Update: Life and Gabapentin

Specific Illnesses & Conditions VM/MAV
1

Hi all

Firstly, hope all my friends on here are doing a whole heap better and to all the newbies, sorry you’re here, but since you are - you’re in good hands.

It has been about 8 months since I posted last, my how time flies. I am still living in New Zealand and loving it here but not loving the winter we’re now heading into… God I miss good central heating that you get in Britain!

I went back to the UK for 6 weeks last December and saw Dr S on the 18th Dec. He said that whilst I have made a vast improvement, it still wasnt enough. He said given that I am still reacting to environmental factors (i.e. going back to work full time), that there is more work to be done. He had me increase my Gabapentin dose from the 1600mgs that I was taking, to 2400mgs that I am now on. I tolerate Gabapentin incredibly well and truly believe I could eat 10000mgs and my brain would love it :smiley:

There has been some extra improvement, but not a ton on the higher dose. Dr S had hoped that I would get another ‘hit’ from the Gabapentin like I did the first time, by significantly increasing the dosage. Hasnt quite worked out like that. I guess my benchmark is my brain zaps, and whether they will ever be eliminated or not, and they have not been. They are not as bad or as frequent, but nevertheless they are still there and I hate them. They are painful and just a horrible experience.

Since arriving back in NZ at the beginning of Jan, I have not been able to find a job. I am still unable to work fulltime and can only manage 3 days a week. There is literally no part-time work so David is trying to support the both of us (whilst still going through the world’s most ugly divorce and pay for his ex-wife and kids), it is very tough. If I could work full-time, I could get a job easily. :?

So whilst I can report that I am 95% stable, my reality is not such that I can report if this would be true for all situations. So, if (or should I say WHEN) I eventually find a job, I will be able to better report on how I handle things. However I would say that the amount of stress is my life is at an all time high due to David’s situation with his ex-wife and his 3 children. I have gotten sick when things have reached breaking point and I am worried that I could have a major relapse like I did last July given the stress is a daily struggle.

My parents have intervened recently (they’re in the UK) and have spoken at length to David about this situation and how he absolutely needs to get it under control (deadline is today for legal responses to be received by the ex-wife otherwise it’s Court) and that they will not stand by anymore and allow all of this horrendousness to continue and the profound effect it is having on me. Our life is hell because of this woman but I have told David I will leave him if needs be in order to protect my health as I dont know how much more I can take. I feel I’m toying with MAV with all this stress and we all know that stress that is a MAV trigger of epic proportions.

Anyway, we all have our battles that we are trying to fight each day.

I am also hoping to once again be more active on the forum and help support anyone who has been newly diagnosed. But one thing you cannot do, is give up hope or lose faith.

Peace out x o x 0 Muppo x o x o

2

Muppo!!
Welcome back - have missed your ‘pithy’ posts & imagined you were having such a great time in NZ you didn’t need to hop onto the forum any more! Anyway good to hear you got to see Dr S again - pity the Gaba hasn’t stopped the zaps completely for you. Sad to hear that you’re having a ‘not such a great time’ with all the other relationship junk. Fingers crossed that will get sorted without nasty Court battles & a part time job comes up for you.
I remember how your brave travel story gave me hope at the beginning when things were so bad for me & now here I am nearly two & a half years later just about getting my life back. Moving house to a totally new environment by the beach so I don’t have to drive on winding roads all the time (visual vertigo/motion sickness) & not living in a bushfire risk environment has helped lower my stress levels & Topamax is helping with balance/visual vertigo issues.
Reducing those stress levels is vital so hope you can achieve that Muppo.
Good luck!
Barb

3

I can’t write much at the moment but just wanted to say thank you for the update Muppo, I have been wondering how you’ve been getting on. I’m so sorry to hear there are still some nasty hurdles and do hope you can get past them. Hang in there!

Xx

4

Hello Muppo! How great to hear from you. Been wondering how you were doing. 95% stable is not bad at all!! But not being able to work full time is a real pain. And still dealing with David’s ex… I admire your strength of character and no-nonsense approach to things. Your tenacity and determination to get your health back at whatever cost is awesome and a great example to those of us who are less steely when it comes to making choices that are good for our well being. Your story highlights once more just how stress can derail us and just how vital it is to address it.

Thanks for sharing and updating Muppo. Hope things take a turn for the better and you’re freed up to achieve 100% wellness. Stay strong and positive and you’ll get there!

Brenda x

5

Hi Muppo

Thanks for your update. It’s good to know you are doing well, even though there’s room for improvement which is hopefully achievable! I hope the stresses in your life get resolved soon so that you can focus on recovery.

