Crash back into MAV hell and electric brain shocks/zaps

Hi all

Firstly, to those that have emailed me asking questions, I apologise wholeheartedly for not replying, I am just too unwell right now.

So I’ve had my first big crash. Didnt actually think it was ever going to happen. Used to think ‘my brain feels so much better now so how could I possibly relapse?’ … well I have and it’s getting worse every day. :frowning:

Monday 16th July came around and I was getting ready for work. All was as usual until I started to feel very unwell. I thought this would pass and with help from Valium but nada. And so it continued. I ended up having over a week off work as could not function on any level.

Went to my GP here in NZ who is very kind and very concerned about this wretched condition. They sent me to the hospital as an acute patient to see a neurologist. Supposedly I saw one of NZ’s best ‘migraine’ neuros but all the man (and his dumb ass trainee) could say to me at the end of the 3 hours was ‘wow’. That was it. Shortly followed by ‘I dont know what to say, I have no magic answer, no suggestions, no nothing’. I asked him about upping the Gabapentin and he said yes because I’ve got room to play with. I’m now 1600mgs and no difference.

Since then I’ve changed jobs so I’m only doing 30hrs a week but when this contract ends at end Sept, I will need to reduce my hours again in my next role because I’m fast approaching that space of ‘too sick to work’ again. :cry:

So a few people on here will remember me posting about these electric brain zaps/shocks that ultimately started my condition off and have been a constant foe throughout this. Let me tell you they are nothing short of torturous. If you can imagine being plugged in at the back of your head and the dial being turned to HIGH and you getting the feckin shock of your life that not only fries your brain, spreads throughout every part of your body with lightning bolt pins and needles. It is terror on steroids.

Now I’ve read about these ‘brain zaps’ and 90% of reports say that they are attributed to SSRI withdrawal. Loads of people have reported feeling these ‘shocks, shivers, zaps’ of electricity. So how do I fit into this? The symptoms they describe MATCH what I’m going through exactly - yet - I was never on any medication or SSRI’s in order for this to have started. But of course, I would have to be different. :expressionless:

After starting the Gabapentin in Jan 2012, it improved my well-being by reducing or annihilating so many of my symptoms within a week of taking it. As you know, I refer to it as my liquid gold. Well now it seems as if the med has simply keeled over and died on me. I have plummeted back to exactly where I was before starting the Gabapentin (Neurontin) and only being on 75mgs Nori. Barely surviving day by day, being ill to varying degrees for 90% of the day and getting slam dunked every evening without fail.

I had the most God awful electric shock Monday night whilst driving home from work. Yes in the car. Never had one in the car before and never thought I would. I thought I was having a stroke and going to die. It was the WORST one to date - even more than the beginning. I pulled over and waited for the world to settle down, then had a massive panic attack, and finally made it home and straight into bed because I couldnt even stand.

And now they’re back - almost daily. Before I was getting maybe 2 - 3 per month. Now they’re guaranteed. And when I’m not being electrocuted, the buzzing at the back of my head and across the front is unrelenting. My vision is off and my ears and face hurt.

I’m trying to gather all this information up to send a letter to Dr S in the UK explaining what has recently happened to me although I know he doesnt want to deal with me whilst I’m outside of the UK, but where else do I turn? I’m in big big trouble, in my heart I know it. My body feels like jelly all the time with tingling sensations going on all over the place. I’m smashed. Even the valium is hardly helping any more. That too seems to have left me.

If anybody on here as ever suffered these electric shocks the way I have, please share all your knowledge. I dont know if my meds have just died or if MAV is back stronger than ever.

My partner David keeps reminding me that I beat this once, I can beat it again - but I’m terrified and dont share his confidence.

To all the newcomers on the board - I’m so sorry you’re here. To all my friends/family - may you stay strong every day.

