Defying Your Doctor

[Endless]

Well, my epi and I don't agree right now. I want to taper off the meds and he says no. He won't sign my back to work form unless I stay ON the meds. I say too bad and I'll just find another doctor who will sign the form. I think we are two bulls with horns locked.

This week I'm also returning to my normal activities. The ones he banned. Swimming, ATVing, single-handed sailing etc. Darn the seizures, full speed ahead!

I could use some company, here.

When's the last time YOU disobeyed your doctor's orders and what did you do?

 

[epileric]

I remember being in the hospital for pneumonia when my neurologist who worked out of there (though I didn't know it) doubled the amount of my meds without telling me. I was never told until I mentioned the spots I saw to a nurse. Finally after the neurologist came in & told me he was doing it though still never told me why considering my seizures were somewhat controlled & refused to accept that I didn't want an increase.

He finally came to see me before I left after 6 weeks & asked how I"m doing. I told him I didn't take them & threw them out (truth is I stashed them to take home). Of course he reprimanded me for wasting taxpayers money. That was the last time I saw him.

 

[Nakamova]

I disagree with my neuro about many things. I'm sure she considers me "non-compliant" (boy do I hate that word). She wanted me at minimum 300mgs of Lamictal. I have a history of seizure control on low doses, so I refused and only went up to 250mg. Since then I've proceeded to taper down to 175mg where I am now. I made it very clear to my neuro that my decision wasn't made lightly, and that I weighed the risk of having a seizure against the possibility of being over-medicated. She was so negative and snarky about my decision that I haven't bothered to tell her that I haven't been at 250mg for almost two years. I see her in a couple of weeks, haven't decided if I'll tell her then.

Anyway, I support you Endless -- neurologists do have knowledge to offer, but for much of epilepsy treatment it's a guessing game, and your guess is often as good as or better than theirs.

 

[Endless]

Hey, Nakamova,

You may have to tell her. She'll figure it out when she sees your blood levels. (I assume she tests those?)

 

[sasasmom]

I had my last seizure @ age 19. Around that time I went to my neurologist and told him that I had stopped my meds.(kept on forgetting to take them) He told me that I would continue to have seizures. When I asked him what my EEG had said he told me it was clear. Sometimes you just have to stand up for yourself and hold your ground. You have my support!!! Only you know your body.

 

[Nakamova]

The last time she tested levels she wanted to up my meds and I said essentially that the proof is in the pudding -- no seizures, no warning signs of seizures, no need to up the meds. I also know that the "recommended" Lamictal dose for epilepsy is just an average, and that the recommended dose in Europe is actually 100mg less than in the U.S. I don't think it's because Europeans are naturally more responsive to meds...

 

[Endless]

What's the recommended dose for Lamictal?

 

[Nakamova]

The Europeans suggest 100mg to 200mg daily (though of course some folks may need more). In general though there is no "standard" dose. Officially, "a therapeutic plasma concentration range has not been established for Lamotrigine. Dosing should be based on therapeutic response". In other words, whatever works, works.

 

[Elsie]

When I disobeyed the drs. and didn't take my medicine, my seizures came back. Course, I was young and in great denial and scared out of my wits.

Going back on the meds when I finally came to grips with needing them was not as difficult as it could have been because at the time I didn't have side-effects a lot (at least not like you have). Well, I did have that horrible depression from it, but at the time didn't know what was causing it.

Anyway, you have a harder decision to make because your situation is more difficult to manage, and your side effects are many. I found it much easier to be compliant once I had a doctor I actually liked and trusted. When I told him I couldn't stand the one I was on, he immediately switched me.

I wish you luck in sorting all this out.

 

[RobinN]

I respect Rebecca's doctors but I do not see them as having all the answers. Of course neither do I, but I do live with her situation 24-7, they don't.

I trusted my instincts, which works 98% of the time, and the other 2%, I am willing to adjust the course.

We never once had a doctor say this is what you MUST do. But I did go to most of the appointments with information and research as to why I was making the decisions that I made. If a doctor was snarky... he wasn't a doctor that I cared to work with.

