Advice

[KelVarQ]

Hello All, I need some advice. As some may know I've been doing the GF diet and am having great success, however, I never told my neurologist that I stopped my meds. Today my neurologist called me to see how I was doing since he hadn't heard from me in a while and I told him I was doing fine and all was well. I didn't have the courage to tell him, at least over the phone, I stopped my meds and he asked, "So you're still taking 250 of Keppra in the am and pm?" I told him I was and he asked about side effects and I just said everything was fine and wanted to quickly end the conversation since I hated lying to him. I told him I would schedule an appt. with him, which I intend to do this week and come clean with my decision to stop meds and tell him about the GF diet. I'll be honest, I know he's not going to be happy that I stopped my meds without his consent and I already know he doesn't really buy into per se' holistic approaches. I LIKE my neurologist and don't want to lose him and I'm worried my news will not go over well with him. A part of me doesn't even want to tell him I stopped the meds and just tell him all is well, but a part of me wants to tell him cause I don't like lying to him and obviously I want him to know the GF diet is working better for me than any medication ever did and the fact, at least for me, is that my quality of life with E and adhering to the GF diet is better than my quality of life on medication. He's a great doctor and I do have the utmost respect for him but I fear that since I disobeyed his orders and went out on my own he's going to be disgusted or perhaps cut me loose. Do I need to really see him? Perhaps not, BUT I don't want to lose my ties to him or the hospital since I really don't know what the future holds since meds worked for a while, surgery worked for a while and my seizures eventually came back so perhaps the GF diet is a temporary fix too. Don't know, but bottom line is how do I tell him I disobeyed his orders and took myself off meds without his consent? Do you think by telling him he will cut me loose as one of his patients or does he have to cut me loose since I'm not following his orders? Yes, I could say "Well if he cuts you loose because the GF diet is working, etc. than find another neurologist." That's not the answer because I've had a number of neurologist's already and he truly is by far the best I've had and I think the majority don't buy into the whole per se' holistic approach either. The one good thing I have my husband coming with me since my neurologist likes to talk to him since my husband (caretaker) knows better than me or my doctor and he knows the GF diet is doing wonders for me, so that does help. My neurologist wanted to talk to my husband today and I passed the phone to him and poor guy was trying to wing it without totally telling the truth. So we opted to make an appointment with him and tell him face to face and I'm stressing it.

[Endless]

Hi, Kelvar,

Remember, the doctor works for YOU. If he gets mad and cuts you off as a patient or doesn't treat you with respect, he was a bad doctor to begin with, so who would want him? If that's the case find a new one.

He wouldn't be miffed that your seizures are controlled by diet alone now. He might be a little miffed that you went off without guidance from a doctor because it can be harmful to do it that way. And he might be miffed that you lied to him. It was a self fullfilling prophecy. It sounds like your own fear of him being miffed made you lie which may have created a situation where he would be miffed.

I'm a little curious - it's a little unusual for a doctor to ask to talk to a family member. Does he do that often?

Have you thought about telling him how you feel? That you were afraid? Then telling him the truth?

It's so important to be truthful with our doctors. Otherwise they can't help us.

[Endless]

One more thought - the seizures (past and present) can make us paranoid in general. It can go along with epilepsy. Don't let that get to you or rule your life.

I'm struggling with using my logic to overcome it. I know it is the seizures. Now to realize that in the moment when I feel it.....

[daisy.girl]

one thought.....
could you e-mail him prior to your visit so it is all written out. I know for me, when I begin to try to explain why I am doing something I get tongue tied, but if I can write it all out it is easier.

Remember to tell the doctor how important is it to keep him as your neurologist, but that at this point and time, your family has just decided to 'try' this approach.....

wishing you the best!

[RobinN]

I was going to suggest why not write your speech down... in letter form. That way you can say how you feel without the pressure of wondering what he is thinking , or second guessing body language. Give it to him to read if that helps you. You also might consider having someone in the room with you on this appointment for support.

You need to tell him. IMO it is doing disservice to all those that are improving with nutritional changes, and will ultimately shed more light on the subject. You give the power to the medication with the lie continueing.

He will respect you if you are honest, especially if the quality of life is improved. You need to stress that. If you have a copy of your journal or calendar of events, let him see the improvement. Stay strong and believe what you are doing is right for you.

I did many things that were not "ordered" by the doctor. If you have good reasons for doing so, the doctors in the long run will respect you more.

