Bonnie posted a post for TRD (treatment resistant depression) and I was the only one that posted. I know we have more than two. Please post so that we can share our experiences and offer help!

I totally agree! Even those of us that don't have TRD would still love to hear your VNS story- good or bad. This is as important as the ones about seizures and epilespy. Hugs, Fay

You know a thought just occurred to me. Some people that have depression may not realize that they have the TRD type yet. I know I didn't when it was happening with myself. All I knew is I was getting worse, and was under a psychiatrists care.

I didn't know that I had TRD. I couldn't understand because I was taking the damned medicine, so what was wrong with me?! Nothing made sense, and I kept beating my head against a brick wall.

So, why were things getting worse, when I was taking the medicine as directed? I didn't know about TRD, or even what it was.

Sincerely,

Bonnie

Those who have the vns for depression or TRD still need to tell their vns story- be it a good one or a bad one. The VNS is implanted exactly the same as the way it is for the epilespy patients. The only difference is the depression and TRD patients don't have to use the magnet to stop a seizure (aren't you lucky?!). Other than that it's still the same. It's very important for people whose doctors- regardless of what kind of doctor- suggest the vns to know firsthand about it from those who already have it. This message board is NOT just for those who have the vns for epilsepy or only for those that are having problems. It would be so nice to have more people who have the vns for depression or trd share their stories as well as having more of those with epilespy telling theirs too. I thank God every day for this message board and the people here. It means a lot to know that I'm not alone and that Scott isn't the only one that had problems with his VNS. If he had it and it was helpin I'm pretty sure I'd still be here too. Just trying to help others that might be walking in my shoes. Maybe some people feel like they are outsiders, don't like to share their personal stories to strangers and dozens of other reasons why but i wish they knew just how important their story might help someone else dealing with the same thing.
Thank you and Labrat for being here sharing your stories along side us vns epilespy friends. We are here to help each other regardless of why you have the VNS- one of the very reasons BB started this message board to begin with. Hugs, Fay

I totally agree that all stories need to be told, regardless of the reason for the implant and regardless of the outcome of the surgery. It is important for people to see both the positive results that can be achieved and also be aware of the problems that can result. Personal testimonies are the best way to give hope to someone who is on the same path as you. We may all be different, but all of us here have been down the VNS path for one reason or another.

I have yet have any results, positive or negative, but either way I am here for the long haul. Without knowing I had people to support me through this whole procedure (and the surgery is the minor part!!!) would have been very difficult for me because my own doctor has only had a handful of patients with this, so he is rather "green" when it comes to VNS.

This is a good thread, Labrat, thank you for posting it! I hope to it encourages those with TRD to share their story. Hugs!


:im_033:

Hang in Gel, hopefully something will happen soon!

Thanks Labrat! Like I said I am in for the long haul, so time will tell.

That's the spirit!!!!! I hope it pays off for you as it did for me!

MY VNS was implanted for treatment resistant depression. It was implanted on June 20, 2007. I went years and years on medications and getting ECT and in and out of the hospital. I have a great psychiatrist and when VNS first received FDA approval for TRD I was the first patient he recommended it to. Although, it took a long time of battling the insurance company before I got the implant. We, are still having major issues with Cigna over paying for the implant.

When the VNS was first turned on I could see much improvement in the way I was feeling. However, over the last few months I have seen a major downward spiral in the way I am feeling. I still am on all medications and have not been able to reduce those any. I currently take Zonegran, Cymbalta, Xanax and Chloral Hydrate.

I hang on to the hope that it will get better. That truly is all that left is hope. There have not been unbearable side-effects to date. Most of them are gone with in a day or two of having the VNS amped up. Although, with this last adjustment the hoarseness seems to last a little a longer after it activates and I still get some residual coughing.

Lisa

Hi Lisa,

One of the biggest challenges I see with VNS is that since it is a newer treatment, doctors don't have much experience in changing dosing using the different options (parameters) available.

I've had my VNS since May 2006 for TRD. I am the first patient my doctor has worked with and he only has four other patients with VNS. Though he had initial training and went to a seminar about a year after my implant, he doesn't seem to have opportunities to discuss options with other docs.

Labrat helped me out with some info and I may have my doc get in touch with her doc.

It's also such a let down that Cyberonics, after pushing so hard for me to get this device....hasn't followed up in making sure insurance pays AND doesn't seem to be dependable in getting advice/direction on what to do as far as dosing.

Keep after your doc to make sure he/she is trying all options for dosing. Hang in there...

Anne

You sound like you need some adjustments to your VNS. What are your settings?

