Life, MAV family, Gabapentin and how time flies

So,… here we go…

Well its been months and months since I was last here (Oct 2011) as I left the UK to commence my trip back to New Zealand via 6 weeks in Asia. Since then life has been a whirlwind of amazing sights, sounds and smells and the persecutions of MAV attacks. I’ve felt the distance growing with all that’s been happening in my life and the lives of folks on here and I’ve finally found the time to sit down, read and re-connect.

Asia was a fantastic trip but was not without it’s pitfalls but for the most part, I made it through pretty unscathed. I finally landed back in New Zealand at the end of November after spending a week in Sydney and best of all having the absolute pleasure of meeting our guru Scott and the lovely Victoria (photos to follow). Meeting Scott was such a moment and I felt so many emotions but most of all a huge amount of love for the person that has made this site happen and given support for so many sufferers. I am blessed to have him as a friend. The 3 of us had a fun night at Jamie Oliver’s new restaurant and I was sad to say goodbye to Scott and Vic.

As some of you may remember, at my last consultation with Dr Surenthiran in the UK, he had prescribed me Gabapentin to start taking alongside the Nori (75mgs p/d). He told me to wait until I was in NZ and in a stable place before tackling the drug. So on the 3rd Jan, I popped my first pill. Well aside from making my head feel like a pressure cooker for the rest of the day, it was a pretty ok ride. However the next day I felt like a million bucks! Seriously. So for the next few days I stayed at just 1 tablet and then I had to push up to two. Again, same thing. First day not great but day after pretty dam awesome. So a few more days at 2 tablets before my final push up to 3 tablets a day (900mgs) split dose.

I cannot even quantify how amazing the Gabapentin is. It literally killed the daily sypmtoms that I was still suffering from that the Nori had never been able to tackle. The buzzing in the back and sides of my head were gone completely. My general feeling of illness and fatigue that would usually kick in around 5pm were gone and my left ear wasnt giving me half as much grief. Amaz-balls :mrgreen:

2 months down the line and the Gabapentin has held firm but I’ve had the odd blip out day where my brain decides to sh*t itself just because it can. But generally life is now 100% MAV free 6/10 days and 80% the rest of the time with the odd rock bottom slide to 10%.

Dont get me wrong, even on my 100% MAV free days, I’ve never felt ’free’ from MAV and I know that I never will. It’s likened to a hangover. There are some that you sail through but you know really they’re still there and there are those that floor you.

So given my new found freedom, I did what every new released prisoner would do, GO NUTS!! Take on as much as possible and max out on all the good feelings. I went to work on a farm for a month and had the time of my life. I had 1 MAV attack the entire time I was there and only that floored me for a few hours. I was working outside every day and it was doing me the power of good. I was on fire!

After that I came back to Christchurch (South Island) where I decided to base myself for 6 weeks as I’m due to fly home at Easter for a couple of weeks. I joined every recruitment agency in Christchurch with a hope to get some office temp work to tide me over until I left for my holiday. I finally got offered a role to take me up until Easter with the University of Canterbury.

Then the hell started. I started my post last Wednesday midweek before going full time 5 days a week this coming Monday. My first day in the office and I’m shown to my desk. MAV nightmare on steriods. Fluro lighting overload, 2 brand new super duper flat screen monitors to glare at and no window. Joy. By the end of Weds I thought I was going to drop dead and had to ask them to have the lights above me removed (due to some funny brain condition I have I told them :? ). That helped a lot. Thursday I was doing lots of meet and greets, meetings etc so wasnt really noticing any MAV issues until the last 30 mins of the day when I went back to my desk and faced the computer. Well, it made me so ill that I almost couldnt see or walk straight. I had to go to a presentation at 4pm and could hardly stand up and had to hold onto the filing cabinet! I was pretty worse for wear by Thurs night so decided to tough it out and go to the gym for 2 hours!

Friday… well, I was trying to drip-feed my brain with small periods of looking at the computer and then turning away to focus on other things. I got through the day but I new I was at my absolute limit. Friday night my brain would not calm down and I slugged 2 Valium down my neck just to be able to stay in bed without falling out!

Sat/Sun I’ve been averaging about 60%… my brain is probably still dealing with the fallout from the 3 days last week. So, as you can imagine, I’m NOT looking forward to starting a full 5 day week on Monday. But one can only try. I have further increased the Gabapentin this weekend by 1 extra tablet so am now on 1200mgs per day. I’m hoping this extra dose may help.

I guess at this point I should apologise for the world’s longest post!! SORRY!! I have a lot of catching up to do! Hopefully my next post wont be about me being carted off to the funny farm at the end of the work week.

I’ve missed being part of this forum for the past 5 months. I’m sad to see a lot more new people but at the same time relieved that they’ve found this site to help them cope. And more importantly I’ve missed so much of what has been happening in the lives of those that I have got to know and care about. There is plenty of reading for me to do.

To everyone that I know and care for deeply, and whom sent me words of love and encouragement since getting sick, to me leaving on that jet plane, I think of you often and hope that you have been continuing to improve these past months.

