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Vagus Nerve Stimulation


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#1 Simba Cub

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Posted 06 December 2007 - 03:35 PM

Anyone here had VNS? Tell all!



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#2 In_Remission_dizzyfaerie

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Posted 23 April 2008 - 12:32 AM

i'll have had my vns implant for two years next month.
while my actual dx is bipolar, depression has always been the worst of it. i started seeing shrinks when i was 12. the drugs started when i was 15. i've been hospitalized three times, and have been on an astounding list of medications, all of which started off promising, only to taper off within a few months to a year.
i was assigned to my current doctor after my last hospitalization four years ago. he kept trying different drug combinations, and while he was able to control my manic symptoms, he still couldn't manage my depression. the 90mg of cymbalta i was on was ok, but not great. plus, i knew my track record with ad's. i wasn't feeling too hopeful.
as soon as my doctor got the literature on vns he passed it on to me. he was kind of excited about it since it's such a new treatment as far as depression goes. i mean, whenever you mention it to most doctors they still have only heard of it as an epilepsy treatment. i wasn't so sure about it. truthfully, it scared the shit out of me. but in the end i supposed i had nothing to lose. i had watched the dvd that showed these people telling me how this implant changed their lives, and how they were able to reduce some of their medication dosages. they hardly had any scars. i thought about how, if nothing changed, i'd probably be trying yet another new ad that would just end up failng me. i decided to go for it.
i cried while i was laying there waiting to be taken to the operating room. i felt just miserable that things had gotten to this point. i mean what the hell? i was about to become a freakin' cyborg!
it was outpatient surgery, so i was home in just a few hours. i was a little sore, but it really wasn't all that bad. i was really freaked out when i took off my bandages, though. i looked like frankenstein's monster. i had an incision along my neck (where the wires are) and another, vertical incision on my chest toward my shoulder (where the pacemaker-thing is). i have a tattoo on my chest, so my surgeon was actually quite proud of himself that he was able to avoid cutting it, lol. i was all bruised purple and green. for the next couple weeks every time i left the house people stared at me like i had been in some horrible knife fight.
it was two months after surgery that they actually turned on the implant. they had me put this little paddle thing over my chest where the pacemaker-like part of the implant is (you can feel it through the skin - it's kinda creepy). the paddle is connected to well, basically a palm pilot, which they use to adjust the current. when they turned that thing on i thought i was gonna die. the best i can describe it as is a kind of buzzing or a fuzzy feeling in the back of your throat under your tongue. it was just bizarre. now, this thing is supposed to go off for 30 seconds every 5 minutes. it was gonna drive me out of my damn mind! they kept telling me i'd get used to it. all i could think was , "bullshit". the feeling was awful and every time it went off my voice went all hoarse and crazy.
well, by the time i had to come in the next week to have the current adjusted i had actually started to almost get used to it. of course once they turned the current up i had to get used to it all over again. it really wasn't so bad at the lower currents, though, once i got over the initial weirdness. the last two adjustments before i got to my theraputic current were actually kind of painful. they waited two weeks between those adjustments to give me extra time to get used to the feeling.
overall, i know i made the right decision. it's made a huge difference in my life. i was able to reduce the dosage of cymbalta. a few months ago a drug interaction was discovered and i had to go off my cymbalta altogether. so far i've been fine. i know that without my vns i wouldn't be functioning at all right now.
the worst problem i see with it is the shortness of breath i get when it goes off. if i happen to be going up a few flights of stairs when it goes off i end up wheezing pretty badly. it also cuts of my breath when i'm sleeping i guess, because i'm told i make a really strange squealing kind of sound, but only for that 30 seconds that it goes off. if i need it not to go off so my voice doesn't go funny, or for whatever reason, i have a magnet that i hold over the implant in my chest. the magnet will keep the vns off as long as i hold it there. weird stuff.
sorry for the incredibly long, rambling post. :mad:

#3 junky69

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Posted 23 April 2008 - 10:46 AM

i'll have had my vns implant for two years next month.


Glad to hear from someone who has the VNS. My neuro. has been pushing it for years. My last status seizure almost put me underground. I've spent time on VNS message board, but alot of bad news. Since I've had 2 brain surgeries I'm not fond of any surgery. It appears to be a big PITA for alot of epileptics. On the VNS board it sounds like the VNS works better for folks w/o seizures. Like I've always said, if it doesn't come w/ a lifetime guarantee I don't want it. I don't have the time to run & have it upped or lower 24/7, nor the battery replacement every 5+ years.
I hope it keeps working for you!
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#4 Jerod Poore

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Posted 23 April 2008 - 12:23 PM

i'll have had my vns implant for two years next month.

while my actual dx is bipolar, depression has always been the worst of it.


