Increase dose

[Elsie]

Gee, I don't think I've had very good medical care recently. Almost 2 years ago I went to the lab for a test of my trileptal level. They did the wrong test, some sort of metabolite of trileptal instead of just a plain level test. My neurologist said oh, yeah, they did the wrong one...I'll have to see how that converts...and I never got the impression she actually followed up.

She said to get another test at my regular dr. / lab place when I had tests done there. Well, that was another year before I had tests done and they did the trileptal test - only they tested for tegretol instead! So at my yearly visit to neurologist, she says wrong test, I've faxed another order, for when you get your regular tests done.

Lab technician had lots of problems finding the right test to do. One lab only does the metabolite test, another lab did it but they had it misspelled! Anyway, got that done. Couple months before this had to go to walk-in for UTI and was given a sulfa drug which neurologist says I should never take...so I was alerted. Went to walk-in a few months later and another dr. got really testy with me when I mentioned it and wanted to be sure whatever he prescribed was ok with this condition...he said call neurologist and check, I should know what I am allowed to take. onder:

Today, at least a month after last test result, dr. calls and says to up my dose of trileptal one more at night. Can't believe she waited this long, and I've been so long without a good test and probably undermedicated this whole time, and have received an antibiotic known to reduce seizure threshold. What does one do when medical care is so bad?

Sorry so long, I didn't know how to say it all shorter. Maybe no answer for this, just wanted to vent!

 

[Nakamova]

What does one do when medical care is so bad?

Complain -- loudly. Write letters to your neurologist's office, to your regular doctor and lab -- whatever it takes to get someone to pay attention. And then if you can, seek out a new neurologist, one who will actually pay attention to your health and be responsive to your questions and concerns.

 

[valeriedl]

When I first started seeing my neurologist I would see his nurse practitioner every few visits. The woman wouldn't listen to a thing I had to say. I would tell her about all the seizures that I was having and that things needed to be changed with my meds or whatever. Her answer was that I wasn't taking my meds and if I would then I wouldn't be having all these seizures. My mom and husband, who were with me on that visit, told her I always took my meds and took them on time but she wouldn't believe me.

After that visit I went up to my neuro's secretary and started yelling, literally yelling, and told her that I was never going to see that woman again. If I wasn't going to see my actual neuro then I was going to go find another one. Haven't seen that woman since!

If I'm waiting for a reply about something I'll give the office about a week to get back to me. If I don't hear from them by then I start calling every day, sometimes several times a day. I usually hear back from them very soon after that. I think they get sick of me filling up their voice mail boxes with angry messages.

 

[Elsie]

I should have been more proactive when they did the wrong tests, went back and insisted on the correct ones. I've never had problems with my med level before like this so I wasn't very worried. My GP mentioned that the level was low a month ago, but then I always have run at the low end of normal level, and I thought that's what she meant. Anyway, there isn't much to pick from in this area for neurologists. Another well-known neurologist in this area I'd had a little history with when my 1st husb. needed one, and we did not hit it off for sure. If I'd go to another, I'd have to go to another town an hour drive away.

I'm having an odd feeling in my head from the increase in dose. It feels like a combination between pressure and ache. I'm just hoping I will get used to it and won't be sleeping all the time like I am now. 3 hours this afternoon and I didn't get up until noon.

One other thing, my gp told me a month ago that Medicare has designated me as an Accountable Care patient and I'm to show that card to any doctor I go to. All my drs. are supposed to coordinate my care now. Sounds good, but I did some research, and what this really means is that the drs. share in my care $'s from medicare and they share the money saved, and also the money used. No doctor is going to want to lose money on me, so I suspect my level of care will be going down. This is all part of the Affordable Care Act. Anybody else experience this?

 

[Nakamova]

Actually an Accountable Care Organization (ACO) seems to improve health care overall. They've been experimenting with it here in Massachusetts. It changes the health care system from one based on volume of care to one that rewards quality and value. The incentive for the healthcare providers is that they will share in any savings that result from providing higher-quality, better-managed care.

 

[Elsie]

Thank you, Nak that is interesting. I had read that the organizations also share in losses, and that's what has me concerned. What causes a loss? Too many tests or procedures or medicines? I don't want unnecessary stuff, but I also don't want things ignored because they're concerned about sharing losses. I guess it will take a while before we really know how this all works.

I've been sleeping on and off all afternoon and half the evenings since upping my dose. Today I did a little better, but not much. I also feel like I have a tension headache or a too-tight band around my forehead. I hope these symptoms go away as I get used to the higher dose.

 

[Nakamova]

Hang in there -- often the side effects go away after a few weeks. I hope that's the case for you.

 

[valeriedl]

I usually give my meds about two or three weeks to see if any of the side effect start to go away or stop. If not or if the side effect isn't something that I can deal with then I call the neuro and let him know. He may lower the dosage or take me off of the med completely. With some meds you will always have side effects and there's really nothing you can do about it unless you stop taking it.

I was taking a med when I was first diagnosed and all I did was sleep. It took almost all my energy just to get out of bed to go to the bathroom because I had no energy. My parents had to force me to eat because I wasn't hungry at all didn't want to. All I wanted to do was lay in bed and sleep. My parents gave it about a week and then called the neuro and told him what was going on. He took me off of it immediately.

 

[Elsie]

Wow, 2 or 3 weeks is longer than I thought to wait to see if the side effects go away. I will try to be patient.

Mysoline and phenobarbitol both affected me that way, like being on a constant does of sleeping pills. Sure glad I don't have to take that stuff any more.

I don't think the pressure feeling in my head is as bad as it first was. But I'm still really loving my pillow!