[KelVarQ]

Thanks for the advice and yes I'm going to schedule an appointment tomorrow.
Robin, I have taken into consideration about others who may benefit from the GF diet which is yet another reason why I want to tell him. Perhaps he may have some patients where meds aren't giving them full seizure control and by adding one of the diets they may have better success. But the more I think about it I understand why these doctors don't accept these diets as a way to control seizures and I can't really say I blame them anymore. These diets should actually be a compliment to medication and not replace them. Yes, I'm having success but I would like to take a medication along with the diet for the seizures but I simply can't tolerate the meds. It would just give me more peace of mind. If one couldn't get hurt or even die from seizures perhaps they would be more apt to say, "Try the diet first." But knowing the risk doctor's can't allow patients to trade meds for a diet even if the diet is working. I've taken quite a few seizures since starting the diet but I was always able to link it to gluten or nuts. I realize that perhaps I fear telling him because I wouldn't accept my patient going off meds and I don't care if they say the diet works because it's just too risky. I think I just realized all this because originally my attitude towards doctors prescribing meds for just about everything was quite different. So what about others? Maybe the doctors do recognize the diet works but are or would be reluctant to tell patients out of fear they would actually stop their meds. So do I think he'll be upset about it? 100% as I recognize I would be too and for good reason. I can't say the diet is 100% yet because sometimes I slip and have gluten or nuts and seize. I feel like I can only say it's 100% when I'm seizure free for at least 6 months and I think that's what I've been waiting for before telling him. It's not an easy diet since it seems like it's in everything, but I'm making some headway. I'll let you know how it goes. p.s. I love the idea of writing things out and thankfully my husband will be there. He likes my husband and values his opinions or perhaps observations.

[RobinN]

I have considered all of the same ideas as you have when discussing my ideas with Rebecca's doctor. She told me that she was impressed by the direction I had chosen, however many people would not want to put so much time into it. She said most people want a quick fix. My response (which I never was able to tell her, since I thought about it later) is, that you never give the patient the option. I had asked a previous neurologist if diet played a role and was told NO. Had I known in the beginning what was going on with her GI system, I would have chosen alternatives to the medication that made her life (and mine) a living hell.

I understand the predicament they find themselves in and the legal issues that follow.

[KelVarQ]

I had asked a previous neurologist if diet played a role and was told NO.

Well thankfully we both know that's NOT the case! Robin, thank you as you have been a big help to me as well. You're not just helping your daughter but many others...so, thanks to Rebecca too!

[RobinN]

You are very kind. Thank you

[Nakamova]

Kel, for all the reasons mentioned above, I do help you are able to tell your doctor. I completely understand not wanting to though -- I'm on a lower dose than my neurologist thinks I'm on. She was so negative when I expressed a desire to try a lower dose, that I feel it's not worth the aggravation to discuss it with her. It's sad that I don't feel comfortable trusting her with the info, and truly, if it were easy to do, I'd switch to a different neurologist. Since I'm stable on my current dose, I'm just letting things ride for the time being.

I applaud you for your success with the diet, and I hope your doc listens with an open mind and learns from your experience.

[Endless]

Wow... sad you can't even be honest about the dosage of your meds. When your seizures are doing okay is the best time to switch docs. It gives you the months you need to research and find one and finally get in to see them. That wait for a new patient appointment can be mighty long.

Switching when you're feeling relatively good removes the desperation factor, and odds are you're thinking more clearly. If it were me, I wouldn't want to be stuck with a doc I couldn't talk to later when I'm in a health crisis and I really need clear honest communication in order to solve the problems.

[douglas]

i personally cant see a neurologist. getting upset because you went off meds on your own. i am sure others have done it. but i can see a neurologist. getting really upset if he gave you a letter to get your driving license back under the condition that you keep taking your meds but then you go off them on your own. (up here in Canada - the neruo has to give you a letter stating how long you have been seizure free and that you can drive again. )

can someone post details on what is the GF and GI diets? i might want to try that. anything to get off meds if possible.

[epileric]

can someone post details on what is the GF and GI diets? i might want to try that. anything to get off meds if possible.

GF- Gluten Free

GI- Gastrointestinal

[SteveUK]

Hi,

I hope your meeting goes well with your doctor, and it's definitely the case the she/he works for you. Hopefully you will be surprised by their response, doctors should be there to support you as well as advise you too.