All I can suggest from having gone through the same situation, is to go very very slow, and reduce carefully. I also would increase the activity slowly as well, so you don't just run into a brick wall. Jump from one mtn to the next and you will be successful. You might have a occasional seizure on the way, but it also might just be your brain getting use to its new environment. Remember that the brain is changeable and pliable. "The brain has the amaz*ing abil*ity to reor*ga*nize itself by form*ing new con*nec*tions between brain cells. "

Take time to learn new things and you just might create a stronger brain.

http://www.sharpbrains.com/blog/2008/02/26/brain-plasticity-how-learning-changes-your-brain/

You know you have my support. I think there is much to learn about this disorder, and I know all the answers are not in the hands of pesent day medical doctors. We just need to find the right words, so they don't feel attacked.

 

[daisy.girl]

Endless...
I so understand too. I have been allergic to 2 meds, and I am on the third now, Keppra XR....woke this morning with a swollen face and eye lids. I am just about over meds too.
I am sure you have read everything about supplements, but I have been searching too and found this one to be very interesting.
I would much rather take a few supplements.

http://www.mothernature.com/Library/Bookshelf/Books/10/57.cfm

I wish you the best....please be careful and maybe try to find another doctor that is more willing to allow the trial of nutrition and supplements.

How are you feeling?

 

[Endless]

Daisygirl, your eyelids and face are swollen? That is dangerous - does your doctor know? You should go to the ER right now. That's an indication of an anaphyactic reaction. Do you have someone to take you? I'm very worried about you. Tell us what your doctor or the ER doc says?


Thank you for the links, everybody. I saw a great show on brain placicity on public tv a few weeks ago. I'm trying to figure out how to apply it to quieting brain storms, but it can so clearly help with memory and thinking. It just shows... get out there and try it and soon your brain adapts and you can do it.

Vitamins... I was opening my mail last night and got a note from my PCP. I guess my vitamin D is at 10 (it shoiuld be at least 30), despite taking 5000IU per day already. I don't know what a vitamin d deficiency will do to a person other than affect bones, but i'm starting on a prescription for 50,000IU today.

The seizures started again last night/early this a.m. Truly icky and they kept me up all night after 2pm. but now that I know what they are they don't scare me as much any more. I know I'm not going crazy - it's a seizure. It's amazing... how can a TV picture look 3x as big as normal, and still look like it fits inside the TV frame? And how can i be frozen in terror one minute, and be fine the next? temporal lobe epilepsy is truly strange. it's like living in one giant acid trip. or at least what i imagine one to be like. I'm hoping my seizures will quiet down once my body adjusts to each step down in the trileptal. and I'm still ramping up to a believable dose on the lamictal cause i don't think the company doctor will approve me coming back without it.

 

[Nakamova]

Endless, I just upped my vitamin D (though not as much as you) for the same reason. The AEDs seem to mess with the D metabolism, bigtime. My PCP says that people are happier if their D levels are up at 50, so I hope your Rx does the trick.

Do you also take a B12 supplement (apologies if I've asked this before)? As a vegan, you might be in need. If you're already taking a B12, you might consider upping it because Lamictal can depress your CBC levels. I recently added a separate B12 supplement (in addition to a B Complex) because of mild pancytopenia caused by the Lamictal.

 

[Endless]

Hi, Nakamova,

I'm supplement central. I take so many pills I feel like a goose being stuffed down the gullet. Here's what I'm taking:

• Multiple Vitamin
• B Complex
• B-12 (1000 mcg)
• Vitamin D (5000 iu now upped to 50,000)
• Calcium (1200mg)
• Magnesium Glycinate (400mg)
• Taurine (5000 mg)
• 5-HTP (100mg)
• Probiotics

All these supplements give me the runs. I think the magnesium is responsible. I tried different kinds of magnesium, and this is the one that seems to cause the least problems. I also take them in divided doses throughout the day and that seems to help, too.

