Vagus Nerve Stimulator Trial (& Review)

Hey All,

Hope you are well.

Recently, I got to try a new type of nerve stimulation called the 'Vagus Nerve Stimulator', by a company called GammaCore which is actually from New Jersey, America (where else would it be eh?). If you have been reading my blogs for a while or seen my videos, you'll know I have a Gastric Pacemaker already. It helps with nausea to a degree but not for pain at all which we understood would be the case. From having it off, we know I most certainly benefit from having it on. My specialist decided I should try a new type of non invasive treatment. It has no side affects, is painless and doesn't involve popping more pills.

Vagus nerve stimulation sends electrical signals along a nerve, called the vagus nerve, parts of which run through the neck to the brain. For many years, vagus nerve stimulation has been used to treat various disorders, such as epilepsy and depression, in thousands of patients and is now branching out and being used for other conditions.

It is a relitively small device that you place on your neck over a conductive gel. You position so that it is on your Vagus nerve, which I got shown how to find by a very nice gentleman from the company over a Skype session along with how to use the

device itself. Did you know that the Vagus Nerve is only 3mm wide? It can be a little tricky finding the exact positioning which I think may hinder the way it works a little as you don't end up getting the full dosage. You know when you have hit the right spot as your lip drops to the side a little and looks a bit like if you have a stroke but doesn't hurt. It just feels like a tingle. The device itself has a self timer and each 'dosage' is 90 seconds, which you have to do on each side of your neck. You are also able to control the stimulation level with the two blue buttons on the device. I would usually get to about level 30 and that would be strong enough for me. So, the maximum I got to was 6 minutes on each side at around level 30 or so.

This is the device and
conductive gel you are provided

You pop a little of the gel on each of the sides before placing
it on your neck

The advantages to this treatment are:

• Non-Invasive Neurostimulation Technology
• Non-Pharmaceutical
• Minimal Side Effects
• Control over your treatment

• Direct to the nerve itself

The disadvantages to this treatment are:

• Hard to find the nerve in the 90 seconds as well as receiving the treatment
• Needs to be repeated throughout the day

• Expensive as the device only lasts a month at a time

I was fortunate enough that my specialist managed to get me a free months trial of this device. The company are trying to branch out in what the device can help with, so it meant that it was a win win for both of us.

During the first 4/5 days it seemed to show some positive results and looked to be hopeful. The pain wasn't as bad or didn't start straight away so I had time to move somewhere more comfortable than the kitchen chair. I have spent hours sitting on the same kitchen chair after eating because the pain is that bad. It give you a very numb bum that's for sure.

The lip drops when you hit the spot...SEXY!

Unfortunately, I found that even when we were increasing the amount of times I was repeating it during the day, the symptoms just seemed to come backwards to where they were. I was struggling to eat because of pain and even fluids were becoming an issue. See, in theory, the idea of stimulating the nerve directly is a fantastic idea that should have great outcomes. I do think the fact that you don't know if you hit the right spot before starting the timed treatment hinders it. Particularly at the start of it all. If you turn it on and then have to move it around slightly or at a slightly different angle until you are in the exact spot, you don't receive the full treatment and therefore how are you able to get the full benefit?

Also, another thing I don't understand with using the device for Gastroparesis, is that you're only getting the treatment 2-3 times a day (give or take), What about the rest of the day when there is no stimulation happening? How is the stomach going to digest the food without any aid? It isn't like the pacemaker device that is working 24 hours a day.Don't get me wrong, I was more than happy and hopeful in trying it, but I also had my doubts. It was like I had woken up in heaven the first few days when my symptoms were less and more under control. I just don't understand what is there to help in between each time of doing it.

Overall, I really do think this treatment has the potential as it is direct to the source of the problem. However, unfortunately, for me, it didn't work aside from the initial 'hit' from the direct stimulation. I think there are things and way they need and could improve how it works so that you can get the full benefit and throughout the day. It has only been trialed in a handful of Gastroparesis patients and from what I understand, they've all had various responses to it. I do know that my body has a tendancy to react well to things initally and then stop working after a week or two. That could be the reasoning behind the device not working well enough for me, who knows!

