Still on that boat…

Strawberry blonde in a dizzy world!

Serious post holiday blues!

October31

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Well you have probably realised things haven’t been exactly great from my lack of blog entries. I had an absolutely brilliant yoga holiday in Sardinia. The yoga was fantastic on a sun deck down by the sea with wonderful teachers. The food (and wine!) was great I’ve never eaten so much in all my life (clearly because I did so much exercise I really needed it!) . More importantly the company was exceptional I haven’t laughed so much in far too long. I managed my symptoms really well and felt like my old self again.

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I really thought I had this awful illness sussed if I did small activities with lots of rest. I even considered that, maybe, what I needed was just to have more fun as, lets face it, I’ve not had a lot of that of late. Unfortunately I had that all very wrong as I completely crashed and burned on my return – it has been heart-breaking. I have hardly been out of bed in weeks I have been so ill. I have seen a new Neurologist who seemed pretty confident that he could help given time (yes more of that!). He has changed my drugs and to be honest the last 5 weeks have been horrendous. Coming off  one of my drugs has been like I’ve had the  ‘Worst Hangover Ever’ on top of my usual fun and games. Sadly, I’ve not had the pleasure of drinking three bottles of red per night – perhaps that should be my next plan of action!

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So here’s hoping that my new Neurologist’s plan works. He actually uses Botox with quite good success in some patients so I’m going to give it a go. I’m really hoping it will have a positive effect on my symptoms. I can’t get too excited as I’ve been disappointed too many times with failed treatment plans.  On the positive side a bit of Botox makes me wonder if I will start getting ID’d again!

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My next appointment (when I have the Botox) is not for a couple of months so it gives me a chance to get over my bad patch and start the newly prescribed drugs (joy!).  In the interim I’ll just have to stick to my friend Karl’s suggested therapy of ‘One Person Helps You Stand On Your Head Whilst The Other Spanks You’.  You  never know it could catch on! 😉

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6 Comments to

“Serious post holiday blues!”

  1. Avatar October 31st, 2013 at 3:51 pm Snowy Says:

    Glad you had a great time in Sardinia – so sorry it’s been pants ever since! People would pay good money to be the woman in white in the last photo…!


  2. Avatar November 1st, 2013 at 9:51 am Jemma Says:

    Hi Sues

    Glad you had a nice holiday but sorry it was downhill afterwards! I read that this can happen with migraine. Like a post letdown phase. I just wondered who your new neurologist is and what your new meds are? Feel free to email me at the above address if you would prefer xxx


  3. Avatar November 1st, 2013 at 6:33 pm Susan Cartwright Says:

    Hiya Jemma how are things with you?

    I’m now seeing Dr Silver. I know it’s best not to chop and change doctors but I wasn’t really getting anywhere and it’s been such a long time. I’ve now started bisoprolol and reduced my dose of pregabalin which has been tough so let’s hope it’s worth it!

    You take care,

    Sues xx


  4. Avatar November 2nd, 2013 at 9:16 am Jemma Says:

    Hi Sues

    I have had a rough few months, tried and gave up Gabapentin then Topamax. Both make me so tired I feel like I am better off just sticking to Nortriptyline. I speak to Dr S in a couple of weeks so will see what he thinks. I saw Dr Silver last year but then I went to Dr S for a second opinion and am now under him on the NHS. I have never heard of bisoprolol before, is it a beta blocker? Have you tried most of the standard migraine meds already?

    xxx


  5. Avatar November 3rd, 2013 at 7:01 pm Jemma Says:

    Hey Sues

    I did post a reply before but it seemed to disappear. I did see Dr Silver but then saw Dr S for a second opinion and am now under him on the NHS. I have never heard of bisoprolol – is it a beta blocker?

    How many meds have you tried so far?

    Jemma x


  6. Avatar November 4th, 2013 at 4:49 pm Susan Cartwright Says:

    Hiya Jemma I think that was probably my fault – honestly I swear I’m turning into my mother technology wise! I’ll email you to save boring everyone with my very long list of meds 😉


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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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