Peace out.

Mups x

Great to see you back on the forum Muppo! And so lovely to meet you back in October (gosh, was it that long ago??).

I’m so happy that the Gabapentin is working so well for you and it sounds like you also had an awesome time making your way back to NZ with lots of adventures along the way. I expect it will take a while for your poor brain to adjust to office work. There are so many triggers there (well, work for one!) - computers, lights, deadlines, all that stuff. Try and take it easy and don’t push yourself too hard.

Vic :slight_smile:

Mup, SO glad to hear that you hit 100% and enjoyed some time there. But it sounds like a fat kid just jumped into your pool, so the waters are a bit rough. But I think there is smooth water ahead for you, things will settle down. The GREAT news is that you found the chemical problems in your brain, so just be persistant with your medications, or try their “sister” medications. Keep us updated my friend :smiley:

Great to hear from you Muppo. I was wondering how you were doing. So how fab to hear you’re doing so well. I’ve never heard of Gabapentin, is it something new? But it’s so encouraging to hear of the results you’re getting from it. Long may they continue! I’m still amazed at what you are managing to do and find it totally uplifting that you felt the fear but did it anyway! All the best in your job…

Brenda

Great to hear your travels are going so well Muppo. It’s good to know that you’re doing so well on gabapentin - long may it continue! I think you’re amazing to cope with all this and still be able to grab life and shake it by the balls! You rock!
Take care, Tracey x

Hi Muppo,
it’s good to hear from you - what an adventure! I was recently wondering where you had been - so glad to see you’ve been giving MAV the middle finger and getting on with life regardless - I really admire you for that.
I’ve recently started seeing Dr. S too (just before Christmas). And I also have a pretty juicy Gabapentin tritration schedule that I need to get on with!
Hope things settle back down pretty soon - best wishes,
Tony.

I was wondering how you were doing since you hadn’t posted in so long. So happy to hear that youve had an awesome time traveling, and that you have been functioning at such a high level. Don’t let this get you down… I think these are the kind of things that happen to us MAV sufferers. Just continue to go about your business and I bet that these symptoms will slowly fade away. Even at my best, I never feel “normal”, but if this is how we must live, better make the best of it. Congrats on the new job, and best of luck!
Jen

— Begin quote from "jenh21"

I was wondering how you were doing since you hadn’t posted in so long. So happy to hear that youve had an awesome time traveling, and that you have been functioning at such a high level. Don’t let this get you down… I think these are the kind of things that happen to us MAV sufferers. Just continue to go about your business and I bet that these symptoms will slowly fade away. Even at my best, I never feel “normal”, but if this is how we must live, better make the best of it. Congrats on the new job, and best of luck!

Jen

Hi Jen - thanks hun, great to be back here (not in a literal way hahahha) but great to be in touch with my friends again. How have you been and what drugs are you now on? I’m praying that what you say is right and slowly my brain will be used to me working back fulltime and who knows… maybe one day moving back up the proverbial ladder!

Lots of love x

— Begin quote from "Brenda"

Great to hear from you Muppo. I was wondering how you were doing. So how fab to hear you’re doing so well. I’ve never heard of Gabapentin, is it something new? But it’s so encouraging to hear of the results you’re getting from it. Long may they continue! I’m still amazed at what you are managing to do and find it totally uplifting that you felt the fear but did it anyway! All the best in your job…

Brenda

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My lovely Brenda

Thank you for your lovely words. Reading them helps me to stay focused and carrying on bulldozing my way through. Gabapentin is the drug in Neurontin so mayby you’ve heard of that? Because I knew/could feel/hear the electricity in my brain and Gabapentin is an epilepsy drug which controls the electrical currents in your brain, I was almost certain it would add benefit to me - and it’s awesome! It is similar to Pregabalin, the drug in Lyrica which Dizzy Izzy and Fiona are on.

Hoping you’re doing well my dear!

Hugs xx

— Begin quote from "tracey c"

Great to hear your travels are going so well Muppo. It’s good to know that you’re doing so well on gabapentin - long may it continue! I think you’re amazing to cope with all this and still be able to grab life and shake it by the balls! You rock!
Take care, Tracey x

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— Begin quote from "TeeCee"

Hi Muppo,
it’s good to hear from you - what an adventure! I was recently wondering where you had been - so glad to see you’ve been giving MAV the middle finger and getting on with life regardless - I really admire you for that.
I’ve recently started seeing Dr. S too (just before Christmas). And I also have a pretty juicy Gabapentin tritration schedule that I need to get on with!
Hope things settle back down pretty soon - best wishes,
Tony.

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Thanks gang but I know I wouldnt be this far without the support from this forum. Dont get me wrong, I still want to hack my head off every day but the days when I’m 100% MAV free are like winning lotto.

Tony - get that stuff down your neck, it’s liquid gold in my opinion and glad you’re under Dr S! My next apt with Dr S is in July and will be via phone - so since I’m in NZ, that would mean in the middle of the night for me to call him!! :shock: