Today must be a productive day. My house has spiraled out of control yet again, mostly because my body and mood are spiraling yet again. The owner/realtor is coming by tomorrow with the inspector for the final inspection before the place sells. It's not dirty (yes, it's dusty) but it's untidy and cluttered and there are piles of laundry that need to be folded and put away, and the floor needs to be vacuumed......I have a kitchen counter under the mail. Things like that. I DO feel better when it's cleaned up. So that will be the first part of today. Hopefully it won't take most of the day. Well the laundry washing will but that's always a Sunday thing.
The adventure with stopping the meds, aside from the glitch when I had the spinal tap, went surprisingly well. The topamax has held back the migraines as well as it ever has. I've gone through the Relpax as fast as I thought I would so that isn't a surprise.
I had the EEG and started on Zonagran after as my neurologist directed me to, and I've had some pretty nasty side-effects. At first I didn't realize that what was happening was related to the medicine because I had a temporary crown put in a few days before I started it. The temporary crown was plastic, and I had a plastic-y taste in my mouth and my teeth felt like they were coated in plastic for the first few days. I'd never had one before, and the people I asked about it said that this was normal and it could last a few weeks. WEEKS? It was horrible but if I had to deal with it, I'd deal with it.
After the first week it went from feeling like plastic on my teeth to feeling like a kind of waxy.... mucus and it wasn't just on my teeth but on the roof of my mouth and on my gums and tongue. I'd brush my teeth (and tongue, gums and roof of mouth) and it would go away for awhile but would gradually build back up. I also started to notice that all of my food had lost its taste. I'd take one bite and it would have some flavor for the first few seconds but as I'd chew the flavor would disappear. Everything tasted like waxy mucusy slimy nothing. The goo kept getting building up until brushing my teeth only helped for a couple of minutes. When I'd eat foods like bread they'd literally dissolve into mush like the goo was toxic, turning into the same slimy texture.
I found out when I saw an ENT a few months back that I have a deviated septum on both sides, and I thought that there must be something going on from this, combined with the temporary crown. I was going in to see Obi-wan for something, and I've noticed that my big toenail on my right foot has a little yellow spot on it so I showed it to him. Something normal! Toenail fungus! He gave me an Rx for it. I told him about the problem with the goo and he thought that I might have fungus in my sinus (sounds wonderful) and said that the med for the toenails would help it too.
I went to the dentist to have my permanent crown put in and I told them about what was going on. They were stumped. They said that the taste from the temporary crown usually only bothers people for a day or two, and they've never had anyone with the ....snotty little problem I've been having. The hygenist was great and said that it would bother her more than me - she's had to work around a lot worse before. So I got my permanent crown in and my teeth cleaned, and my mouth was STILL covered in goo.
I had a follow up with the neurologist the same day and I mentioned it to her. She said it's a side effect of the Zonagran! She wanted me to stick with it a bit longer. She was concerned about my not being able to eat though (I've had no appetite for several months), and said she thought it was being caused by the Phentermine that I'm taking for the neurally mediated hypotension. Phentermine is known as an appetite suppressant and I agreed to contact Obi-wan about cutting the dose in half.
I got back to work and called Obi-wan's assistant and let her know about what the neurologist suggested for the Phentermine. The goo build up was insanely bad that day, and the next was worse. I can't describe how bad it was, and I'd been woken up for two nights in a row with migraines. The meds that I'd taken for the migraines weren't making them go away completely and they were coming back later in the day so the Zonagran wasn't working all that well. I decided to look it up.
The side effect that I found that kind of unsettled me was anorexia. Odds of me having anorexia to the points of being a skeleton are slim, but I've been having a LOT of trouble eating. (I know.....how weird is that?) I don't remember to eat and I'm not hungry. If I can get a yogurt in at breakfast, an apple or some nuts at lunch, then remember to have something when I get home it's a good day. So taking a medicine that has one of the first side effects listed as anorexia, that isn't working well for me, that has ANOTHER side effect that's horrifically disgusting.....yeah. I decided I'm not taking it. I emailed her assistant (easiest way to get in touch with her) that I wasn't taking it and I was going back to the Topamax, and did she have any other suggestions? My follow up with her isn't until mid-June.
Did I mention it was doctor week? I'd seen Dr. Liptan the day after I saw the neurologist and told her about the goo and the conversation with the neurologist, and that she had said that I was having a side effect from the Zonagran. Dr. Liptan looked it up and found "taste perversion" as a side effect. *L* Gotta love that one! She leaned towards going off of the Zonagran so I do feel comfortable with my decision. She also recommended adding some probiotics as there could be some yeast going on in the sinus as well (sounds like it's a regular party in there) and that's an easy one so I've picked those up too.
I see a different ENT on Monday as the first one I saw wants to do some pretty radical surgery that I'm not comfortable with. I'm hoping he'll have some idea what's going on. I haven't seen much of a difference in the snotty little situation, but I've only stopped the Zonagran for four days and I'd taken it for almost two weeks. I don't know how long it takes to work its way out of my system, and I don't know if that's the only thing that's causing it.
Something reassuring for me is that I've been told by several doctors that there IS something going on. It's NOT all in my head, and it's not just fibromyalgia and chronic fatigue (not that those aren't valid and more than enough for someone to deal with). I don't know if they'll be able to pinpoint it with the testing or not. It's not my weight and I'm not imaging things. Finding out what's causing it all would be awesome, because then we could start treating it, if not fixing it. At least having people, reputable people in the medical profession, believe me and support me, makes an incredible difference.
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