Peace out,

Mupp xx

OMG Muppo!!! I hardly know what to say, other than I am soooooo sorry for you and shocked to read your post. I need to think some more and reread your post again. I have had “electric shocks” and tried to explain them to my husband, plus I have had the “buzzing” alot, mostly when I switched doses and when I withdrew from Xanax. I am going to reread and show your post to my husband and just know we are thinking of you and soooo very sympathetic . lovingly, Meredith Spinning Lady

Muppo, I really feel for you - this just sucks. :frowning:

I will toss my thoughts out here for what they’re worth…

My brother recently developed blepharospasm, which is an increased blink rate that can progress to involuntary clenching shut of one’s eyes. He has a few triggers for this (he gets occasional migraine problems as well, but that’s a relatively rare thing with him), and driving is one of them. Watching TV, being outside in bright sunshine, and working at the computer are other triggers, though these things don’t cause the blinking/clenching all the time - driving seems to be the thing that was doing it more consistently than anything else.

I learned about the FL-41 rose tint for lenses from this website. In the spring, I was in a seminar in a facility where I developed daily headaches, so I figured their fluorescent fixtures had to be doing a number on me (not all fluorescent lights do it, but apparently these were killers). That’s when I did more reading about FL-41, and lo and behold, the blepharospasm folks are funding a lot of the research because THEY are helped by these lenses too. I got my pair of FL-41 glasses, informed my brother - who was about to see a neuro-ophthalmologist, and that doc was all for it - and now he has his. His blink rate is substantially improved now, and I’m having fewer headaches (they’re not gone, but I’ll take less frequent!).

I think there may be something about optical input that causes a special kind of stress/trigger for some of us. My husband gets migraine headaches, but he has no prescription lenses, so I ordered plain FL-41 lenses for him. All 3 of us - my husband, my brother, and I - had the same experience the very first time we put our new glasses on: an instant sense of relaxation in/around our eyes that was noticeable.

Until recently, I didn’t realize light was a trigger for me, though I knew bright light bothered me once I was in the middle of a headache. But “light” by itself is probably not all there is to it - it’s probably certain kinds of light, coupled with other stuff, like maybe the stress of driving, or being in a seminar, etc. We can’t control some factors, but maybe the tint might deal with a factor you hadn’t considered.

Hang in there! I hope you start feeling much better soon.

Muppo - your news had me gobsmacked! I thought no, this can’t be right, Mups is doing so well on her nori & gabba, has a new job & is back on track for a ‘normal’ life. Why is this condition so awful - just when you think you’ve conquered the worst it all falls in on you - AGAIN!! I’m devastated for you.
I had the brain electric shocks running over my head when I was taking Nori. I was seeing an ‘holistic’ physio & she was amazed at what was happening - she could feel how strong the zaps were. Her treatment, which involved very, very gentle pressure at the base of my skull did help lessen the zaps for a while. I went to another physio who had done some ‘cranio sacral’ stuff but her method was far too strong & gave me a migraine as well as the zaps. Since changing med to Dothep the zaps have virtually disappeared.
Holistic physiotherapists do extra training for their qualification - if you can find one in Christchurch you might be able to get some help. I know Dr S was averse to treating you while you’re out of UK but surely an email asking/pleading for some help with your latest health problems would not go unanswered. My specialist is not in the same state as me (Sth Aust) but he continues to help via email. So, different state, different country does it make any difference?
It’s hard to stay positive when things go ‘belly up’ after your long struggle to get through the worst. David is your angel at the moment so lean on him and concentrate on just trusting that someone WILL help you get better.
All our good vibes are winging their way to NZ.
Barb

Muppo,

What to say, other than THIS IS SO COMPLETELY FUCKED, YOU’RE AT THE TOP OF FUCK MOUNTAIN CAUGHT IN A SHIT STORM OF FUCKING AWFUL UNABLE TO GET DOWN.

Now that I’ve got that out of the way let me say that I too have been on that mountain and more than once. It’s the mountain where you say “I think I will die on this mountain, in fact I’m dying right now and there’s no way off and even if there were I feel so unspeakably awful I would probably rather die than spend another minute on Fuck Mountain.” But brothers and sisters I CAME DOWN FROM THAT MOUNTAIN AND SO CAN YOU!

As to your specific question - I have had brain zaps, but nowhere near as bad as yours and definitely not my worst symptom. The closet comparison is the sensation that my entire body is electrified, plugged in at the torso but at mid range voltage and on all the time rather than individual freak zaps.

