Complex Partial Seizure - misdiagnosed

[caz1979]

Hi All,

I am new here. My husband is a truck driver and has had a few funny turns over the last few years, bouts of dizziness, tunnel vision, sweating, general feeling of fear not able to get his head together. I have always thought it was a panic attack because my husband suffers with anxiety.

About 4 years ago he woke up one morning and had a fit of coughing, he had a chest infection at the time and suffers from asthma. He was coughing so much he fainted. We went to the doctor who told us it can happen to people sometimes when they have a fit of coughing when they pass out.

The approximately two years ago he had a very busy time in work and was getting off a boat to load a trailer and straight back on the next boat - this time he came over funny while driving and had to pull over it lasted a couple of minutes and he never lost consciousness. He was very stressed with work at the time and sleep deprived.

Then back in September he got off a boat again after a very busy week, hadnt had much sleep and as he was driving up the road he came over all funny again, tunnel vision, everything seemed distorted and weird. He phoned his mother and spoke to her on the phone explaining his symptoms and again didnt loose consciousness.

This episode scared him so he made an appointment for an optician as he felt he needed new glasses. On the way he was at the GP to renew his prescriptions and mentioned this episode to him and BOOM that was it!! He was told he couldn't drive and referred to a consultant.

We attended a neurologist in Dublin the following week who went through some questions with us - he asked me about the first episode when my husband had to coughing fit - as I had been there when it happened I told him that my husband had seemed unsure of what had happened when he woke up, was out for maybe 5 seconds and was confused what had happened but he wasn't confused about who he was or where he was.

The neurologist asked if there was anyone in the family with epilepsy - we said his cousin has it (but at the time we didn't realise his seizure was from drug taking)

The consultant diagnosed Complex Partial Seizures and that was that - my husbands career was over - no driving a car for at least one year and no commerical vehicle for 10 years!!

My husband has had an EEG - normal and MRI Epilepsy Study again normal and the consultant is still saying he cant drive - he said we must air on the side of caution!!

My question is why is he so sure its a seizure?? It could be a problem with my husbands heart or my original feeling of a panic attack??? Are we entitled to get a second opinion or will someone automatically side with the original diagnoses.

I feel totally lost - I dont know what I can do to help my husband he is distraught as trucking was his life. His real passion. Now its all been taken away. Could this consultant be wrong??? I just dont know what to do next.

In the past with the recession we had fallen into arrears with our mortgage and we were just starting to come out the other side and now this has happened and we are in trouble again with the banks and they are refusing to help us because they say our income is so low now we cant get help under their resolution programme!!

Please any advise would be greatly appreciated.

Caz

 

[Porkette]

Hi Caz,
Welcome to CWE! Everyone here has been a great friend and big help to me.
I'm sorry that you and your husband are going through some hard times right now. My advice to you is to have your husbands family Dr. refer you to see an Epileptologist these Drs. specialize in epilepsy and can do other detailed tests to find out what's possibly triggering seizures for your husband.
I had an MRI and e.e.g and it didn't show a lot of damage on my brain because the damage was to deep in for the tests to show anything. I then had a spect and pet scan test done along with a wada test and this showed a lot more detail of what was triggering my complex parital and absence seizure.
Stress, and lack of sleep are the 2 main things that can trigger seizures for a person. If you husband has anxiety problems that can sometimes lead to a seizure for a person. I found taking vitamin B12 1000 mcg. once a day a big help reducing my seizures. Also tell your husband to cut back on the carbs and starch foods and start eating foods high in fat this will build up ketones in his body and the ketones help reduce the seizures. I wish you and your husband the best of luck and May God Bless the Both of You!

Sue

 

[Nakamova]

Hi Caz, welcome!

If you feel uncomfortable with the diagnosis, try to get a second or third opinion. I realize this may not be easy. We have members in Ireland, and from what I understand there aren't enough neurologists to go around. A long-term video EEG might also shed some light, but keep in mind that a normal EEG doesn't rule out an epilepsy diagnosis. Partial seizures can be especially frustrating since they can be too fleeting, or occur too deep on the brain to register on the test. Since you suspect your husband may have heart issues, perhaps you can see a cardiologist who will be able to help.

That said, what you describe -- "he came over all funny again, tunnel vision, everything seemed distorted and weird" -- does sound like a partial seizure. And any condition where there's confusion -- even it's only a matter of a few seconds -- can be dangerous for driving. So as hard and as unfair as it seems, the consultant is right be cautious.

I know how hard it must be to get this diagnosis. I hope for your sake that it is wrong. And I hope the two of you can find away to cope with the consequences.