Discussions By Condition: Nerve conditions

Recent changes in medicine have yielded better results

Posted In: Nerve conditions 5 Replies
  • Posted By: jordosaxman
  • February 24, 2009
  • 00:26 AM

This is my first post, so welcome wrongdiagnosis!

This post contains spoilers for House Season One, Episode One, so if you haven't seen it...I need to quote from it to explain why I did what I did so if you haven't seen it, I apologize.

I have had seizures for 7 years now. They began when I was 16, so it was diagnosed as "juvenile-onset epilepsy". Nothing has treated the seizures to the extent that they stop. I generally go 6 months and then have another seizure. I've tried Neurontin, Keppra, Lamictal (the one I was on until about a month ago) and many others. My first seizure happened while on the road with my dad who is a truck driver. I've been all over the eastern US including Texas (right by the border) and as far north east as (rural) New York.

While watching the first episode of Season 1 of "House M.D." I saw a woman who had similar problems talking that I do right before a seizure, and so I took an interest in it. Turns out that she had neurocysticercosis, an infestation of the brain with a tape worm known as Taenia Solium, or the "pork tape worm". I had spent a lot of time in Texas during the months before and I was desperate for an answer to my problem. I do tend to eat all of my meat medium well, and the symptoms fit. I tend to get eye infections in my right eye, and many other symptoms associated with neurocysticercosis fit my current problems. I've been to at least 4 neurologists and none of them has been able to find a medicine that will fix the problem.

The treatment for neurocysticercosis is Albendazole and/or praziquantel along with an anti-inflammatory such as prednisone to prevent swelling when the cyst breaks down and the worm dies. I ordered the meds as needed, researched the dosages for (months!) and then decided to treat.

I don't mean to be rude, but I didn't come here to be scolded. If you have intentions of fussing at me for ordering meds when a doctor refused to prescribe them to me, despite my reasoning, you have no business on a forum that was recommended to me by people as a place that helps people. Where I got the meds isn't any of your concern. If you would like to know how much I took, feel free to ask if you feel it's relevant. I treated myself according to themayoclinic.org's treatment regiment for neurocysticercosis.

3 weeks have passed now. I'm off of my seizure medicines, am having no gran-mal seizures and no more swelling.

So HERE are the symptoms:

* I only have peti-mal seizures when I get less than 9 hours of sleep. I usually end up falling/tripping.
* mild confusion at times when trying to read.

As long as I get at least 9-10 hours of sleep I'm fine. If not, the peti-mals start.

I appreciate everyone reading this and am anxious to hear your comments, as long as they aren't condescending concerning where I got my meds. They came from a very reliable source, were sealed, were taken correctly and will be tapered correctly.

Thanks and God bless.

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5 Replies:

  • So no one has any ideas as to why I'd still be having an occasional peti-mal and chronic fatigue symptoms?
    jordosaxman 3 Replies Flag this Response
  • Hi jordoxsaxman, I think its fantastic that you have improved things for youself, I believe we all have to do what we have to do, I'm sure you have made an informed choice & it has paid off. Regarding sleeping 9 hrs well if thats what it takes then great, better than suffering alot of seizures. I don't know anything about chronic fatigue or seizures so sorry I can't help you there. I could google it, but you don't need me pretending to know something that I don't know much about, as I'm sure you have done yourself.(I mean googled it) lol:D I'm glad you have the get up & go to help yourself, so well done. Hopefully some here who know about chronic fatigue & seizures will see this and give you some advice. Best wishes..........:)
    Tootsie 628 Replies Flag this Response
  • Thank you for responding Tootsie. I went to my neurologist to ask him what he thought and he said the spot on the MRI was simply a part of a membrane, but was intrigued by the fact that I haven't had any more grand-mal seizures. I haven't had any seizures of any size/type since I last posted, so I just wish I could find an environmental cause or something.
    jordosaxman 3 Replies Flag this Response
  • Hi jordo.....I'm a great believer in the fact that as you have improved so much, does it really matter what the cause was, its how you move on and improve your life that matters, no point really in looking back its not that it would really change anything, would it ? Here is something I was once told, "If you walked down a street always looking backwards you would keep bumping into things, so better to look & move forwards" this, Ive found to be very true. I'm sure if there is some outside trigger you will soon come across it again, but then again you may not, so just continue moving forwards & enjoy your life, if you do find it then avoid it. Life is precious, we've only got one, so we have to do what we have to do & not dwell on "what if's" & "if only's" and when we are faced with things we've got to make the best of what ever comes our way, there's usually some good comes out of bad, even if you don't see it at the time. Life teaches us things, it taught me how to be a survivor. So continue doing what you are doing, keep moving forward & if there is anyway you can help the chronic fatigue or learn a way to live with it, do it........... own it, don't let it own you. I'm sure you have good days, enjoy them & when you have a bad day then rest & don't beat yourself up over it, tomorrow is always another day. I really hope you remain seizure free, & if you do take another one, dont let it get you down.....for all you know another one may be your last one, and so on......... never loose hope. Best wishes :)
    Tootsie 628 Replies Flag this Response
  • While Tootsie's post was both moving and meaningful...new symptom :(My tachycardia is back. After researching, my question is:Might a problem with the adrenal glands cause tachycardia and myoclonic jerks?The tachycardia has no pattern that I see correlating to eating, sleeping, etc. The myoclonic jerks happen when I wake up early or don't get enough sleep still. What are some other symptoms for adrenal problems?
    jordosaxman 3 Replies Flag this Response
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