Question
My wife, who is in her mid forties and has had moderate to severe ME/CFS for over 10 years, recently had a very strange episode where she started shaking and lost consciousness for a short while. She was taken by ambulance to hospital where the doctors thought she may have had an epileptic fit. She was discharged the following day and then saw a neurologist who has arranged for investigations – including an MRI scan – as there is still some uncertainty over whether this was an epileptic fit. Are fits more likely to occur in people with ME/CFS? And if so is there any specific form of treatment?
Answer
Firstly, anyone with ME/CFS who has any sort of episode that is suggestive of a fit/seizure, and has never had one before, must be properly assessed by a neurologist. This will involve taking a careful history, a thorough neurological examination and having an MRI brain scan, and an EEG (to measure brain wave activity) – as has been happening to your wife.
If no explanation can be found after a thorough assessment, and a diagnosis of epilepsy, or another neurological cause, has been excluded; it is possible that this sort of episode may be linked to ME/CFS. This is because while epilepsy itself is not more common in ME/CFS, a small minority of people, normally those at the severe end of the spectrum, have what are called ‘atypical convulsions'.
Dr Shepherd was part of the 2002 ME/CFS Working Group Report to the Chief Medical Officer that examined neurological symptoms in people with severe ME/CFS. This is the conclusion that we inserted into the section (4.2.1.2):
“In a minority of severely affected patients, serious neurological symptoms include:
- double vision,
- blackouts,
- atypical convulsions,
- loss of speech, and,
- loss of swallowing necessitating nasogastric feeding.”
I hope this information is of some help and that your wife can soon get a definite answer, along with appropriate drug treatment if this is necessary, once the investigation results have been reviewed by the neurologist.
NHS: Epilepsy
Epilepsy is a common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works. They can cause a wide range of symptoms. Epilepsy can start at any age, but usually starts either in childhood or in people over 60. It's often lifelong, but can sometimes get slowly better over time.
Symptoms of epilepsy
Seizures can affect people in different ways, depending on which part of the brain is involved. Possible symptoms include:
- uncontrollable jerking and shaking, called a “fit”.
- losing awareness and staring blankly into space.
- becoming stiff.
- strange sensations, such as a “rising” feeling in the tummy, unusual smells or tastes, and a tingling feeling in your arms or legs.
- collapsing.
Sometimes you might pass out and not remember what happened.
When to get medical help
See a GP if you think you might have had a seizure for the first time. This does not mean you have epilepsy, as a seizure can have several causes and sometimes they're just a one-off, but you should see a doctor to find out why it happened. Find out more about the tests for epilepsy you might have.
Call 999 for an ambulance if someone:
- is having a seizure for the first time.
- has a seizure that lasts more than 5 minutes.
- has lots of seizures in a row.
- has breathing problems or has seriously injured themselves.
- Find out what to do if someone has a seizure.
Treatments for epilepsy
Treatment can help most people with epilepsy have fewer seizures or stop having seizures completely. Treatments include:
- medicines called anti-epileptic drugs – these are the main treatment.
- surgery to remove a small part of the brain that's causing the seizures.
- a procedure to put a small electrical device inside the body that can help control seizures.
- a special diet (ketogenic diet) that can help control seizures.
Some people need treatment for life. But you might be able to stop treatment if your seizures disappear over time.
More information
- The 2002 Report of the CFS/ME Working Group to The Chief Medical Officer can be downloaded here.
Related Categories
MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.