Do you feel in control of your medical treatment?

[Matthew74]

I was wondering whether you all feel like you are "in control" of your medical treatment. I don't mean that in any deep way, just do you feel more like you are making decisions about what meds you take, surgery, etc., or do you feel like the doctor makes all the decisions?

Objectively, I am mostly in control. When it really comes down to it, if I don't want to take some med, I don't. I haven't had surgery. I'm on a diet. I make appointments with doctors, or cancel them. On the other hand there are a lot of things I can't control. I can ask a doctor to do a test, but can't order it. I can't write my own prescriptions (if I could I'm sure I could make a lot more progress with finding the best meds, best combination of meds.) I can't see the doctor often enough. I don't get enough support with my diet. Etc.

So, even though in the end I'm the one who says "no" or "yes" to what happens with my body, I do sometimes feel at the mercy of others. I guess it's that, while I can and do make suggestions, I can't proactively do a lot. Most of my decisions are giving or withholding my permission for something, which seems more passive.

I'm on a diet now, which is great because it's something I can actually DO about my condition. I can choose to eat this or that, or how much I eat of it. I wish it were working better, but even if I give it up at least I will know that I tried (and I will get to eat Pie, Cookies, and Donuts). :banana: And popcorn. op: And soda. And pasta. And pizza.

 

[arnie]

I pretty much know that I am in control of my treatment. My neurologists I had for years, and the epileptologist I have now have made suggestions and wanted me to do certain things, but in doing my own research I have found that those things are usually not in my best interest. When I tell my docs my thoughts and plans they pretty much go along with them. In the past 6 months or so I have learned a lot of new things and have made changes that no doc has ever even suggested, and in several cases did not even know about (and this was an epileptologist, not just a regular neuro!)
In any case, I have now figured out a med schedule and dose range that has kep me seizure free for about 6 weeks. I haven't been sz-free for that long in 30-plus years!

So yes, I am in control!

 

[masterjen]

I am pretty much letting my doctors run the show right now. They are in the midst of diagnosing a rare (?) kind of condition causing my seizures, and the answer to this will hopefully lead to the right medication to give me better seizure control. Although I'm lost as to what this condition is, and therefore at the mercy of the doctors, I don't feel a sense of loss of control because of it. In fact I feel more positive and in control because I know that after 4 years of trial and error with seizure medication, and only partial seizure control, that the doctors may be able to zero in on a more effective treatment soon.

 

[Matthew74]

Arnie: Awesome. What did you do, if you don't mind me asking?

Jen: That's great! I too would feel more "in control" if I thought my doctors were getting somewhere, even if they were calling all the shots. It seems like if they know what they are doing and are making progress, you are in control because you choose to trust them. It's the in between state where you are seeing doctors but nothing much is happening that leaves you feeling of powerless.

In a way I feel much more in control now than I did seeing my old epileptologist. One thing in particular was that I wanted to make a change in my meds, but he wouldn't go along with it. My new doctor wants to try it. Now I feel like there is a good potential for improvement. Even if the change doesn't work, at least we tried it. Even thinking about the remote possibility of surgery makes me feel more in control, because it's a decision that I can make. Before it wasn't an option.

When my doctor has a "wait and see" attitude about everything I get very frustrated. If we really need to wait and see I completely understand that, but there are times when you have to make the call and give things a try too. Then, if it doesn't work you know it doesn't work and you can stop worrying about it. If you never try it, you don't know if it will work, so you are wondering all the time, "What if we tried this?" And then you are thinking, "Could my life be different? - What if all this is unnecessary?"

So, I'm happier about what is going on now than I have been since I was a kid.

 

[valeriedl]

My neuro always makes suggestions to me but leaves it up to me in the end to decide what I want to do. He lets me know what he thinks could or could not happen if I change any type of medicine or do any adjustments with my VNS. I like this very much because he doesn't say anything like "I'm going to do this and let's see what happens."

