Care and ACA, life changes

[Matthew74]

I need some advice / info. I have had epilepsy for about 30 years. I'm 39. I have been seen at some good hospitals, etc. However, I do not have insurance and I am by no means prepared to sign up for Obamacare. This is my problem:

I saw a good Epileptologist I liked at Beth Israel Deaconess in Boston, and would like to go back.

Basically my situation is that after repeatedly asking my local Epileptologist (in MD, I live in VA), he finally agreed to put me on Felbatol and take me off Tegretol. (I was on Felbatol years ago when it first came out, and I never felt better in my life.) However, when I went back to my doctor again to up the Felbatol level, and was feeling somewhat better, he refused to change anything. I've been on it maybe a year now at a low dose, and have decided I can't continue on three different meds. (Tegretol XR, Keppra, Felbatol). I don't want to deal with the side effects, and while I am fine for right now with the manufacturers' prescription assistance programs, in the long term I'll never be able to afford it. I'm afraid that 1. I'll get a real job (which would be good), but I'll have to buy my meds and not be able to afford them. 2. I'll get insurance or medicaid but still won't be able to afford them. or 3. Under the ACA, Insurance or Medicaid may not let me get them. Finally, while the Felbatol may be perfectly safe for me (and I would like to take it), I think it's nuts to take it as a minor add on. I'm still not feeling good, am having auras (simple partials), have all the effects of the other meds, have to get blood tests, my life is not improved, and there may still be running some risk.

That's only the meds...

I have seen several Epileptologists and they wanted me to go in the hospital, and go off meds so that they could see my EEG when I have a seizure. I'm willing to do that, but very skeptical. I'm not afraid to go in the hospital, but my seizures are just painful and terrifying in themselves. One time I took myself off meds, much more gradually than they would, and it was not pretty (there was a lot of blood). Even if I don't get hurt, based on previous experience I'm really scared that it will have lasting effects that I may never get over. Finally, I'm not convinced that it will do any good. I have had inpatient EEGs that showed virtually nothing even though I lit up with simple partials. And, I'm afraid that even if everything goes well, nothing will come of it. Virtually no improvement has come as a result of any of my other tests, scans, etc.

But also...

As I said, I'm 39. I have a master's degree, but have never been able to support myself. This isn't all my fault. I work part time. I live with my mother and sister. My mother is retiring to FL in a few months, and my sister is getting her own apartment. I have plans for going to school to learn Musical Instrument Repair next fall, and I'm sure that this will get me a good job. However, basically I'll be alone, and I'm just afraid that in my present condition, and with essentially no family, I won't be able to make a decent go of it. So, my first objective is to try to get on no more than two meds (preferably just Felbatol, if it works). I am also willing to consider VNS or something like that. I am not a good candidate for brain surgery.

So...

If there is a time to do anything, now would be a good time. I don't know whether this would even be possible under the ACA (regardless of whether I sign up or not). I do not know the "real" situation with the ACA in Mass (or anywhere else for that matter, since it hasn't really started). I'm not really invested on any particular course of action, besides improving the situation with my meds, but really need some improvement. I am entirely convinced that it is possible, but I need some doctors who are willing to cooperate with me, and who want to help me to become better functioning.

Thoughts?


I'm new, so my apologies if this is in the wrong section. I'm "Matt74" on Epilepsy.com.

 

[giveasmile]

I don't know a lot about the ACA but premiums and RX costs just keep going up on every plan. I don't blame you for wanting to consolidate and be ready for if you work and the assistance plans disappear.

What I'd hate to see you do, though is to take yourself off everything, for a test that may or may not help anyone figure out anything. I'd probably only do if it was mandatory to try VNS.

If the combo you are on is working then I would try again with your current doctor by explaining that you can not afford 3 and want one of them to be Felbatol.

 

[Cint]

I'm surprised your dr. is still prescribing Felbatol. I took it years ago when it first came on market back in 1993, but had to be taken off within several months because of the severe migraines it was causing. It also causes aplastic anemia so most doctors don't prescribe it anymore.

If you're only wanting one med, then I'd ask to be evaluated for the VNS. I've tried numerous meds and brain surgery to no avail. The VNS has helped me tremendously, but I still take an anti-seizure med. Since you've been to some good epileptologists in Boston, then I don't see why they wouldn't co-operate with you on this.

 

[Nakamova]

Hi Matthew, welcome to CWE!

I've also seen an epileptologist at the Beth Israel, though I'm not doing so currently. (I live in the Boston area). As far as the ACA is involved, I think the options for health insurance plans and drug coverage are determined by the state in which you live. If you are thinking of moving to Massachusetts, then once you become a resident you would apply for a plan through the Mass. Health Connector (which has had a proto-version of the ACA for many years now). See: https://www.mahealthconnector.org/ You can call the 800 number listed on the site to find out what policies might be available to you.