I really hope that they make some adjustments and I can try it again in the future. Maybe with better results.

I am very grateful I got to try the device and a huge thank you to GammaCare (not that they are reading this) for letting me trial it. A big thank you to my specialist Professor Epstein (again not that he is reading this) for setting it all up for me.

Well, that is all for this post today.

Question:

Have you tried this device if you are a fellow Gastroparesis sufferer? Or what do you think about the device if you are a non-sufferer.

Any more questions that I didn't cover within this post? Let me know in the comments!!

Stay Strong

<3

Reality Hits Home

Hey Hey Hey

How you doin'?

As per usual, I haven't posted in a while. I'm sorry I suck at this. I feel like the last few weeks have been such a blur full of crazy things. 
I debated posting this for quite a while as I wrote this when my emotions were exceedingly high and the writing got very real and I wasn't sure if it was too much.

I had two weeks off of work and it was nice to have a break from somewhere that you are 24/7. Sometimes it's just a must. I have however got a Kidney Infection (waiting for bloods to confirm it but have every single symptom of it and am being treated for one. JOYS. Loving life :/

My trial of the thingumabob finished a couple of weeks ago now and am working on writing a full post about it. But, cut a long story short, the pacemaker has been turned back on!! I've got a couple of week trial period with it on full blast and if no better.... going back to an NJ Tube temporarily may be the answer until a plan is put in place. Unfortunately, there doesn't seem to be much of a plan unless I am willing to keep trailing drug after drug. I keep getting told that 'it only takes one to work'' but how many am I supposed to try and suffer from in the mean time. I know people around me are only trying to help and that the medics have got to the point where they can only give me different types of medicine. I just don't have it in me to continually have bad reactions to medications one after the other and end up worse. With all the things they can do in medicine these days, they have no idea how or what to do now so I can do a simple task that millions of people do every single day. EAT.
I take a cocktail of medications every morning and evening just to try and live a some what 'normal' day. Do I? HA HA HA ... far from it.

I feel like I am going to just explode at every moment. The smallest things just make me go crazy. The last two pain specialist appointments have not gone well. One ended with a full on panic attack that they were almost going to have to give medicine to calm me down and the last ended with me locking myself in the toilet. Although I have known what my health condition involves and have hit many lows realising what life is going to be like, the reality of it has really hit me recently with all the failures of medicines and treatments not working. The fact that other than drug after drug, my doctors don't seem to have any clue to what to do. Don't get me wrong, I absolutely love my pain specialist (although he probably hates me after my last appointment) and I know he is trying his absolute best and trying his best to support me, I have just got to the point where I am so ridiculously fed up. I am literally ruining everyones life and making everything hard for everyone around me.

All I want to do is hide away, curl up and cry. Not loving life right now to be honest. Not at all!




Of course, there is a bow on there.
Wouldn't be Sophie's otherwise :)

With Christmas around the corner, my feelings are just all over the place. It's another day that is about spending time with your family and... having a big Christmas dinner. Yet another day that food is majorly involved, meaning even more of the TV adverts are food related. It is crazy that with everything that could be advertised in the world, food adverts are 99% of the ones shown over and over and over! It's doing my flipping head in. I don't watch much TV as it is because of that, but it is even worse at the moment. I'm stressed about Christmas Day because I don't want to be at my family's house with everyone watching them eat, but I also don't want to be left on my own knowing everyone is together and I am once again alone and missing out on being with all the family. It's the same catch 22 as every single occasion that happens through the year. On the flip side, I have decorated my room which now looks like santa's grotto. I originally wanted to put some fairy lights around my window because every time I see them, the seem to relax me a bit. It somehow then turned into wanting a little Christmas tree for my room that I can put more lights and glittery things on and presents once I start wrapping them up, which then also included getting even more lights for across my bed. I love it though, so I don't care! :)

I don't think I have much else to say to be honest. My mind feels like a mushy mess right now.
I also don't want to bore you any further.

So until the next time,

Stay Strong
<3