You'll never believe what happened with the new neuro today!

[Tilei]

First and foremost I want to thank everyone here who has posted about your current treatments, supplimentals, and augmented therapies. If that information had not been posted, I would not have been as nearly ready for my visit with the new neurologist today.

The visit started out as anyother neurologist visit, all background stuff. This time though I supplied the neurologist with a written diary of sorts regarding my episodes. As she reviewed this brief documentation she asked me very specific questions about each incident. :shock:

She then moved on to the typical paperwork of the dreaded check boxes. We got through that mess and began covering medications, which would have been a short list except for my list of 'new suppliments' I started. As we discussed my use of suppliments to help support proper brain chemistry she was impressed with the body of knowledge and effort I had put into my self-prescribed regimen. She made no negative comments about what I had put together nor anything about the dosages.

As we continued to discuss my situation and review my list of questions(yes I had 1 1/2 pages of questions) we came to one question in particular. anti-epileptic drug medications and I had written after it, if need at all at the present time . Her response was that it was a good question given my current status. We worked our way through the rest my list. And as we closed, I asked what about medication as she really hadn't hinted at anything she was thinking about prescribing. She then asked me right back if I wanted to start medication? I of course indicated, no not if it isn't necessary. Her response was she agreed :o . In fact, she felt due to the type of seizures, the infrequency, time they occured etc. she would not start medication unless things turned worse or I had another 6 seizures in the next 3 months. She went on to say I should add Folic Acid and Vitamin D to my regimen! :P

I let her know I was surprised by her answer. Her response was obviously I was concerned about what is happening during these episodes and was well informed regarding the idea that extreme stress is messing with my brain chemistry. Armed with the knowledge I have been taking logical steps to help myself and it seems to be working. She did provide me with a few sample packs of Keppra in case things turn worse, but to only take 1/4 the dose recommended if needed. And if needed means if I start to have several seizures in one night, which has never happened.

She still wants to do two types of EEG's 3 months apart, but doesn't expect to see anything.

What's the regimen?

1000 mg. Flaxseed oil (2x)
30 mg. Chelated Magnesium (1x)
100 mg. 5 - HTP (1x at night)
1000 mcg. B-12 (2x)
500 mg. Taurine (2x)
10 mg. Co-Q-10 (3x)
400 IU Vitamin E (2x)

*Now will be adding Folic Acid and Vitamin D to the regimen

[Bernard]

Wow, sounds like you found a keeper! Doctors who are willing to listen and work with patients who are motivated on their own behalf are wonderful.

Stacy's doc recently "prescribed" her to take some vitamin D as well. Let us know how it works out for you.

[lindy]

I think that it's wonderful that you have a doctor who will listen and is willing to follow your lead! I've always had to play the bully and refuse to do anything just because a doctor says so. Needless to say, I'm a very difficult patient! What you're doing sounds alot like what I'm doing except that I take 30 mg of CoQ10 once a day and, while I take 100 mg of 5-HTP daily, I take it in two doses of 50 mg each. Did the doctor say why she wanted you to add vitamin D? Also, 5-HTP needs B-6 to work properly. The capsules I get from Puritans Pride contain B-6 and I also take a multivitamin daily so I get plenty of B-6.

[Tilei]

Hi Lindy,

I also get my HTP from Puritans Pride! LOL. So, I guess we're both getting the right B-complex vitamins too.

Calcium (Vitamin D) is involved with all nerve transmission between cell membranes. This needs to be sufficient for optimal brain functioning. Her thinking was the addition of Vitamin D would support the function between cells in the brain and certainly wouldn't hurt me as I am a middle-aged woman anyway.

[lindy]

I spend alot of time outside and I don't slather myself with lotion (I'm cautious instead and very wary) so I had always figured that I received plenty of vitamin D from the sun. Don't you just love Puritans Pride? I've been doing business with them for years and have never been disappointed.

[Tilei]

I'm afraid I have not been doing business with them for long. As I started putting together the regimen to support my mild form of epilepsy, I noticed it was going to be $$$ at the rate I was going. I had heard about Puritans Pride several times and even got a catalog from them a while back, but never purchased anything.

Knowing I wanted good 'stuff' I could count on being real quality I went the the PP website. It so happened they were having a 3 for one special on just about everything I wanted to try and there reputation is good, so they got my business. I am set for about 3 months and will be monitoring how things go along with the guidance from my new neurologist.

Plus I didn't want to have to go to one of those nutrition stores and fumble around the store trying to figure out their stuff. I'd been in one once before and was horribly confused by all the options. It was much nicer to sit in front of the computer type in the what and mg and have it pop up on the screen.

[lindy]

Consumer Reports rates Puritans Pride very highly and you can't beat the prices. I just loaded up on the 3 for 1 sale. Vitamins and supplements aren't cheap but they sure beat the price of a prescription. When I was on Depakote, I was spending $200 a month just for that!

[Tilei]

I saw my neurologist yesterday. And I have to admit I am dissapointed again. When she came in we chatted for a little bit about a conference she had been to regarding insurance etc. It must have been one of the on-going series events.

Anyway, we finally got around to how I've been doing. Based on some of the things we discussed I decided to NOT tell her about the incident several days ago with a soy drink I had consumed. Given I have not had another seizure in 8 months prior to the soy drink and I don't intend on having anymore soy...well I just wasn't comfortable giving her that information.

Once she got done talking with me and doing her exam, she said she wanted to start me on medication! Now, I asked her why and she stated that as she is learning about things in the profession her treatments she is recommending are more conservative. Now I do want to give her the benefit of the doubt on this, but nothing I said or did indicated a real need to start medication. Her response indicated the course of treatment being recommended had nothing to do with my physical exam or really with me.