Where to next for you?

My advice is to first of all not panic. I don’t think any illness responds well to panic but for migraine it’s like kryptonite.

Second is to keep reminding yourself that you have got better before and you WILL get better again. Your brain has responded exceptionally well to meds in the past and there are SO many to choose from I’m confident you’ll hit another good one.

Third - you don’t need Dr S. Your GP in NZ can prescribe pretty much anything you want to try. One step at a time.

Fourth - don’t worry about work. If you have to stay home for a while and get the dole, so be it. You’ll work again.

Five - we are here for you, hang in there.

Vic

Oh Muppo, I am just so very sorry to hear this. I really have no idea what to say that may be helpful, I feel at a loss. I’m sure you must have already considered if there was anything,anything at all, any change or extra stress that might have precipitated your crash. But we all know that sometimes one hits us clean out of the blue and leaves us stranded without any clues as to how we got there or how we get out.

David and Victoria are right though - look back where you’ve come from and take heart. You have such courage and determination Muppo that you’ll do it again, even though you feel it’s worse than ever this time. At times we feel so overwhelmed and so ill we really feel we can’t make it but as ‘they’ say, we’re stronger than we think we are and against all the odds we do. And so will you Muppo.

Big hugs and lots of love, we’re all rooting for you, sending good vibes to you to have the strength to get through this and out the other side.

Brenda

Oh Muppo…I was just thinking of you the other day… And although I don “know” you… I feel like we are MAV friends… First of all… I am so sorry!!! I know the dreaded panic, bloody hell feeling you have right now… You feel like you would cut off your right arm for help…

But… As others have said, relax, take a breath. This too shall pass… I know where you are… I have been there… Going along great… Feeling "almost normal, like you have the magic pill, the golden elixir and then BAM… Back to square one

But, that’s ok… You can get through this… Let your body rest… Take your meds… Reevaluate… Use benzos if you have them to help you relax (with drs ok of course) it WILL GET BETTER!!!

Let me say it again… IT wILL GET BETTER dear Muppo… Just let your body and brain heal from this storm that it is experiencing and take it easy… Most of all…try not to panic… Let your boyfriend and friends help you relax and heal… If you have a dr that you trus, see him or her and talk it out… Most of all… Don’t ever give up hope… We may all experience MAV in different ways, but we all understand how hard it is to have a crash

You are in my thoughts and prayers dear one,
Dee

Oh Muppo! No! I am so sorry that you have to go through this again. When I read your post, I just cried for you because I know what it’s like - to be in that place when you crash after doing well for a really long time. It’s terrifying. When I was posting on here while going through hell with MAV, you were one of the first to encourage me to stay strong. Well, now I’m here for you.

I also have brain zaps. I do think they are MAV related, but heaven knows how.

Anything going on with your hormones that may have set this monster loose again? The only reason I ask, is that the crash I am dealing with was set off by a combination of stress and hormone imbalances. My meds failed me too.

Don’t give up on the valium. I’ve had times when my symptoms were too strong and it had no effect. You could try taking a larger dose (my Dr. says that’s OK) or maybe try another benzo, I’ve recently tried klozanapam (sp?) and it’s stronger for me and works better on my bad days. I’ve found that if I take Valium when I notice my symptoms ramping up, it’s more effective. Not that this helps much when you feel terrible all the time. I understand that too.

As hard as it is - and I know this first hand as many of us do - the thing you have to do it try not to panic. It will only keep your symptoms high for longer. Just keep repeating to yourself, I got better once, I can do it again. It just completely sucks that you have to. I HATE MAV!

If I could jump through this computer and give you a hug, I would. We’re here - vent, cry with us and then pick your chin up and keep fighting. You’re in my prayers.

Cherity

Muppo, I’m so glad that when it hit whilst driving you were able to pull over, and then to get yourself safely home. Fears around getting walloped while driving are a big one for me–and my sweetheart.

When you say your symptoms match those associated with SSRI withdrawal, I wonder whether an SSRI might help. Not speaking out of knowledge or experience here, just speculating.