I think a lot of people out there with Bipolar II are getting VNS under a variety of depression diagnoses added on to the bipolar diagnosis.

i cried while i was laying there waiting to be taken to the operating room. i felt just miserable that things had gotten to this point. i mean what the hell? i was about to become a freakin' cyborg!


I can understand that. I would so go for surgery to get rid of seizures and mood swings, anesthesia awareness be damned!

i was really freaked out when i took off my bandages, though. i looked like frankenstein's monster. i had an incision along my neck (where the wires are) and another, vertical incision on my chest toward my shoulder (where the pacemaker-thing is).


1) You do know that you're now the envy of most 11 to 14-year-old boys (and some girls) across North America, right?

2) No need to decide on Halloween costumes any more!

i have a tattoo on my chest, so my surgeon was actually quite proud of himself that he was able to avoid cutting it, lol.


I like it when surgeons take art into consideration. I wouldn't care if he put his initials in the stitches if he did something like that for me!

it was two months after surgery that they actually turned on the implant. they had me put this little paddle thing over my chest where the pacemaker-like part of the implant is (you can feel it through the skin - it's kinda creepy). the paddle is connected to well, basically a palm pilot, which they use to adjust the current. when they turned that thing on i thought i was gonna die. the best i can describe it as is a kind of buzzing or a fuzzy feeling in the back of your throat under your tongue. it was just bizarre. now, this thing is supposed to go off for 30 seconds every 5 minutes. it was gonna drive me out of my damn mind! they kept telling me i'd get used to it. all i could think was , "bullshit". the feeling was awful and every time it went off my voice went all hoarse and crazy.
well, by the time i had to come in the next week to have the current adjusted i had actually started to almost get used to it. of course once they turned the current up i had to get used to it all over again. it really wasn't so bad at the lower currents, though, once i got over the initial weirdness. the last two adjustments before i got to my theraputic current were actually kind of painful. they waited two weeks between those adjustments to give me extra time to get used to the feeling.


"Side effects are mild to moderate and include shortness of breath, squealing like a piggy in one's sleep, talking like that Viet Nam vet on South Park and thinking that your heart is going to explode."

overall, i know i made the right decision. it's made a huge difference in my life. i was able to reduce the dosage of cymbalta. a few months ago a drug interaction was discovered and i had to go off my cymbalta altogether. so far i've been fine. i know that without my vns i wouldn't be functioning at all right now.


That's awesome that the VNS is working for you. I'm glad you let us know. We need more success stories for all kinds of treatments.

Thank you!
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#5 Rachel97

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Posted 09 September 2008 - 06:32 PM

There was an article about VNS in the local paper and my husband brought it up to me this morning. I would like to hear additional stories from people who have used it for depression. It notes a little over 50% success rate which scares me, as does having an electrical device implanted in my body. Not to mention the fact that you have to go in occasionally and have the batteries replaced. Another friend brought up ECT, so I guess it's electrify me week.

I've been treated by a pdoc for serious depression, anxietyw/panic, and agoraphobia for about 2.5 years. Before that I was taking an SSRI (Celexa worked best for me) prescribed by my GP. I've also been in consistent talk therapy and prn support groups specific to some of my triggery stuff since starting with my pdoc. I sort of feel like I'm just beginning to grasp how some of my personal issues and brain cooties (and their attendant meds) interact, and I feel that ECT and VNS are sort of nuclear options right now since I may be able to find a good med cocktail. Then again maybe I won't, or if I do it may take years as many of the posters at Crazy Meds experienced. And then it might poop out.

Also, the VNS is expensive and rarely covered by insurance, unless something has changed. Any suggestions as to what sort of criteria you need to prove that this is a medically necessary device?

Thank you, dizzyfaerie for sharing your experience with us. I look forward to more first person accounts of VNS for depression.
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#6 Rachel97

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Posted 10 September 2008 - 02:34 PM

UPDATE:

I talked to my pdoc today about VNS and ECT and he does not think those are good options for me.

The reason that it is getting some press down here is because there is a doctor in the medical school psych department who is running additional clinical trials. I don't know if they are still accepting applicants, but if anybody is interested and wants to see if they qualify, it is being done at the University of Texas Health Science Center in San Antonio.
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"My life happens to, on occasion, suck beyond the telling of it." - Buffy

Dx: MDD, GAD/Panic, agoraphobia, migraines, opiate dependency, Non-Hodgken's Lymphoma

Rx: Wellbutrin 300xl, clonazepam .5mg 1-2x/day, trazodone 100mg, suboxone 8mg
chemotherapy - Rituxan maintenance infusion every 12 weeks w/Ativan & prednisone
Phenergan, Zofran, Kytril prn nausea

#7 Jerod Poore

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Posted 18 September 2008 - 01:43 PM

The reason that it is getting some press down here is because there is a doctor in the medical school psych department who is running additional clinical trials. I don't know if they are still accepting applicants, but if anybody is interested and wants to see if they qualify, it is being done at the University of Texas Health Science Center in San Antonio.