She also mentioned in the course of her work, 20+ yrs. she has had 3 patients go status. I am wondering if she lost one recently. Some things we talked about involved how to get treatment to patients when the insurance company denies the claim or treatment method. We talked about the cost of care in general and how she discounts 'cash' clients because she doesn't have to play around with the insurance.

Perhaps I just caught her on a bad day. She didn't give me a 'script for medication. And that was because at this point I didn't give her a solid reason to 'force' it on me. I really do like her, even though I chose to let the Soy Drink incident slip by not telling her, I do trust her.

What I am concerned about is there seems to be a lot of pressure on her from outside the medical profession.

PS. She wants me to go for another EEG.

[lindy]

Doctors are under alot of pressure from the drug companies to push their pills and,unfortunately, alot of doctors give in to the pressure because of the research money and whatever that the drug companies give them. I'm glad that your doctor didn't give you a 'scrip. After all, if her new interest in medicating you has nothing to do with you or your physical condition, why would she want to push a pill on you? Know what you mean about not mentioning the soy incident. I've had the same temptation - to just let certain facts slide - and it's really tough to own up to it, especially if your doctor is not backing what you're doing. Since I stopped taking an anti-epileptic drug, the rare seizure I have had is something that I am always tempted to keep out of my medical records. I've been lucky though because, over time, my doctor has come to realise that an occasional seizure doesn't mean that what I am doing isn't working. She now acknowleges that the situation is a great deal better than when I was on a drug. Since you know that the soy set off the seizure, it might be good to mention to her that you have an intolerance to soy though.

[Bernard]

I'm still not convinced that soy was the culprit as per your post/thread over at Braintalk. Have you called the shop to see if that drink contained any herbs (or what all was in it)?

[Tilei]

Calories 225
Fat 6%
Cholesteral 0mg
Carbs. 11%
Protein 40% 20 g
Calcium 50% (500 mg)
Phosphorus 40% (400mg)
Sodium 10% (250mg)
Potassium 400 mg
Iron 3mg.

1 drink equals 6 cups of soy milk. :shock:
160mg. of soy isoflavones and 1000 mg. of soy saponins.
Real coffee powder and cocoa.

*does not contain any dairy, peanuts, gluten, wheat, yeast, or egg.

[Bernard]

OK. I thought the drink was a coffee substitute, but it looks like it had both coffee and cocoa. That's a lot of caffeine - which may be the real culprit.

[mhamilt4]

Tilei

You mentioned that you also take the 5-HTP from Puritans Pride, so you are getting your necessary B-Complex vitamins, but I think I'm confused. Does the HTP have enough B-complex so that you don't have to take an additional B-complex supplement each day?

[lindy]

5-HTP needs B - B6 in particular - in order to be converted into serotonin. That's what I like about the Puritan's Pride version. It comes with B6 and valerian in the same capsule. What kills me is that there isn't enough valerian in it to make it worthwhile but it certainly sounds good to some people.

[Stacy]

Hello Tilei,

I'm glad to see that you are following your own ideas. I'm glad to see you listening to your body. Good Job!

I too have been trying to listen to my own body... thing is...Bernie insists that I listen to him!

I've been conducting a small experiment on myself. I write down meds, foods, RR visits, activities, ect. My hypothesis for all of this is that I don't need drugs! I just don't think they are necessary right now. If I get too stressed out, I'll take them. Otherwise, I'll mind my sleep patterns, my body, stress, and see what happens. I can't drive anyway right now, so this is a good time to start. I'm also watching my anemia, as I have all the symptoms of severe anemia. So does this mean I'm an anemic Epileptic???

Yes, Bern... I'm still taking my Dilantin, but think I can quit. Also, during my last period (which is when the seizures show up), I got the cramps in my legs and my body was very heavy, first thing in the morning. I was able to tell Bern about it, and he rubbed my legs and arms... possibly preventing a seizure. Yay.

[Bernard]

... thing is...Bernie insists that I listen to him!

[joke]thats because I'm always right[/joke]

... My hypothesis for all of this is that I don't need drugs! I just don't think they are necessary right now. If I get too stressed out, I'll take them. ... I'm still taking my Dilantin, but think I can quit.

Dilantin doesn't work like an aspirin. You can't just take them when you feel a need. You need to maintain a therapuetic level of the medicine in your bloodstream for it to be effective.

Based upon your recent seizure history, I'd have to agree with your doctors that you need the drug right now to control the seizures. Sorry sweet heart.

[Tilei]

Please don't do anything rash! Remember I am working very closely with my neurologist and everything I do is with her blessings! Between her and I there are guidelines and those must be respected on both sides.

[Tilei]

Plus I just came from another doctor for a different issue and he said that the seizures my not be caused by epilepsy! He is not sure yet, but has a strong suspicion the other issue is the culprit! Hence, why my diet and supplements may be working!

I didn't want to say too much here as the situation is still unknown and I need to contact the neurologist with the new information. Hopefully in the next several weeks I'll know for sure. Plus I have another EEG scheduled this week too.

I have personally found the situation with me very frustrating from being misdiagnosed last March with TIAs, to drs. not responding to my calls regarding an allergic reaction, to being able to control things with supplements, to now potentially still being misdiagnosed. It is all a very amazing journey of incompetence. And I have two world class hospitals in the area....dang.

[Bernard]

Doctors are human too.

Cheer up. They still don't agree on what causes the "common cold".

[Tilei]

No spikes, no waves, normal. Now, to bed.

Things continue to be puzzling for all of us.