I am self-employed so I have a different kind health-insurance, which I purchase through the Small Business Service Bureau. My plan costs about $650/month, and includes drug coverage -- I have a co-pay of $15/month for Lamictal.

If you aren't moving soon, then you should be persistent about finding a neurologist in the DC area who will listen to your concerns, and collaborate with you to put together a new treatment plan.

 

[Matthew74]

Cint,

I think that my Dr. chickened out. So, he's letting me stay on what I'm on but won't go through with the planned change. I spoke with my Dr. at Beth Israel about VNS, but I was in school and came back home after I graduated. I'm sure I would do better there.

Maybe you can help me out. The thing about VNS that I was afraid of was that I didn't want a "thing" stuck in my chest, especially if it didn't work. Having a wire permanently stuck in my neck didn't sound so cool either. I see you are in Littleton and do some hiking. I was worried that the device would bother me under my backpack straps. Has that been a problem for you? Can you feel the wire? I use a sternum strap. (The plus side would be that if I got it I might be able to feel comfortable hiking again, and could ride my bike. I sometimes get bad auras, or seize when I get too aerobic - not good for my long term health.)

I developed epilepsy when I moved from CO to PA, and later it got worse when I moved from CA to VA. I think the climate had something to do with it.

 

[Matthew74]

Nakamova,

Thank's for the welcome. The SSBS looks interesting. If all goes well, I may have the option of setting up my own repair shop. Thank's for the info.

Perhaps it's time to look again for a new Epileptologist. I made an appointment at John's Hopkins, which was great, but he wanted me to do the EEG off meds in the hospital which was absolutely impossible without insurance, and the charge for the appointment alone was astronomical. I made an appointment at Georgetown, which did not go well. I've seen three other neurologists in private practice, besides the one I'm seeing now. All they want to do is give me more meds! I can still try GWU, or some of the smaller hospitals.

I have found that they won't reduce one med until I'm dosed up on another, but I can't make it. The side effects get too bad. I have explained this, but they don't listen. I very sincerely tried going along with this several times, but they want to move so slow with everything that it makes it impossible, especially when you are working.

 

[Nakamova]

Would it work for you to do the taper and ramp-up at the same time? In this scenario, rather than waiting to get up to the full-strength on Med B before starting to taper off Med A, you would do the processes simultaneously. I've done some medication switches that way and it has worked well. You could also ask to try going unmedicated, with the idea that if after tapering off Med A your seizures began to escalate, you would then consider ramping up on Med B.

I do understand the neurologists' default position. You are much less likely to experience withdrawal or ramp-up side effects if the process is done slowly in very small increments. If you can manage this, it really is the safest route to take. But it is also your prerogative to ask to go off medication if you find the current physical and financial toll too great. And the docs should help you come up with the best solution under the circumstances. Again, no matter what you decide, keep in mind that "low and slow" is considered the optimal approach when ramping up or down.

 

[Matthew74]

How do you talk to your doctor to get them to listen?

I've seen two that would listen, but I can't see them right now. The rest have been blockheads (and I mean that in the nicest way possible). I try really hard to listen to them, cooperate, respect their judgement, do what they say, etc. I also try to make myself as clear as possible. I can only conclude that they either don't listen, or don't care what I say. I'm leaning toward the latter. (Sorry, there's a lot of angst here.) In the end the only way I can get off of anything is to stop taking it on my own, but because I'm always on so much stuff I'm never sure that it alone would be so bad, or that it would not be better than what I'm doing now. I've been on a lot of different meds, but I don't know what any of those would be like without one or two other medications at the same time. Then you get all mixed up not just about side effects, but how you feel as a person, and start to loose track of what you are really like without all the drugs.

I have been on a much lower dose, but I was doing much better then. I don't think that's an option now.

It seems to me the only way to get it all figured out is to experiment a bit in a careful but intentional way. Maybe I'll have some seizures. But having said that, doctors are nuts if they think they're more worried about me having seizures than I am! They're also nuts if they think they know better than I do when I might have one, or how well I'm doing. I'm so frustrated, but I just can't get through to them.

 

[Nakamova]

If you do decide to self-taper, keep your neurologist in the loop, even if he/she disagrees with your policy. That way if (heaven forbid) you ended up in the ER, there would be some record of your most current medication regime. Go low (smallest increment possible) and slow (waiting at least two to three weeks at each increment). This will help your brain adjust and allow you to monitor any symptoms.

I understand how hard it is to get some neurologists to pay attention to your concerns. When I ramped up on Lamictal, I stopped at a dose that was lower than what my neurologist wanted (She was the Beth Israel neuro, BTW). She insisted I would have a seizure if I didn't go higher. I said I thought that was unlikely given my own medication history, but that I was also ready to accept the possibility of a seizure if I was wrong. I understood her point of view even if I disagreed with it; she was unable to cede that my point of view might be valid as well. Long story longer: I remained seizure-free at the lower dose, and in fact have continued to be seizure-free after I tapered to down to an even lower dosage. And I switched neurologists.