Going along to consultations / meetings with someone else certainly helps, I recently went along with my girlfriend to a meeting and she was able to shed some light on information that my neurologist said.

Jotting a view ideas down on a pad could help too.

Good luck and I hope it goes well with whatever you decide.

Steve

[KelVarQ]

So last week I came clean with my neurologist about not taking meds. He took it well but is skeptical about a GF diet controlling my seizures 100%. I'm set up for an EEG this Friday (1 week) and I'll have 3 days doing the GF diet and then he wants me to start eating gluten.
I have a problem...I know the GF diet is absolutely working but I'm not so sure 100%. I've mentioned that I've had a few seizures here and there but I'll link it to food one way or another. Now, for the past month or so my hair has been shedding and my period was 3 wks late (since at least Dec. 09 it's been inconsistent), so I started doing some research and found that it could be my thyroid (hypothyroidism) and low and behold I read that could be linked to seizures as well as Celiac. The GF diet definitely works, but the few seizures here and there I'm now not so sure about and the last thing I want to do is seize during the EEG. My neurologist said if I seize (and he thinks I will) we have to have a serious talk about meds and/or possible 2nd surgery. Although to me the few here and there (nocturnal complex partials) are no big deal but apparently even having 1 is too much. So, I guess my question is does anyone have the thyroid problem as well and if so, is there anything working for you holistically? I went to see an Endocronologist today but the blood work will not be available for 2 weeks, which doesn't give me enough time since I go in for the EEG Friday. Yes, I'm going to ask my neurologist about the thyroid but my goal NOW is to remain seizure free for those first 3 days of the EEG, otherwise the GF diet in my doctors eyes will not be a contributor in controlling my seizures and I KNOW that it is! I have 99% seizure control with a GF diet but that 1% I'm no longer certain that it's because I was accidentally having gluten. Any thoughts would be appreciated. OH...p.s. I don't know much about the thyroid whether hyper or hypo, but when I started searching late period / hair loss hypothyroidism came up and I have a few more symptoms (coarse hair, which I've been wondering why my hair has been feeling dead!, sleeping problems...always and dry skin). Thanks

O.K. had to come back and edit...I just found for hypo or hyper thyroid...help sooth and heal your thyroid gland naturally: (Ironically awhile back a friend told me about coconut oil controlling seizures...was taking it but stopped. I'll have to go back).
Quote:
"Little Known Tip #1: Add Pure Virgin Coconut Oil to Your Daily Diet"

[RobinN]

I too don't know the whys and the why nots. You need to trust your instincts. In fact your body might be still healing if it is sensitive to gluten. To have any doctor wanting you to compromise your system with gluten and "cause" a seizure to occur (or not) isn't a doctor that wants "to first do no harm". I can't say that being GF is 100% the reason my daughter is healing, but her seizure journal proves she is improving. Doesn't mean I am going to play games with adding back in poor nutrition just to prove my point. Luckily I am meeting more doctors that want nutrition to be the first step in her health care.

I looked into thyroid as well, because of the fact so many women have seizures related to their hormones. My research took me to adrenal fatigue. Seizures are connected to adrenal fatigue. There is a thread here on that subject.

What I learned about coconut is that it is helpful in regulating yeast and bacterial balance in the GI system. Intestinal health is connected to our seizure threshold.

It is my opinion that this is all new annecdotal evidence and most doctors don't accept that. You must follow your instincts and what is TRUTH for your situation. The textbook cases are not the only paths to follow.

[KelVarQ]

Hi Robin,

Thanks for replying and I do hear what you're saying. However, I think it's important for the doctor to keep me GF and then take me off during the EEG. That's kind of the norm during an EEG except the doctor will weane you off medications (putting the patient in harms way). In this case the GF diet is my form of medication. I was actually happy that he would even consider doing an EEG to ensure that the GF diet is actually working for me. This is not really for me to validate myself since I know it works but I can't imagine any doctor who's just going to take my word for it and assume it works for E. He's obviously willing to consider the GF diet but must validate it before he would be willing to help others and I agree with that. The whole idea of me telling him the GF diet works is so that he does recognize it. And for me, like I said, I feel there's 1 missing link since the GF diet works (from 6 seizures a week to maybe 3 a month) and I need to find that missing link (perhaps thyroid, don't know yet). It could very well be me accidentally having gluten since it appears to be in just about everything, but I have to be certain.