I'm so glad to have found this forum. My husband sufffers from these FHM. Of course "I" just figured this out in the past two days and finding this forum has helped.
I know this will be a long story, but please bear with me.....I need to tell some one....Just a little history....my DH works for a major teaching university in the IT dept. so he see's doctors at the university which is normally great.
He's been treated for "seizures" for the past 9 years!! (I'm still pretty up set about
all this right now) He has not been having seizures!! He's been having FHMs!! You know just some quick addition in my head, we've spend over 20,000 on co pay for meds.......the wrong meds!! Any way like I said we've been having these for 9 years. My DH had heart surgery 9 years ago and had his aorta replaced, that's when it started, like the first week home from surgery. Unfortunately his heart surgeon died before we went back for his check up, so we had to see some one else....We told him about
the "episodes" and he just brushed it off and said he was healing well and it would go away. Well it never did. So my DH starting seeing the head doctor of neurology at the university. Well he diagnosised it as seizures and said that my DH PROBABLY had a small stroke during surgery and this is the out come from it......seizures.... This is the head of neurology, (our first mistake)(and a horrible learning exp.) in 9 years he's only scheduled 2 EEG's , 2 day, (one we just got home from), he's only checked my DH's blood that we remember maybe 4 or 5 times, (DH was up to taking 22 pills a day) which I've learned now should have been done at least every 3 to 6 months. 2 years ago, I thought he was having a stroke, ER time, 2 day stay in the hospital, diagnosis.....a migraine....I've been thinking every since then we might have been having migraines.....but the doctor didn't agree with me. The seizures were about
one or two a month, but when he would have one it would put him down and out for 3 or 4 days. Of course the doctor would blame these on my DH for maybe missing a dose of meds. Jan. 9th of this year the "seizures" started and did not quit.....I think my DH has only worked one full week since then. He sees the doctor in Feb., we wanted to be sure we could go in there and say he had missed no meds......So the doctor increases his current meds and gives him a new one. And as everyone knows it takes a couple of weeks to increase meds. Then told us to wait 3 more weeks and call back and schedule another 2 day EEG. (WOW second one in 9 years) Well his body
couldn't handle that, so I called the doctor back to see what he wanted us to do, I find out that the doctor is at a teaching seminar out of state.....and as soon as they could get intouch with him they would let me know....well I started taking him off the increased dosaged and the new med myself......we had been taking it for 2 weeks and no improvment. To try to make a long story short, he had a "seizure" during the test and the test showed NO sign of seizure activity, and the associate doctor making the rounds in the hospital said he believed that DH was having migraines......but he would have to confirm his findings with head doctor, so DH said he was taking himself off of all the seizure meds, the associate doctor said that DH couldn't do that with talking to the head doctor......now our Big mistake......since the head doctor has taught all the other doctors in our area, none of them wants to take DH as a patient, during the past years I've called trying to find a new doctor and when they find out why we want to change and who the other doctor is, they won't accept DH......I've started looking out of town.
At least I now know what's going on, FHM, .......and if we can see another doctor that's not associated with the university that DH works for maybe I can push the doctor more.
Thanks to everyone for taking time to read my rant! I'm still looking for information on this. So if anyone else can post links to anything they have learned or other forums I could visit I would very much appreciate it so very much.....
I wish you all good luck in dealing with this. It's very had to have this diagnosis and it's also very hard being the care taker for someone with this.....
peace, love and good health to everyone.......Candestarz
Post Edited (candestarz) : 3/29/2009 3:23:37 PM (GMT-6)