Like the rest of the gang, I’m rooting for you big time. I mean, hell, partnered with a David. . . .

Muppo,

I’m with David; since the ‘zaps’ are part of SSRI withdrawal for some patients, perhaps the irony would be in that one would help you out?

Sounds god awful to me, hope you get better soon!

Kathleen

Muppo, I must say that as I’ve thought about you today, just like David and Kathleen I’ve been wondering about the SSRI connection. Have you explored that area at all? There surely has to be a clue there somewhere.

Brenda

Mupps – will chat tonight. Hang in there champ. S

— Begin quote from "Victoria"

Muppo,
What to say, other than THIS IS SO COMPLETELY FUCKED, YOU’RE AT THE TOP OF FUCK MOUNTAIN CAUGHT IN A SHIT STORM OF FUCKING AWFUL UNABLE TO GET DOWN.

— End quote

I don’t think I can say it any better than Vic. SO sorry to hear this news when things were going really well. This condition really bites the proverbial big one. Hang in there. You beat it once, and you can do it again

Muppo, so desperately sorry for you. Hang in there - you can get through this - you’ve done it before and can kick its ass again! This is an absolute bitch for you and I’m sorry I don’t have any solutions to offer, but I hope you know that everyone on here will be rooting for you.
Take care. Tracey x

Muppo my heart goes out to you. So sorry to hear you had a relapse. Hang in there. You’ll beat this like you have in the past. My prayers go out to you for a speedy recovery. hugs to you.

Muppo,
I am so very sorry to hear about what is going on with you. It’s horrible feeling out of control and not knowing if you will feel worse or hopefully better. I am in a similar place as you. I was actually thinking that I had finally had a hold on things and maybe could consider cutting back on some medication doses. Not the case by any means… it sucks!
I want to say don’t panic…(as I too feel the panic) and yes we have beat this and will beat this again and again and again… sounds like this is par for course (unfortunately).
Maybe you have a bug or something that is causing you to feel this way and you will start to straighten out. I oftentimes forget that we are allowed to be sick and that maybe this is how we show that we have come down with something. Give it some time… and don’t give up.
No one outside of MAV will ever be able to understand what we all go through. Keep your head up and keep fighting.
My thoughts go out to you.
Jen

Dear Muppo,

My heart sank when I read your post, and I can only echo what others have said… I really feel for you. You have a whole load of love for you in this forum, all thinking of you, all wishing you the very best.

When I first came onto this forum, you were one of the first to respond to me, and you told me “You will get better. But i wont lie, it might not be next week, next month… But you will.” … It really helped. You know you too will get better from this horrid episode. I just hope it’s not too much of a wait for you.

You beat this once, you will do it again. You also know what to expect 2nd time round and are much better prepared. Plus although your brain is irritated, I like to think its had a little bit of a head start on healing as it has done it once over already.

Please keep us updated

MM xx

Just reiterating what I wrote in my email: I am so very sorry to hear about this, but I KNOW you will get well again. You got well once, and will again. I also wanted to add that I do experience “brain zaps.” based on your description, mine are different, but I do call them, “zaps.” it’s unbelievable the symptoms that can arise from “MAV” Please keep us posted!!

Dear Muppo,

I hope you will get better again soon. I had a period in june were I thought I went all back in again. But after 3-4 weeks I went back to my new normal… I was SO scared!
I get zaps to.

Best from Line

Dear Muppo,

My heart just dropped to the floor when I read your post. I have not communicated with you much on here but for some reasons your story was one of the first few I read about as it seemed to be one of the worst and I remember reading that you had to have someone sleep next to you or near you for many nights because the room would spin so hard you were scared of falling out. Than I read how well you were doing and I was so hopeful because I too did not suffer from headaches so I thought there was no way I could have anything that had to do with migraines.

Anyway, I just am so sorry about your relapse and I don’t have much to offer other than my support and prayers. And what I’ve seen from others on this site that have had relapses is they only last a few weeks. You beat the living crap out of this once and you’ll do it again. I am sure of that. I hope by now you have seen a specialist and have some answers to report back. We are all pulling for you.

Mavprincess