Still on that boat…

Strawberry blonde in a dizzy world!

Starting AGAIN again!

March6

Well the past few months have been a total nightmare to put it mildly and I’ll be very glad to put it all behind me. Between starting so many new things and trying to come off old things my poor dizzy brain didn’t know if it was coming or going. The IV silver treatment was tough causing massive herx (die-off) reactions. Two hours after the treatment I would routinely get a chill, start to shake so much my body ached then get a temperature and a banging headache which would then clear. It was pretty scary the first time and poor Mary had to deal with a hysterical wreck on the floor – good job she’s calm in a crisis! I’d had herx reactions before but never as severe as this. Over time it became easier as I knew what was happening and that it would eventually pass. If I detoxed like a ninja I could generally nip them in the bud. Epson salt baths were a life saver.

The herx reactions also made my normal symptoms worse so all in all it was a bit of a terrible time. Having to sit on the floor to be able to make a cup of tea as I was too dizzy and ‘out of it’ to stand had become the norm. You really do take these things for granted, I mean making a cup of tea for goodness sake?!?

I returned home to England in December and stayed with my mother for a month. One of the drugs that I was on (Gabapentin – evil, evil stuff!) was likely making my symptoms worse as I was on such a high dose for a number of years. Oh the withdrawal symptoms from that. I can honestly say that has been the hardest thing I have ever had to do in my life and I have a new found respect for anyone trying to get off anything be it gabapentin, benzodiazepines, opioids hell even chocolate or coffee.

I would drop the dose down a fraction and two days later like clock work the shakes, anxiety, insomnia, nausea, migraines would kick in and then the following week my vertigo would get so extreme I could not stand. I had to repeat that cycle over and over again for months and it felt like it would never end. I got out the bath once and had no idea where I was or what I was doing – scary stuff. Thank goodness I had such an amazing support network around me. Mary and Andrew making me laugh daily, helping me to get through it all and managing my crazy dietary requirements. Poor Andrew has pretty much travelled the length and breadth of Texas (which aint exactly small!) to try and find rare and wonderful things that I could actually eat – sea kelp noodles exist, who knew?

It was so important to let them all know what I was doing, what was happening and that me crying my eyes out just wanting to die was entirely normal. My mother was amazing too and also struggled with my diet. When she was going shopping she asked me what I can’t have, I had such a long list she re phrased it to ‘well, what can you actually eat?’. On Christmas day I didn’t even get out of bed. Everything felt impossible.

That was over two months ago and I’m finally free of that awful Gabapentin woo hoo! Unfortunately the clinic I was going to closed as the doctor retired but in hindsight (isn’t that a wonderful thing?) it was too much for me, my body was just not happy at all. I pushed myself way to far in my desperation to get well again.

So, now what I hear you ask? Yes, here I am again starting over back in America. I’ve now backed off big time with all the supplements and herbal tinctures and just eating a balanced diet – I was becoming (and I still am) rather obsessed with it. As I was diagnosed with mould toxicity it’s more important that I avoid things like peanuts, mushrooms, canned tomatoes, alcohol and chocolate. Although i do have to admit to jumping on the celery juice band waggon!

I’m seeing ANOTHER doctor where we are using ten pass ozone which I’d never heard of. It’s like the ozone that a described in a previous post just much much stronger. Its very early days but I definitely feel like I’m getting some energy back. Whether that’s because I’m off so much prescription medication or the alternative medicine I guess only time will tell. Something has to work one day – I’ll never settle for a life spent in bed that’s for sure. There is no way the team behind me would allow that anyway!

My veins are all a bit buggered up from all the silver treatment, apparently that happens to some people so we are having some trouble getting a vein but where there’s a will there is a way.

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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉

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