Advice

Hi

 

ive joined for advice for my husband who in 2014 had a seizure then in may 2015 a second one and was immediately diagnosed with epilepsy as he bit his tongue etc. 

More recently he's been having seizures that the epilepsy consultant doesn't recognise.,I should have explained heart issues run in his family so I have been asking all along could this be heart related until 3 weeks ago he was finally fitted with a 7 day heart monitor. I handed this monitor back on late Thursday afternoon and early Friday morning we got the call to go to hospital, apparently my husbands heart was pausing for 20 seconds so off to theatre for a pacemaker.

the cardiologist explained he didn't think my husband actually had epilepsy but his heart could have been causing seizures. He asked what investigations were performed to diagnose hubbys epilepsy and our response was none which he seemed shocked at.

roll forward and last week he started with strange all I can explain is imagine my husband having a pause button and it being pressed for roughly 15 seconds, well that's what's happening. He is on high dosages of levetericitam( keppra) and reading up on this medication, this is one of numerous side effects. He constantly feels drunk/ spaced out.

The cardiologist has asked for his neuropsychologist to urgently investigate my husband and to possibly remove this drug to find out once and for all Is the epilepsy. 

 

Has as anyone else been through this as this majorly affected both of us as my husband was a heavy goods driver of 32 years, he lost his job and hasn't been able to work since so we lost our home. I lost my job in 2016 February as I struggled caring and working full time. I actually suffered a subarachnoid haemorrhage in November last year so we now both struggle.

 

Thanks for reading and letting me join this site

 

 

Wendy

3 Comments

Wendy

by The real Patch - 2017-09-26 13:03:40

Welcome to you and your husband, I'm so sorry you had to join this group but hopefully we can provide some support to help you guys on this journey.

Some 35 years ago I was misdiagnosed  with asthma and treated for years for that condition. They now believe that I had CHF all that time and because it went untreated my heart is a total wreck. Hard at times not to get angry about it, but nothing will change so I deal with it.

Sounds like they need to wean your husband off that medication and sort out what is going on. Remember the treatment should not be worse than the illness.

I would suggest you investigate two things if you haven't already;

1. Contact an attorney about the misdiagnosis

2. Check into disability through Social Security for yourself and your husband

Good luck to you two and we are the ones who're thankful you decided to join our family

"Seizures' and the heart

by Selwyn - 2017-09-26 13:19:15

It is often difficult to distinguish the cause of a seizure. I have seen folk that have fainted ( vaso-vagal attack) and  have a seizure when kept in the upright position. Cause? The brain is starved of oxygen ( due to decreased blood flow). In the same way, a lack of circulation, such as a cardiac pause of some duration, may result in a seizure The  onset of a stroke may be indicated by a seizure (by the same mechanism of oxygen starvation). 

The diagnosis of epilepsy- multiple siezures, with their cause within the brain, should never be made on the history alone. I share your consultant's surprise that this diagnosis has been made without investigation!

It is hard to distinguish between the causes of seizures by eye-sight alone- a friend of mine had a seizure in our living room ( 1st onset) and we thought ( I include his experienced nurse, wife) he had had a TIA or Stroke. Eventually, turned out to be epilepsy. 

Keppra is a drug that can have serious impairment of your mental faculties (listed are confusion, hallucinations, loss of balance or coordination,extreme drowsiness, feeling very weak or tired, muscle weakness etc.). I think your cardiologist is right in advising  stopping the medication and perhaps at the same time seeking to have further investigation of his seizures. It may turn out to be that the whole affair of the seizures were cardiac in origin. 

 I hope this helps to explain what may to be the case here.

Kind regards,

Selwyn

Advice

by Misty62 - 2017-09-27 12:50:45

Thanks for your replies 

Hes had his pacemaker checked again and it's working fine so now finally after a few frustrating days managed to get an urgent appointment with neurologist for this coming Monday.

 

really appreciate your response 

Wendy

You know you're wired when...

You participate in the Pacer Olympics.

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