Hello I had my VNS implant Dec 22 2007 for TRD. I have suffered with major depression for all of my life and have been a long list of medications. For a time after the implant I got worse. However, i do not blame the VNS I blame the Cymbalta my doc had me on. I knew it was not working for me and had tried it before but he insisted that he had patients that did well on it so i was on it even tho i knew it wouldnt work and most likely made me more suicidal then any other medication i have taken. I am in the study but i am most likely going to be removed because i demanded to be taken off of cymbalta because I continued to think of suicide and was not functioning at all. I am on ensam now and i feel a lot better now. I dont think of suicide anymore strange how meds can make you feel certain ways. Anyway i am happy for the little bit of improvement. But i credit the meds there too. I do not know what setting i am at with the VNS because of being in the study so maybe a different setting would help me get even better.

Thankyou for listening

Beth

:Welcome: Beth

You know, even for those with epilepsy often take the same medications as those with depression. Depakote was horrible for me. I would sit and stare at my medication bottles and contemplate swallowing all of them at once and then after several weeks of these awful thoughts, I realized it was the medication making me think this way! I reported it to my doctor, weaned off the Depakote and the suicide idealisations left.

It's awful that a medication has the ability to make you WANT to harm yourself.

Hi Sadeyesrme and :Welcome:

Yes, it is strange how meds which are supposed to remove certain thoughts can put them right in your head. I am just glad to hear that you are doing better!

So you are not given your settings due to a VNS trial? Guess it would be no different than a double blind study on meds.

Please keep us informed on how you are doing. I hope your days get brighter and more joyful with each passing day!

Hugs,
Cindy

Hi Beth,

Welcome to the forum. I wish you well with the VNS...mine is in for trd. Although I started seeing some improvement with my suicidal thinking & anxiety within the first two months...it then seemed to take months before anything else improved at all. It's now been almost 2 years...I still have significant depression, but I rarely have any suicidal thinking.

I was glad to hear that you are a strong advocate for yourself. So many patients defer to their doctors.

Let us know how you are doiing! :)

Anne

Hello and :Thanx: for all of you spoke to me. I really try to be an advocate for my own health but the truth is alot of the time I am not. I forget appointments so much so that my councelor wont schedule me anymore and yes i have a calendar and a brain book to write things down in but the thing people dont realize is I dont remember to look at the calendar or the brain book. Memory is a huge issue for me. LOL I worry that I will end up with altzhiemers before i hit 45 btw im 40 as of the 15th : yuk : Well Believe it or not I had epilepsy as a child and took the same medication it was horrible. Luckily I grew out of it by age 5. Thankyou so much for welcoming me I really appreciate it. It be can become so hard when noone else around understands and how dibilitating this (Disease) really is. I have often said I would rather be in a wheel chair then live with depression. Because at least then people would beable to see the disability and not question it. I have applied for disability because of my inability to work so I am hoping that will go thru. But even with that some people disagree with me doing that.

TYSVM,

Beth

If your disability doesn't go through Appeal. Even get a lawyer and appeal, Sometimes it is hard to get it for depression, but eventually you will win and they will owe you back pay from the time you first filed.

Depression is hell; I lived with it for over ten years. Never got out of bed, that kind of thing. Attempted suicide numerous times, the last one I almost died with brain swelling.

I've had my VNS for over 2 1/2 years and am depression free. I never dreamed this would happen. The VNS saved my life!

Keep us posted on how you are doing; we do care!

:Welcome: Beth!

I hope you have the utmost success with your VNS. As you can read on this forum, there are success stories. I was given disability for depression, but I also had physical (brain injury), so I never was denied or had to appeal. Please keep us up to speed on how you are doing!

Dispatch :goodluck:

Dear Beth, Hello & :Welcome: ,

I have had depression over 20+ years and got disability finally after fighting. IT really pays off to have a disability law firm helping you, as they keep track of the paperwork and filing letters at the appropriate time. I was denied three times, and finally got a meeting with the administrative judge by contacting my representatives. I was awarded that year I saw the administrative law judge.

It would be a nightmare doing it on your own. It is just too complicated for anyone to do alone. The disability law firm does NOT usually get paid until you are given your money from the social insecurity Nazi's. I used the law firm, Binder & Binder.

You can get it, but you have to keep up the fight. I wouldn't worry about what other people think, you know how you are feeling from this depression; not them. It's not like I tried to keep working either, I could get NO job. I have been through getting disability, and will do anything I can to help you. YOU WILL get it, but you have to be like a dog with a bone. You have to be determined that nothing will stop you in getting it. Don't listen to Social security, because they will say always, you are not disabled. All they do is lie to you when you contact them. I know this because the stuff they told me was all a lie. This was the Office of appeals in the State of Maryland. I checked out what they told me, and nothing they told me was the truth. All they do is try is try to discourage you from pursuing getting it.

Let me know how things are going. Hang in there! :hbeat:

Sincerely,
Bonnie

Hi Beth,

Ask your therapist if her office can make a reminder call to you the day before your appointment to remind you of date and time.