I too am under Dr S and on Nori. I am also about to add Gabapentin and I just wanted to ask if you found that it helped you straight away or did you have to get past any unwanted side effects first? People have said that Gaba makes them feel quite drunk and swimmy headed especially when starting out and I wondered if this was the case for you too? x

6

Hi Muppo,

Are you still on nortriptyline? Can you increase that at all? That’s great you can tolerate gabapentin- it made me so sleepy! Are you about 95% on the higher dose now? What % were you on 1600 mg?

Do you have any trouble with walking/balance and does it help with this?

I’m sorry to hear about the brain zaps- I have had those when coming off antidepressants- they are truly nasty- I hope you can get rid of those soon :frowning:

7

Hi, I have been on Gap for about 3 months at 2700 mg. It was not doing much more so my doctor added Nortrithylne and so far soooo good. even at the very small dosage i see an improvement. I would see if you could combine them. I am having really good luck with this combo so far. the Gap did help me out but didnt go further. it helped out with fullness in my head, and dizziness and this new one seems to kick out the headaches and face pain.

8

Hi Muppo you probably don’t remember me but we messaged each over a couple of times way back. I just wondered how long did your relapse last and was you on Gabapentin at the time or was that why he put you on it I’ve been doing great on nortryptoline and pregabolin for the past 22 months still had the flashing but that never really bothered me but in the past couple of weeks my symtoms seem to be creeping back to say I’m terrified is an understatement your so brave moving to another country with this crap I’ve not even been to Tenerife (that’s where all my family live) since this but I felt so great I booked to go in August now I don’t know I hope everything gets sorted out your end cheers xx
Shenay

9

Hi Muppo,

Sorry to hear of such struggles. I’ve been on a bit of a rollercoaster, but not like you have.

I am glad your parents have stepped in. Sometimes, we need someone to cross that barrier & poke their noses in to tell someone what’s what for us. Esp when we are sick.

Hope it all works out well, for all of you.

Nice to see you posting! Take care,

Kathleen

10

— Begin quote from “Jem”

Hi Muppo

Thanks for your update. It’s good to know you are doing well, even though there’s room for improvement which is hopefully achievable! I hope the stresses in your life get resolved soon so that you can focus on recovery.

I too am under Dr S and on Nori. I am also about to add Gabapentin and I just wanted to ask if you found that it helped you straight away or did you have to get past any unwanted side effects first? People have said that Gaba makes them feel quite drunk and swimmy headed especially when starting out and I wondered if this was the case for you too? x

— End quote

Hi Jem

Lovely to hear from you. Gabapentin helped me STRAIGHT AWAY! I mean, it was a miracle drug for me. Within a week there was a huge improvement and zero side effects for me. I love the stuff and could eat it like Smarties :smiley: DO NOT BE SCARED, we all must get over our fear of ‘possible side effects’ and just get it down our throats. No time to waste! Please let me/us know how you get on x

— Begin quote from “sarahd”

Hi Muppo,

Are you still on nortriptyline? Can you increase that at all? That’s great you can tolerate gabapentin- it made me so sleepy! Are you about 95% on the higher dose now? What % were you on 1600 mg?

Do you have any trouble with walking/balance and does it help with this?

I’m sorry to hear about the brain zaps- I have had those when coming off antidepressants- they are truly nasty- I hope you can get rid of those soon :frowning:

— End quote

Hi Sarah

Yes am still on Nori 75mgs. I tried going up but it was right at the time when I had my relapse last July so doc told me to stay at 75mgs. I dont believe that going hi on the Nori is going to give me anything more than it has done already. Just my take on it. I was about 90-95% at 1600mgs which is, like I say, I think I tolerate the drug TOO WELL and that doubling the dose hasnt really given me too much more that what it had initially. I dont have trouble anymore with walking/balance, yes the GabaP helped with this too.

The brain zaps kill me. The weird thing is that I seem to be the only person suffering with these when I wasnt ‘coming off’ of anything!! It’s so random. It’s like my brain thinks there is suddenly something missing and is cooking my brain with these zaps. I’d love to labotomise myself and have a look at what is going on! :lol:

Kathleen/Victora et all - thanks for your lovely messages. I certainly need the support right now what with our nightmare situation and am also glad I got my parents involved. It has amazed me how one psycho derranged woman is able to destroy the lives of so many… she would almost be impressive if she wasnt such a looney-tunes! :lol:

11

muppo how long have u been on both drugs? do you still have bad days and are those bad days as “bad” as they were before you were on meds?

I hear you about the nori- I don’t think I got any extra benefit above 75 mg either.

I mean besides your stress it sounds like you are doing pretty well with the mav? do you feel like your meds are working as well now as they did at the beginning?

I’m really sorry to hear about the stress you are under- that is awful- I hope that things even out soon for you!