UT is one of the top research centers for mood disorders in the US. As in top three. It must be something in the water in Austin. Trials, studies, etc. are frequently farmed out to satellite campuses.
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Current meds: lamotrigine 300mg, topiramate 325mg, buspirone 60mg, protriptyline 60mg, EPA 600mg, methylphenidate 5-10mg, lorazepam 1mg PRN
Past meds (likely incomplete): Abilify, clonazepam, desipramine, diazepam, Gabitril, lithium, Neurontin, Paxil, prochlorperazine, Provigil, Prozac, Risperdal, Seroquel, Serzone, Strattera, Trileptal, Zyprexa

#8 Rachel97

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Posted 21 September 2008 - 01:11 PM

The San Antonio campus is the medical school for the University of Texas. They don't have a med school in Austin.

The University Hospital here is not only connected to the med school (obviously) it's also the county hospital. The last time I went batshit crazy during an 8 day migraine I sought treatment there. I presented at the ER because it was one of those headaches that when they show you that stupid "pain scale" from 1-10 with the smiley faces your answer is I would rather die and I might take some action to make that happen. I thought that by going there maybe I could see some of the amazing specialists they have. Only not so much. I got treated like a psych patient at a public hospital, and I just have to say it was one of the most harrowing experiences I've ever had. I truly feel for anybody else who has had that experience, and especially for anyone who has to rely on "public" hospitals for care or are subjected to that against their will. They took all my clothes and personal effects away, including my shoes and wedding ring. I guess so I couldn't run away. I sat in the chairs for over 12 hours before getting a bed in triage. I was in extreme pain and kept asking when something would be done and was told that "I got myself into this and would just have to wait." I was kept without food or my psych meds for over 32 hours, and my pdoc called them and ordered them to give them to me because going off Wellbutrin and clonazepam cold turkey at the same time is really not cool. I finally got the WB, but they refused my clonazepam and treated me like a drug seeker for asking about it. However, I could have all the dilaudid I wanted. How does that even make sense? Anyway, as I was closing in on 72 hours they decided to discharge me while I was still crying in pain and vomiting. I was given one last nausea shot and sent home with an emesis basin so I didn't vomit all over the car.

And no, I never saw a specialist.

I realize I veered off topic there, so if this needs to be moved some place where we talk about how terrible public health care is for the crazy, feel free.

Edited by Rachel97, 21 September 2008 - 04:41 PM.

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"My life happens to, on occasion, suck beyond the telling of it." - Buffy

Dx: MDD, GAD/Panic, agoraphobia, migraines, opiate dependency, Non-Hodgken's Lymphoma

Rx: Wellbutrin 300xl, clonazepam .5mg 1-2x/day, trazodone 100mg, suboxone 8mg
chemotherapy - Rituxan maintenance infusion every 12 weeks w/Ativan & prednisone
Phenergan, Zofran, Kytril prn nausea

#9 In_Remission_taffy

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Posted 01 October 2008 - 04:24 AM

VNS wouldn't be right for my brand of crazy, but I know someone who has one. He is 7 and has Lennox-Gestaut Syndrome (yep, I'm mental and I look after kids with special needs). He was about 5 when he had the implant (at the time he was the youngest kid in Australia to have it which is pretty cool). It doesn't control his seizures much but it does reduce their frequency and severity, it's basically the only thing keeping him alive. His parents said that when the VNS was turned on, the most noticable difference was in his moods, not his seizures. He used to fly about in blind rages but now he's a really happy, easygoing little boy (of course that could be a side effect of the seizure control, I'd fly around in a blind rage too if I was having 10 to 20 grand mal seizures a day). It's difficult to know what his side effects are like as he is non-verbal and severly autistic but as far as anyone can tell it isn't causing him any suffering. He's allergic to most anticonvulsants (he's on Sabril and Felbamate but they only seem to have a marginal effect) so the VNS is basically what's keeping him alive. At the moment he usually has less than 10 seizures a day. You wouldn't know it if you met him though, he doesn't appear to be in too much discomfort.

So VNS: serious business but safe enough to stick into a five year old.

#10 In_Remission_molly mcbutter

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Posted 14 April 2009 - 06:37 PM

I've had my VNS device for two years now. I was living in my parents' basement, doing absolutely nothing except staying alive for three years. Four months after the device was turned on, I was in my own apartment and had returned to college full time. Now I am skeptical that it is still working for me. I'm still on antidepressants and still going to therapy. I've wondered what would happen if I had the device turned off, but it might not be a chance worth taking.


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