 

[BIGMAN131307]

Do you feel in control of your medical treatment?

Yes now I am.

For the longest time I wasn't "really" in control. When I was growing up I had to trust my family & neurologists decisions. I would hope that their actions would be in my best interests. For the most part they were. Sure there was talk of possible surgery years ago. But that was sidestepped for the "safer" route of AEDs. The thought a surgery would scare everyone, especially brain surgery. Remember this was before the internet was available. So that lead me on the long path of AED hell. Some AEDs being worse than others.

After 15-20+ yrs, 14 AEDs, IBS, Ulcerative Colitis, Kidney Stones, Gall Stones, Gall Bladder Removal Surgery, enough was enough. I needed to take charge and end this misery I was in. After a *second round of testing to confirm I was still a good surgery candidate, I went for it. I had my RTLS on 5/13/14 and been looking forward since then. So far the outcome looks good. If I knew this back then, I would "probably" have opted for the surgery. But my family would have fought me about it.

Between Epilepsy & the AEDs, I've missed out on a lot of things growing up. Some of those things good, but some also bad but apart of growing up. One thing that I am sad about are missing the opportunity of a "real" college experience. IE: Going away to school.
Although I did go to a local community college, it isn't the same. Another is all the misery
and pain the AEDs done to my body over the years. Although some was temporary, most of it is permanent: IBS, Ulcerative Colitis, Kidney Stones, Gall Stones, Gall Bladder Removal Surgery. My digestive system works like crap. I can't enjoy a night out without worrying about possible stomach issues. In a couple years I may be rid of AEDs, but I'll be on some type of medications for my digestive problems for the rest of my life.

 

[N Sperlo]

Very much so. My doctor makes suggestions and I decide to go that way or a different way. My doctor is respectful and understands I will do what I think is right.

 

[Cint]

The thought a surgery would scare everyone, especially brain surgery. Remember this was before the internet was available.

I had my brain surgery long before the internet was available and it scared the living daylights out of me and my family. But, so did those awful TC seizures! And back then, not too many meds were available, either and my seizures were getting worse. At that time I didn't feel in control of my treatment.

But fast forward 24 years and many meds later. I do feel in control now. After trying nearly every med out there after the lobectomy and experiencing so many awful side effects, my neuro learned to work together with me. If I cannot tolerate the side effect(s) of a med, I tell her. Now my neuro team asks me "if it is all right with me?" And now that I have the VNS I can ask for the setting to be lowered if need be.

Remember, they are 'working' for us, so we should be in control of our treatment. If we don't like them, we have the right to "fire" them and find some one who is better for our health and well-being.

 

[Tez_20]

I was wondering whether you all feel like you are "in control" of your medical treatment. I don't mean that in any deep way, just do you feel more like you are making decisions about what meds you take, surgery, etc., or do you feel like the doctor makes all the decisions?

Objectively, I am mostly in control. When it really comes down to it, if I don't want to take some med, I don't. I haven't had surgery. I'm on a diet. I make appointments with doctors, or cancel them. On the other hand there are a lot of things I can't control. I can ask a doctor to do a test, but can't order it. I can't write my own prescriptions (if I could I'm sure I could make a lot more progress with finding the best meds, best combination of meds.) I can't see the doctor often enough. I don't get enough support with my diet. Etc.

So, even though in the end I'm the one who says "no" or "yes" to what happens with my body, I do sometimes feel at the mercy of others. I guess it's that, while I can and do make suggestions, I can't proactively do a lot. Most of my decisions are giving or withholding my permission for something, which seems more passive.

I'm on a diet now, which is great because it's something I can actually DO about my condition. I can choose to eat this or that, or how much I eat of it. I wish it were working better, but even if I give it up at least I will know that I tried (and I will get to eat Pie, Cookies, and Donuts). :banana: And popcorn. op: And soda. And pasta. And pizza.

