Ranting and raving like mad

[toro]

This is going to be a bit of a rant, but it's a long story and it does have a point.

Essentially I feel like I'm treating my own disorder. I'm 30 and have been taking 300~400 mg of dilantin for the last two years with no TC seizures ever since. I've had auras occasionally and recently discovered that I have absence seizures as well. The people around me didn't realize I was unconscious when I was doing them.

In order to treat my auras and my absence seizures my neurologist has been slowly upping my dilantin. In the process I had one blood test and after not being contacted for a week, I contacted them and was told that "everything was alright" because my dilantin level was still within a healthy range. I then pointed out (as I was not asked) that my symptoms hadn't changed at all. So they upped my meds a little and did another blood test. After not hearing back for a week we contacted them. Again I was told that everything was OK because my blood level was healthy. And again, I pointed out, after not being asked, that I was still experiencing the same symptoms.

My wife and I went there in person and explained that I was still having absence seizures and in the process was apparently not breathing for 30 ~ 40 seconds. She brought a video with her in a sealed envelope with a page-long letter explaining the circumstances:

As always, I woke up in the middle of the night. I sat up half-way. I started staring into space, licking my lips, gulping, all while my face was rapidly turning red and I was moving my pillow slowly. The entire time I don't respond to what she says and I don't remember a thing. After 30 seconds I closed my eyes and fell back to bed and went to sleep).​

Occasionally these happen when I'm awake. Once it happened in a period where I was keeping a record of time actually and I still did not realize it happened until my wife told me later. Also, my coworker just told me he observed me having one. The envelope was addressed to give to my doctor.


So this is what this week has been:

A day later I received a call and was told he wanted me to wear an ambulatory EEG for two days, so I did. It turned out I ended up having a large number of auras and four absence seizures (which usually only occurs in small bursts once a month or when I'm under a huge amount of stress). Meanwhile I was walking around work answering questions, stopping conversations, having friends want to take pictures with me and feeling like I wanted to just hide at my desk all day because I was wearing 25 electrodes on my head at work and being told I wasn't allowed to put anything on top of it (bandages, wraps, handkerchiefs, etc.), shower, or change my shirt. I wanted to go to work because I was also told I should try and go about my days as normal as I can.

My wife then contacted my neurologists' office yesterday to set up an appointment for me. She was told that because my doctor looks at the EEG personally we would have to wait to schedule an appointment until after he read the results. Furthermore, because he was completely booked, the soonest they would be able to contact her to schedule an appointment would be late February. That is: the earliest they would be able to talk to us for the purposes of scheduling an appointment would be in two and a half months' time.

My wife asked about the video and the letter because she was worried that the dilantin increases weren't affecting my absence seizures as they weren't going away. The response she received from the nurse was that the doctor had looked at it and said "it looked like I was getting ready to go to bed". When she said that it was an absence seizure and asked if he read the letter the nurse responded by saying that the doctor said he "wasn't very impressed".

I know this is what was said because my wife, as all good attorneys, takes notes when talking about important matters in case they tells us what new meds we need, what tests need to be done, when the appointment will be, etc.

This is where my overreaction may set in... But I need to get this out. Please bare with me and I really do mean this: if I'm being a jerk or overreacting I really would appreciate being told so.

I mean... WHAT THE HELL IS WRONG WITH THESE PEOPLE?!

"Not impressed?" What am I supposed to do? Take half a dozen shots, skip my meds and drop on the ground and have a TC for him?! Do they think I'm trying to fake this?!

They have made many more screw ups over the last year: taking a blood test that said I had about 50% the minimum level of dilantin in my blood and not (1) contacting me four four months and (2) sending me the results of the blood test. Being told I was on a patient waiting list then, after contacting them two months later being told my name wasn't on the list. The list goes on.

My GP is going to give me a referral for a new neurologist or maybe an epileptologist early next week as we'll need to drive 3 hours to see whomever it is. But what do you guys think about all of this? Am I just angry because of an incompetent practice? Am I overreacting? Is this balls to the moon insanity? What would you do regarding them? Contact the AMA? The BBB? Get the doctor on the line and complain directly to him? Forget about it, get your records and move on?

 

[Fedup]

Toro I am sorry for what you are going through, I do not live in America but from what I read here at C.W.E the same system is at work. My story is much the same in ways. Around six months ago I had my neuro appointment, this was ok, went in the epilepsy nurse seen me first, told me how I should feel, look like and so on (I lost the head with her and I could not repeat here what I said, not nice) then went in to see the neurologist, my wife came with me. There was the usual and then I was told I was being put on a new drug and been taken off one I was on that it was poisoning my system.

I went home got the new drugs and after 3 months went to see my doctor about coming off the old tablets, I was then called a liar and told nothing like that was said and I was put on the new ones to see how I would react to them (this is where I felt stupid and like a guinea pig). I went home very angry and stunted at what was said, I told my wife what was said when she came home and she went bellistic picked up the phone and rang my doctor and told him she was there as well when all this went on, she then went on to give him a lecture and not very nice. This is only half of it.

No you are not being a jerk or over reacting. As for what is wrong with these people the only conclusion I can come up with is the fact they think they are GOD and what they say is final it does not matter about you and me. As far as they are concerned they know us better than we do. I hear you when you talk about the screw ups and blood tests not to mention the appointments (nearly 1 year before I can get an appointment). I went for an MRI the results came back and I got a phone call telling me the results were not good and I should go up to see them first thing in the morning. I did to be told more tests had to be done it looked like I had a brain tumor, wrong MRI they had (thankfully). Then got sent to a cardiologist the list goes on.

So most definably you are no jerk or over reacting, you are being normal and concerned for your own health. Moving on may be the best choice there is unfortunately I do not have that choice and am stuck. Rant all you want it helps at the best of times.

 

[Nakamova]

Unfortunately what you describe seems all too common. Sometimes the doctor is at fault -- arrogant, dismissive, incompetent, apathetic. Quite often the overall healthcare system is at least part of the problem: Under the current constraints, doctors and their staffs are squeezed for time and overbooked, and as a result are under-responsive to the average patient. If there are any inherent problems with the doctor or his/her office, the current system magnifies them and makes them worse.

My GP is going to give me a referral for a new neurologist or maybe an epileptologist early next week as we'll need to drive 3 hours to see whomever it is.

I think this is the best response -- to direct your energy towards finding the best collaborator for your treatment. It might give some satisfaction to talk to your current neurologist or write him a letter, but don't expect it to make a real difference. There are doctor-rating websites where you can post your review, and if the neurologist has a supervisor, you might consider letting them know about your negative experience.

BTW, Dilantin isn't considered particularly effective against absence seizures, though it might help with the partials. Dilantin can also be problematic for the teeth and gums, and for bone health, so you might want to have a conversation with your new neurologist about trying a different medication.

Best of luck to you, I hope the new neuro turns out to be a keeper!