Pseudo seizures for 2 years and getting worse

[SJLCOPE1797]

Thanks for replies, Robin and Norm.

Robin, I have been to Dr Lam's website and even checked that he does hold a real MD license. I was all set for a phone consultation but when I read the terms and conditions it offered no privacy at all. I do not want the whole world to know my name, med problems, etc, although they assured me they woulld never do that, I go by what is in writing not what someone says. Appt was cancelled as a result.

Norm, I have been off Xanax for about a year; been off Valium for 3 weeks.

My one saviou in all tis was rnning / jogging, but I have not run since the Thanksgiving marathon in Atlanta - too wiped out by meds. All right, the cold weather had something to do with it as well. Hope toget back to it, meanwhile will go day by day on the newest med coctail they gave me - Depakote, Zoloft, and Ativan for seizure episodes.

TTYL

Steve

 

[Endless]

Hate to bring this up, but Dr. Lam is no longer licensed to practice medicine in his state of California. http://licenselookup.mbc.ca.gov/licenselookup/lookup.php?LicenseType=G&LicenseNumber=47885

This is highly unusual - doctors don't usually let their licenses lapse even if they are currently taking a break, because of how hard it can be to get reinstated and the affect on their reputation. Even if they move to a different state they usually keep their license active in their old state. It's impossible to forget to do it - they send multiple reminders and notices. I wonder why he let his go?

If he practices medicine now that his license has lapsed, he will be subject to disciplinary action, up to and including permanent loss of his license and/or jail time. It's a felony. The exception is a practice that is strictly natural healing with no medical advice, which is now allowed: http://www.californiahealthfreedom.com/californiah/htdocs/documents/providers.asp

Still pretty fishy.

 

[RobinN]

well.... his license is lapsed for 2 business days. Not highly unusual for paperwork to not be updated.

I like what the man says. I am beginning to question more and more the activities of medical practitioners that are snuggling up to the pharmaceutical companies. The piece of paper is something to consider, however it is also not etched in stone that they are the best source of current information just because they are registered or have a few letters after their name.

 

[Endless]

I agree with that wholeheartedy! I question everybody, actually. I feel I'M responsible for my healthcare, and to ensure it is appropriate and safe. It doesn't matter what initials or credentials are after their name.

If any practitioner (M.D. or N.D. or otherwise) recommends a treatment, I research it thoroughly before I do it. I appreciate and respect their expertise, but I also think people have conflicting priorities, or most likely a harmful thing is recommended because it is impossible for practitioners to be completely read up on the latest research on all topics. If I find questions about what they recommend, I print out the research and bring it to my next appointment to help me in asking questions. Or if it is anecdotal evidence, I bring that, too. Toward this end, I am IN LOVE with the "AskaPatient" website that Robin posted in another thread.

For example on a health issue I'm watching to keep my body safe... one of my docs recommended a supplement, and that supplement checks out okay. But there are some very recent studies that link a common componant of supplements and food packaging to genetic damage and cancer. (Yikes) So I set out to find a brand without it for all my supplements. I'm only going to buy if the manufacturer will guarentee it's not in their supplements. Manufacturer's haven't even answered my email inquiries, which leads me to believe either they do include it in their supplements, or else they don't know if they do. The research is so recent that they are either scrambling to get it out of their formulations, are avoiding admitting that it's in there, or they are actively doing research to find out if their vendors have it in the ingredients they supply to them. I'll let you all know when I get some answers.

***Edit: Don't panic, everybody. Not to go all academic on you or anything (I can see your eyes glazing over now).
The additive linked to genetic mutation and cancer is Nano-particles of titanium dioxide. It's used in cosmetics, food, and supplements. Fine in regular molecules, not safe in nano particles, which due to their nano form are super-tiny and can affect body cell structure and also cross the blood-brain barrier, the lungs, and placenta barrier in mice and humans.

Nano particles in general are a hot topic right now, with concerns around genetic mutation and cancer as well as other toxicity. Nanos are exploding in their use in products we use and eat every day. The biggest wild card in this is because of the way an element's properties and behavior changes in nano form. Once opaque substances can turn transparent, once safe ingredients can go toxic. Even if you want it to go somewhere in the body, it may behave differently than the regular sized particles when it gets there. And once genetic damage is done, it might never be reversed and boom, years later cancer.

Because substances' basic properties change when converted to nano form, until there is more research into which are safe and which aren't, I'm sure going to stay away from the stuff. If you find cosmetics or vitamins that say they don't contain this stuff, will you pass it along to me? I don't know how we'd know if it does or not, even if we write in and ask. Current laws don't require disclosure of its use. *** Edit over.