All my doctors and my therapist do this as a routine part of THEIR practice.

Even if a counselor is trying to help you become more accountable...getting you there seems to be more important than you remembering to do it on your own.

Oh, well......

Keep on working at it. Anne

A bomb hit me a few days ago. I was started on EMSAM buy given a sample. I felt during the week that I was on it like it was working. Then I went to go have the prescription filled and after what my insurance paid they still wanted 185 for a one month supply. Sadly I cant pay for this. Maybe i am giving the meds more credit than it deserved but I have been in a state of panic for 3 days since. I have given up on my councelor. They dont understand I have memory problems and they used to call me but they failed to do so the last time i missed my appt but wont admit that. The study I am involved with for VNS is most likely going to boot me out of the program because the guildline says I am supposed to be on a antidepressant. I am just so upset that medicine cost that much. There is a priscription help program but I cant have health ins to be eligible. Go figure. It just seems like everything is against me getting better. I want to scream because i feel like the world is full of selfish greedy people the CEO of bristil meyers squibb being one of them for charging 500 pr month for a medication that could possibly make someons life functional again. How can they make that kind of profit off of someone else's health issues or misfortune. Shame on them

Hi Sadeyesrme,

I know the feeling about the price of medications. Eventhough I have insurance, my take-home pay is not that much. My neuro has gotten me samples at no cost simply by asking for them. That is the one thing I have learned over the years, that you have to let them know you cannot afford the meds and ask them to supply you with the meds.

So make a couple of phone calls:
1) To the doctor that prescribed the medication.
2) To the person in charge of the VNS study
3) To your pharmacist

Explain to them each that this medication seems to be working but you cannot afford your payment after insurance. They may not be able to help you directly as in supplying the medication, but they should have contact information for you on who to contact. Quite often pharmaceuticals will supply the meds at a very low cost but you have to do the necessary paperwork.

As for giving up on your counselor, please ask for an appointment to talk about this problem of memory loss and explain that you want her/his help, but you need them to help you first by calling the day prior and even sending an email the day prior to you. When a person hears that you are wanting their help (as in counseling) and are willing to work with them, but simply need an appointment reminder, they will often help out.

Another alternative is asking a friend or family member to help you with your appointments. One person I have worked with had a terrible time remembering their appointments, so they asked a friend who has helped them by annotating their calendar with the appointments and calling them both the day prior and the morning of the appointment.

Please don't give up, you will get the help you need, all you need to do is calmly explain the reason why you need this help and ask for help. It is amazing how people will go above and beyond if they feel their help is needed. This is one of the first lessons I help people with who are working to become their own advocate for better health care.

Stay in touch and keep us updated on how you are doing!

Hugs,
Cindy

Well good news Dr. Lehman from pharmacite who is doing the study gave me a month's supply of emsam samples because I couldn't afford it. On the down note my own psychiatrist told me there was nothing he could do to help me when I told him my problem with being able to afford the meds. Sad isnt it. I am not going to go back their, it seems the goal of that office is money. Where the research psychiatrist is caring and offered me help when i needed it. I dont even pay him they pay me 50 every time i go. So in essence I left with 550 if you count the cost of the meds he gave me. I love that doc. I wish there were more of them like him out there who understand that not all of us can afford 500 pr month for meds.

I wish there were more like him too. Medication cost is highway robbery!

I am so happy to hear you got your medication. Keep talking to the doctor who gave you the samples and he could possibly continue to keep you supplied.

I know what you mean about doctors/clinics who are only out for the buck. I am just glad to hear you have one doctor in your corner!!!

Hugs,
Cindy

Keep us posted on how you are doing!

Dear Cindy,

You stated you haven't felt anything yet from the VNS. Is there any changes yet? Hang in there, it just may take longer. Everyone reacts differently to the VNS.

Dear Sadeyesrme,

I'm glad to hear that doctor that really cares, gave you more medication samples. I would stick with him; I wish more shrinks could be caring and helpful to patients. So many of them were not from my experience. The samples given to doctors offices are free, so maybe you keep getting the medicine from him. COOL.

Sincerely,
Bonnie

Hi Bonnie,

No, things are still as they were. I am still at 1.0 with pulse width at 130. I am not having it increased at this point as I have an appointment with a neuro-opthomologist in July regarding the blepharospasms. So until then my neuro and I have decided to just leave the VNS as is, especially since I still have problems with hoarseness and broken voice during the 30 seconds it is stimulating.

I want you to know Bonnie that since you first started posting on the board I have noticed some very positive changes. I can see that the VNS is working for you. I know it probably does not seem to be working fast enough, however I wanted you to know I can see the difference.

Hugs,
Cindy