Good article about Etiology and treatment

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Good article about Etiology and treatment

Postby jamber on May 3rd, 2011, 3:23 am

Please, read it. It is from the Journal of Neurology:
http://www.neurology.org/content/69/22/2045.short
Peripheral nerve hyperexcitability due to dominant-negative KCNQ2 mutations
The full text is avalaible online but i don't know how to put it online.

Page number 4:
Treatment with carbamazepine was unsuccessful and was discontinued due to a rash, but lamotrigine in a dosage of 200 mg per day was of some benefit.

Page number 9:
PNH is commonly treated symptomatically
with anticonvulsant drugs. Retigabine is an anticonvulsant
specifically enhancing KV7 channel
activity, which is currently under investigation in
phase III clinical trials for the treatment of focal
epilepsy. Retigabine induces the opposite of the
two myokymia-causing mutations, that is a hyperpolarizing
shift of the activation curve of KV7
channels resulting in a stabilization of the membrane
potential.37-39 Our results clearly showed
that the pronounced depolarizing shift of the activation
curve caused by the R207Q mutation could
be reversed by retigabine resulting in an increased
current amplitude at physiologically relevant subthreshold
voltages.
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Re: Good article about Etiology and treatment

Postby msm on May 3rd, 2011, 3:51 am

I always thought this drug would work for PNH and have been following it here in the US for a long time. Unfortunately they are slower about approving it at the FDA than the European nations but I definitely think it would help a lot of people on this board. I take Lamictal (lamatogrine) and am currently at 200 mg a day and see a good improvement in my symptoms. Hopefully the retigabine called ezogabine here in the US will be released soon. Maybe our neurolgists will see the benefit of it for pnh. Thank you for posting this article.

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Re: Good article about Etiology and treatment

Postby chicagobfs on May 3rd, 2011, 11:55 am

Msm what about side effects with lamicital ? I'm somehow afraid to try... But I guess will have to neurontin doesn't do much at 1000 and I don't wanna go higher:/ also this new drug is already in some countries in Europe, hopefully somebody will try :)
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Re: Good article about Etiology and treatment

Postby msm on May 3rd, 2011, 1:06 pm

Chicagobfs no side effects can cause a deadly rash but they titrate you up slowly. Most neuros do not want to give this drug for bfs but I flew to New Jersey to Dr. Tamoush who wrote the book on bcfs in this country so I got it. It was worth the trip but now I have to fly out thier once a year. Totally worth it.


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Re: Good article about Etiology and treatment

Postby Barbie800 on May 4th, 2011, 3:52 pm

I still don't understand why neurologist don't want to prescribe Lamictal for BFS. I assume the rash you are talking about is Johnsons Syndrome? I just saw a story on this where a girl took Motrin and she got this. Her skin burned off her face. It's kind of scary but I think it can happen with just about any drug. It's just the the Seizure meds are more prone to it.
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Re: Good article about Etiology and treatment

Postby msm on May 4th, 2011, 9:10 pm

Yes Leslie you are right it is Steven Johnson sydrome and yes you can get it from even a simple aspirin which is why I was not worried about that side effect. I think they don't want to prescribe it because it is an off label use for this and most doctors don't want the liability. However Dr. Tamoush having specialized and written papers on bcfs knows that our sodium and potassium channels are messed up so he likes to use sodium channel blockers for this particular condition and more importantly is not afraid to. I am glad I took the chance and even had to fly 1200 miles to do it as I have regained more of my old life than I had for the past year and a half.

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Re: Good article about Etiology and treatment

Postby Taylor on May 4th, 2011, 9:33 pm

msm,

Do you have muscle stiffness as one of your symptoms? If you do does the medication help alleviate any of the stiffness? I take magnesium and Zanaflex as needed but the muscle stiffness in my hamstrings is by far my worst symptom.

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Re: Good article about Etiology and treatment

Postby msm on May 4th, 2011, 11:59 pm

Taylor, yes it does help with the stiffness. I also take gabapentin 1800 mg 600 3x daily but the lamictal has been a great medicine to relieve my stiffness and cramps. He also gave me zanaflex but I only use it at night when I am really crampy in my legs. Feel free to pm me if you want any more information about the lamictal.

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