therapy’ to get my upper limb working again. I basically made up a hugely successful paradigm which was suitable for me. How I did it is all listed in The Successful Stroke Survivor.

You can read how I started it ‘off-decks’, then used the decks themselves to absolutely superb effect – ‘training’ 5 or so hours per day. It was never ‘training’ per se, for me, however.

Making training ‘not training’ is one of the biggest secrets to getting optimal success with upper limb function. I wish more people would have a go at this idea. Have a think about what might be suitable for YOU to keep YOU practising and interested.

Messages from this post are:

• Get clued up to understand how to set up a training methodology (a good number shown on these DVDs, for example)
• Get some help from a physio, OT or trainer.
• Perform as many specific, whole tasks of your choice inside a safe training area as you can.
• Work on the ‘edges of your current ability’
• If the task is not appropriate to perform in your training area, you should try and to practise for it using close simulations in your training area first.
• Progress on task performance must consistently be checked outside your training area.
• If you can, you should try and pinpoint new action control in your ADLs to something you are doing in retraining
• And repeat! Many many many times. And have fun with it. Make things. Create.

• Investigate to see if you can find any appropriate technology for stroke rehab.
• For upper limb problems, if in England, see if you can be referred into the Queen Square Upper Limb service in London for an intervention (this requires a referral from your GP).
• Also for upper limb problems, get assessed to see if any anti-spasticity medications are appropriate and could help.