Today I feel better after my first few days of cutting back on Trileptal. I can't remember how many days I am into it. I'm having seizures again, but they are SPs. Still really awful feeling, but now that I know what they are I'm not afraid of them. I'm hoping the CPs stay away. The postictal migraine is rather gruesome and I'm going to need some help with that. And I have this weird buzzing feeling in my body. I realized that's what my auras feel like but not as strong as this. Plus this doesn't have that feelign of forboding that goes with an aura. Kind of an "aha" moment for me. There has to be some kind of relationship there. The buzzing is getting better each day. Still dizzy, still nauseated, still can't sleep at night but the AED pills knock me out like a sleeping pill. All this seems a little better every day.

I'm going to see my PCP on monday and see if she can prescribe something for temporary relief while I'm going off the Trileptal. It seems like she should be able to help the sleep, dizzy, nausea. And I'm going to need some long-term migraine relief because the imitrex just isn't even making a dent in it.

The good news is that yesterday I had such a good belly laugh, and I solved a math problem in my head. I haven't done either of those things in my recent memory - since I went on AEDs. I'm beginning to feel more like my old self again.

 

[epileric]

All these supplements give me the runs. I think the magnesium is responsible.

When I was seeing a naturopath she told me to start taking magnesium at a low level for 2 days then up it & wait another day or 2 & keep upping it until I do get the runs. Once that happens I should go down 1 dose to find the dosage that my body needs.

If it is the magnesium giving you the runs you might be taking too much.

 

[rangerwvu]

For what it is worth, I strongly agree with Robin in choosing the words with your Doc(s) carefully....I have certainly had my battles both professionally as well as while being in their care/treatment. The last neuro I had before I started with the epilologist, really brought the worst out....even though I had chosen my words very carefully and was trying to be heard and sort of negotiate for lack of better words....I finally said: "Look, you are the only one in the room getting paid and I am the only one in the room loosing control of my body from time to time, so you need to listen carefully to what I am saying. Ask questions if there is something you do not understand". Needless to say, with that paticular doc, that did not go over real well, but I will give him this, even though he was pis*ed, he did seem to respect me a bit more. Unfortunatley, I had to eventually use the "you are the only one in the room getting paid" statement with my new doc, but it worked out well...he laughed, told me I was right, and has had a better attitude. He was great when he was working on figuring out what was "wrong" but once I was lucky enough to be one of the ones to learn why I am epileptic, his bedside manner and quality of interaction with me dropped quickly. But, I have taken the very calm, moderate, tone and have to 'nuge' him sometimes and it has ended up for the best....so far......but after choosing the calm, moderate approach, I also support letting er rip if they dont shape up!

 

[Endless]

Right now I am just so done.

I am done with meds that make my brain warp, my body crash, and my personality change.

I am done with needle sticks, being pumped full of radioactive materials, stuck in tubes, metal parts and wires glued onto my head, hit with magnetic waves, and neuropsychologists digging around in my brain.

I am done with doctors who look at me as a collection of seizures, not a whole person. Who don't listen, and don't partner with me in my own treatment.

Most of all I am so done with seizures. Tired of. Sick of. Tried all the usual stuff, and after going off some of my meds because my body couldn't tolerate the side effects, here they still are. They are unrelenting in their persistance. Unpredictable. Awful. Life altering.

No more. I'm finished.

Scotty, beam me up.

 

[Elsie]

Oh, Endless, try to hang in there. I don't know what it feels like to go through what you are going through, but try not to give up. I've seen how much support you have around here, so a lot of people do care. One never knows how close to finding a solution they are if they quit trying. It might be just around the next corner. Hoping life gets easier for you soon.

 

[Endless]

I know... I'm not the first person to get tired of all the garbage they put us through. Instead of "done with," maybe "sick of" would have been a better term.

I think we should all go on a cruise together. Meds optional. Sort of like "suits optional"

 

[Nakamova]

Sign me up for the cruise! The opposite of Club Med (Club No-Med), right?