Hi Matthew,
Join the club regarding dieting and I wish you all the best :tup:

It's only been the last 14yrs where I've been in control of what meds i'll take and if they're upped and affect me in any way...then I slowly pull myself back off the extra because over the years it's been mix and match to try and get meds to finally put me under some sort of control but knowing now I have the final say on if i'll try a new tablet or not as helped mentally, as I always felt that uncertainty about meds before having to keep being swapped from one to the other.

 

[Belinda5000]

I feel in control.I've been on 23 different AEDs and I had a RTL back in 1982.

There isn't much left for me to help with my seizures.I have lousy insurance.
There are a few drugs that helps with my seizures Tegretol and it has to be named brand generic will send mt seizures through the roof.
Topamax helps and I'm just a helpless case is all.

 

[Matthew74]

I admire those of you with worse seizures and other conditions than myself.

Best wishes on your continuing recovery BigMan.

I know that from here and elsewhere if the first couple meds don't stop the seizures, the others aren't likely to either. I've been on a number, but you guys have me by a long shot.

I have never had a full evaluation for surgery, but based on imagining, when I was a kid they decided that surgery was not the best thing. They were probably right based on what they knew at the time, and I'm totally satisfied with that. However, when I think about it now (since I'm in worse shape) I think that if I was going to do it, it would have been better to do when I was younger since my brain could adapt better then than it can now.

While I am certainly NOT a worse case scenario, and I can live with it, I never expected my condition to be what it is now. Middle School and High school was pretty normal for me, and even most of college, with certain exceptions.

 

[masterjen]

Arnie: Awesome. What did you do, if you don't mind me asking?

Jen: That's great! I too would feel more "in control" if I thought my doctors were getting somewhere, even if they were calling all the shots. It seems like if they know what they are doing and are making progress, you are in control because you choose to trust them. It's the in between state where you are seeing doctors but nothing much is happening that leaves you feeling of powerless.

In a way I feel much more in control now than I did seeing my old epileptologist. One thing in particular was that I wanted to make a change in my meds, but he wouldn't go along with it. My new doctor wants to try it. Now I feel like there is a good potential for improvement. Even if the change doesn't work, at least we tried it. Even thinking about the remote possibility of surgery makes me feel more in control, because it's a decision that I can make. Before it wasn't an option.

When my doctor has a "wait and see" attitude about everything I get very frustrated. If we really need to wait and see I completely understand that, but there are times when you have to make the call and give things a try too. Then, if it doesn't work you know it doesn't work and you can stop worrying about it. If you never try it, you don't know if it will work, so you are wondering all the time, "What if we tried this?" And then you are thinking, "Could my life be different? - What if all this is unnecessary?"

So, I'm happier about what is going on now than I have been since I was a kid.

I do understand the feeling of not having control. I first had a neurologist for 2 1/2 years and was getting no where with seizure control and he was impossibly difficult to get a hold of. Then i was sent to an epileptologist for supposedly just a consult but i suspect she saw I wasn't getting anywhere with treatment with the neurologist and without either of us really saying anything about the neurologist's approach, the epileptologist just added me to her caseload and I'll be forever thankful for that. She got the ball rolling in trying to determine the true cause of the seizures, and has brought in a couple of other specialists to consult. I hope by Sept. to have results of genetic testing that might lead the way to more specific treatment!

 

[Matthew74]

Jen, I hope they figure something out.

Just as a thought, I think it's important that doctors (and everyone else) treat people like human beings. I don't mean that your neurologist has to be your therapist, just that the personal interaction is extremely important. Two examples:

1. My old GP was great. He was always upbeat, kidded me, and seemed to know what the right thing to do medically was. I always felt better after a visit, and the stuff he prescribed worked. One thing he did was that he managed to give me a good perspective on whatever it was that was wrong (stomach pain, etc.), and with life in general.

