Vagus Nerve Stimulation

[Rachel]

HI all,

I just got my VNS on the 20th of Sept.

Man what pain that caused.

It is still at its lowest setting and I am still getting used to it going off. 30 seconds on and five minutes off. I get tingling in my throat or I cough and everytime I go hoarse.

IT is most annoying when I am on the phone and it goes off and I get all hoarse and the prson can not undessrand me.

well let me introduce myselt tp all of you.

I am Rachel and I am married for 12 years and hace 2 kids. I have epilepsy that has been medically intractable for 5 years and it just got to the point where my neuro had it and put this in. I have Frontal lobe epilepsy

so I do some pretty bizarre things.

I am 34 years old.

Can't works or drive ore even ride my bike. I have to wear a helmet, because I do have oretty abd falls. For some reason I have Drop Attacks thrown in for excitment.

I weear a magnet on my wristall the time I even go to bed with it on my wrist so if I feel an aura I can stop it.

I have seizures both at night and during the day at random. No pattern.

Talk later,

Rachel

[vin1969]

Hello Rachel,

I guess it will take some time to get use to VNS. My question is have you noticed any improvement in your condition? They will probably have to adjust it, so that dose is effective. I wanted to get ECT; but the doctor doesn't think it would be helpful for my condition. Of course, I disagree, especially after reading his research article on bipolar illness and ECT treatment. I guess I will stick it in his face; maybe that will make me feel better.
However, if the VNS is effective for Bipolar illness than, I guess, I would be will to undergo this procedure! I have to seriously look into it before, I decide to elect this treatment option!
Tell me how you doing with the next week or so? Hope it works effectively!
Vinny

[Rachel]

THe VNS is only approved for DEpression and Epilepsy, NOT bipolar.

ECT is rarely used anymore.

IR reks your memory and you.

NOT a cool thing to want to do.

HE might say yesto the stimulator is you lean towards the depressive sts rather htan the manic stste.

I will keep in toucch with you.

Right now Ineed to take a pain pill for my pain.

see ya.

rachel

[Scott]

Good Morning,
My 31 year old son got his on the 15th of October. He is a special needs man and does not speak. When you mentioned pain ,was it from surgery or from the stimulator going off? If was from the surgery was pain level do you have on a scale of 0-10. Ten being the worse.
Thank You
Scott

[Rachel]

Scott, The pain was from teh surgery. It was in the neck mainly adn Iwas warned about it before hand at my surgical consult.

I hadd a nerver block, adn 5 shots of Morphine through my IV.

The implant doesn't hurt at all. On a scale of 1-10, 10 being the worst, iwould haveto give it a 10 right out of surgery. After I was ready to go home I would give it a about a 4.

I was sent home with Darvacet.

IT wasn't pleaseant at all.

IT runs on cycle of 30 seconds ON and 5 minutes OFF.

I wich we can e-mail each other and I could give you way moere info on the VNS.

Rachel

Mine has been turned up 2 times already, and I have not had any Grand Mal seizures since it was implanted on sept 20th. I stiil have Drop attacks, absences, TONics, and several more types to get rid of with it. IT got tothe point of being medically intractable. meaning they woudln't respond to drugs anymore.

I take 3600 mgs of Neurontin, 400 mgs of Lamictal, 350 mgs of TOpamax, and 3 mgs of Klonopin. Ativan when needed.

[aladley]

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