You Have To Have A Sense Of Humor

It seems that I can’t manage to get sick when there’s actually going to be a doctor available to help me. My recent episode last Wednesday night meant that I’d spend a long four day weekend before I could talk to my neurologist. So…I called my neurologist’s office first thing this morning and the first voice that I heard was the receptionist. Now, one of the lessons that I’ve learned over the course of the last two years is that these are people for whom you don’t hold high expectations….but perhaps you’ll be pleasantly surprised!!! 🙂 (Ever the optimist) Well…this morning’s conversation began with…”Hi! This is Carrie Davis and I need to make an appointment to see Dr Heide. I had a partial seizure last Wednesday and he also wants to follow up on some new medication that he gave me.” The voice on the other end of the phone sighed and said, “Huhhhh! Well! He’s very busy, you know! Have you been in to the clinic before or have you just been to the ER?” She sounded as if she wished all these seizure patients would quit calling on Monday mornings and ruining her day! I stared at the phone for a moment, calmed myself, and hoped that she could forgive me for troubling her on a Monday morning with my phone call about a seizure that I’d waited four days to talk to someone about. The earliest she could get me in was next Monday but she would pass the message along and someone would give me a call. Ten minutes later I got a call and an invitation to come right in.

I discussed my episode with Dr. Heide and he wasn’t certain that it was an autonomic seizure but he couldn’t rule it out. He said that they’re rare. I asked if it could have had something to do with the vagotomy that I’d had during my partial gastrectomy a year ago. (The vagus nerve ran through the tumor in my stomach and had to be removed) “Yes” he said “it could have been something related to that, in which case, there’s nothing that we can do about it.” The symptoms were similar to dumping syndrome (heart palpitations, sweating, shaking, dizziness, disorientation) but without the subsequent bowel effects:  more dramatic above the waist but without the symptoms below the waist that I’m familiar with with dumping syndrome. We discussed the options, which included sticking me in a hospital for 3 – 5 days and hooking my brain up to a bunch of monitors to see if there’s anything going on in there (not too appealing!) but for now I will stay on 1500 mg of Keppra, twice daily and 50 mg of Topamax twice daily and we’ll see how my body continues to adjust to the Topamax.

I didn’t like the Topamax at first. I started out at 25 mg twice at day and lost 3 pounds in the first 24 hours. I’m a size “0” and I don’t have a lot of extra pounds to lose so this was an immediate concern. Topamax also makes the patient more prone to kidney stones so its important to drink lots of fluids and I was making an extra effort to do this. In spite of this, though, I wasn’t peeing much…which was a concern. Then there was the bowel situation. After my partial gastrectomy, eating healthy, getting enough nutrition and keeping things moving is a full-time job for me and anything that upsets normal function makes it harder for me to function. (LOL! Look at that! I found relatively pleasant way to put it!) 🙂 So…for the first week on Topamax, I was having “plumbing issues”….and no improvement in my head….and I wasn’t certain that this stuff was doing me any good. Next? Then my brain decided to “reboot”* and by the weekend I started to feel a little better. For the next six weeks, I’ll continue to give Topamax (plus Keppra) a try and we’ll see what happens….

…..because beyond this point…..”there be dragons……”

*A friend asked me to define “reboot” earlier today.  My first seizure was in February 2009 and my episodes have been occurring roughly every three months.  I’ve been feeling fuzzier in the head, dizzier, finding it harder to concentrate for the last month or so and I realized that the three month window was approaching…that’s why I agreed to go on another medication as my doctor suggested.  “I think that my brain is going to need to “reboot” again”.  After Wednesday’s episode, I felt a bit better this weekend.  Maybe I did just need to “reboot”.


2 thoughts on “You Have To Have A Sense Of Humor

  1. it is nice to see that you still have a sense of humour…. I hope things stay clear for you from now on, thinking of you as always

  2. I was reading your blog because my husband, age 34, just recently began having seizures. He had one grand-mal seizure and the rest appear to be autonomic. He will awake with a very rapid heart rate, funny feeling in his abdomen like he has to use the bathroom, bloodshot eyes, profuse sweating and sometimes his tongue feels strange or he will have a funny taste in his mouth. They are usually followed by an intense headache and general fatigue for the next 24 hours or so. These seem to be happening every 20-25 days. Does this sound like a seizure to you? Your blog is very inspiring, and I want to thank you for posting. I feel that the doctors never have enough time to listen to my concerns, so I have sought out other sufferers that could help shed some light on this. I just didn’t think seizures could be so systematic? Any advice you may have for me would be very appreciated. I will continue to read your posts. I wish everyone were as positive as you. Thanks again. Dusti Braschler – Missouri

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