Something I love about the medical licensing sites is you can not only check up on a license, you can see if there was disciplinary action. In most states you can also call the department of health and see how many times they have been complained about or sued, and for what. You better bet I did that before I had surgery! Spme states you can look up any licensed practitioner, including N.D.s, massage therapists, accupuncturists, etc.

I've only got one body and it's a sensitive/reactive one at that, so I'm careful what I put in it or who takes a knife to it!

 

[SJLCOPE1797]

Nice job! I could have sworn it expired 12/31/10 whenI checked, but I guess not.

In any case, they were trying to sell me on a nutrution plan to combat adrenal fatigue syndrome. I htik there is a reasonable chance that Dr Lam and Co is LEGIT; I was just uncormfortable with the terms and conditions that I interpreted to say they ould share my info with affiliates, etc, meaning anyone.

Perhaps if they amend those conditions I might give them a try.

 

[Endless]

I'm curious why he would have those terms and conditions? It's very different than a medical clinic. Do HIPPA rules not apply? Any experts out there with an opinion?

 

[RobinN]

Nice job! I could have sworn it expired 12/31/10 whenI checked, but I guess not.

It is only April. If you read December (12.31.10) that is still a few months away.

I don't look to his site to buy anything, but I do enjoy his newsletters and have learned quite a bit. I never take one source when I study an idea. I always do a google search and approach it from many directions.

 

[Ruth]

Dear Kidbusy3,
Thanks for the info. I have also had video EEG monitoring done at a hospital and they said no epilepsy - "it's a conversion disorder".

Personally, I have in inner sense that running marathons is my answer, as ithas helped in te past, but not eliminated my pseudo eizures. But whatever works for anyone, then go fo what works.

If running marathons helps you then go for it. I watched on USPorts on TV today where they were doing a triathelon. An 80 year old man crossed the finish line. There was another person with Lou Gerigs Disease and he crossed the finish line. A lot of healthy people did not cross the finish line.

We cannot give up, we have to think positive and have a good attitude. We can do what we want if we are determined.

Ruth

 

[emaa]

Steve:
This is a long shot as the thread is over a year old, but I found your comments when searching for any data on patients using acupuncture for non-epileptic seizures. Please reply if you get this, I would be interested in your experiences.

Regarding NES (I usually drop the "psychogenic" or "pseudo" when counseling patients because they are very REAL... real enough to recommend seizure precautions), the best therapy appears to be CBT. In your case it sounds like it hasn't worked, but I wonder if the therapists have been hammering the event that appears to have triggered it all... the decision left to you to discontinue your brother's life support. In your specific case, a more focused approach to the survivor guilt associated with that horrific experience might shed light on the inner reactions that trigger your NES. The phrase I use with my patients as we discuss the results of their EMU stay is that NES are "a maladaptive coping strategy to stress". You may have heard that phrase before. You have very clear triggers (computer frustrations), that seem very amenable to shifting your response to a healthier coping strategy... perhaps incorporating your running hobby into these stressful work situations? It sounds like you've been through the ringer, so forgive my intrusiveness, but after reading your thread, it sounds like a lot of practitioners have you spinning in circles.

-Ed

 

[SJLCOPE1797]

Yes, it hsa been over a year and things are quite different. I had a full year of now seizures, but now they are back. A year ago I had an accident, was in a coma 10 days and in the hospital for another month, and out of work since.

On top of it, I lost part of my memory, but not amnesia. Then I realized there were no more seizures so I concluded it must have been stress from my job. Sorry to say I had 4 seizures in the past month, but there were stressful things going on, though not from my job because I am still out of work.

So maybe all the doctors were right all along that it was just a reaction to stress, but there were other stressful periods in my life many years ago that never caused a seizure so who knows.

Steve, still recovering and trying to remember

 

[Malla]

Hello Do your seizures continue throughout the days weeks or months without stop or do you have periods where you are not suffering from the PNES? Is there anything other than stress that triggers your seizures? Good luck, Steve! Hugs Malla

 

[SJLCOPE1797]

Malla,

I had a year of no seizures at all but the conditions are not too good - I had an accident a year ago- fell off a bixycle and hit my hear on the pavement, was in a coma, etc but I survived and am not able to work.

The good news is that the seizures went away so I conclude that it really was caused by stress from my job, but unexpectedly I had 5 seizures like 1 month ago, wound up in the ER, saw a neurologist, had an mri, and nothing explained it other than stress - not work stress but there was some stress because our area was hit by tornadoes a few months ago, but no damage to our house.

They seem to have left me alone again, and I am no longer on all the meds like Xanax, Valium, etc. So the bottom line is that I feel blessed - I got a second chance at life, and even if I have another seizure if it is only one per year from stress I will accept that and not freak out. I really think that the worst is behind me.

Thank you for posting.
Steve