2. My spiritual father who died a number of years ago. He was a confessor in Romania for many years ("re-education", jail, torture). He was more full of love and joy than anyone I have ever met. He was in bad health (dying toward the last), but at the same time vigorous. Just being in his presence was healing. I was not the only one to notice, and all sorts of people came to see him.

Obviously, I don't expect my neurologist to be anything like that. As for myself, I'm often irritable, and am perfectly helpless when it comes to offering sympathy, cheering people up, and so on. However we, as human beings, are whole persons. We are not just a brain on an MRI, or electrical impulses on an EEG. My best experiences with doctors have been those who could, in a simple way, connect with my person and my humanity. They might listen well, answer a question, teach me something, or address a concern. It doesn't have to be complicated or deep. When you go to see a doctor, you (or at least I) am going to a particular person for help. For me, that's the most fundamental aspect. I'm not really as concerned with getting fixed up, as I am getting some kind of help. Maybe in some ways we ask a lot of them, but it's part of their job. You can give someone meds, or operate, or whatever, but if you recognize their fundamental human dignity and respect their vulnerability, you accomplish more than all of that ever could. I think that human relationships, even on a professional, or doctor - patient level, exert a much greater influence on outcomes than the right pills. You can give someone all the right pills, and take care of their body, but if they are totally isolated as a person things are going to be rough. I think the same tendency to being impersonal is taking place throughout our whole society.

Now, if I could just stop being so grouchy.

 

[Blonde Angel]

No I don't... I feel crappy that Epilepsy is destroying my Daughters well being & ability to enjoy her life.

These drugs give me grief in trying to figure out what will work for her.

I absolutely hate the challenges of people (Drs included)that do not listen & do not know what its like to walk in her shoes.

 

[lindsayschu2]

Yes I do. I had a very bad neurologist for a long time and educated myself and basically took things into my own hands as much as possible, which made a huge difference in my condition (if I hadn't, my electrolytes would have continued to spiral into the crapper and I would have stayed on a med that was causing a new type of seizure). I took that as far as I could go, and then eventually saw an epileptologist, got a rediagnosis, and let her take charge for a while, which also had a good result. Now I'm planning on stepping back in and suggesting a reduction in one of my meds since I think my level there is counterproductive. So I guess overall it's give and take--but I think the key is self-education, and knowing when to assert yourself, when to let them guide, but being sure you understand their suggestions and agree that it is the right course. If you are not participating in your own healthcare you could be at the mercy of a bad doctor. I have learned over 35 years of having epilepsy there are sadly way too many of those out there.

 

[Blonde Angel]

Thanks lindsaychu2 it's important to be just assertive & stand up for yourself.

Everyone's got good & bad days.. I do feel overwhelmed when my daughter has crappy side effects with the meds & I so wish to just make her & my loved ones quality of life easier.

We love our summers here, & swimming /water activities play a big role in my family. We try to get my Daughter involved & we need 2 people to monitor her in the water. I'm very much aware that if the water in the spa is too hot she does have a seizure. This girl is so happy in the water, & I see so much joy in her.

I just don't want seizures to stuff this up.

I do believe that the past drugs she had actually increased her seizure activity..so my challenge is to find what works for her.

So I have to do my homework & get that information .

Self advocacy is important.

 

[Topcat]

Now that I have a real epileptologist rather than the neurologists I had in the past I feel more in control. Before it was like: "try this drug try that drug;" whether it worked or not. I felt like a guinea pig.
This epileptologist seems to agree that it is rather pointless just to try a drug for the sake of trying it. Until some better drug or treatment comes out I am going to stay where I am.

 

[Matthew74]

That's what I've been getting from everything I read. You have to be your own advocate, you have to do the research yourself, and if necessary you have to get another doctor. I think I have been fairly good at that for some time, but I wish I had known that I would be responsible for figuring everything out 30 years ago!

The patient is at a tremendous disadvantage, in terms of knowledge, access to information, access to doctors, and being sick.

It's almost like a charade, they pretend to fix you up and you pretend to get better.