Health Update

Well we’re off to see the specialist again tomorrow so its time to put my thoughts in order before the visit. Writing things down helps me put it all in order.  It always did, even before all of this. It’s just now I don’t polish these missives to a professional standard.  They are just the rough drafts 🙂

Its been two months since Dr Andrews decided we would step up to the maximum dosage of the Deseril to see how that would affect the pain.

It took five weeks instead of four to complete the step up programme as there was a bout of gastritis that delayed progress, so I’ve been on the top level for three weeks.  We also had the long weekend (with a unannounced visit from Dad, and the overnight stay from the nephews and the visit to Floriade) which left me with severe migraines and sensitivity for two weeks. So we’ve really only been on the top dosage under usual circumstances for about a week.

The top dosage has been a slight improvement but nowhere near the extent I was hoping for.  I can tolerate a lawnmower for five minutes instead of two minutes before the migraine kicks me in the teeth.  Improvement yes, but not enough.

The worrying factors now are that I’m still losing cognitive functions.  I thoughts these were temporary side effects of the drugs but they are getting worse and new ones are developing and now I’m scared there’s more going on than just pain responses.

The three things Mel does not want to admit to:

1. Mel has stopped driving.  Oh I know how to drive fine.  I don’t remember what side of the road to drive on to.  That nugget of information is gone.  I sit in the car at the end of our little driveway and I have to work it out as a logic puzzle as to which side of the road I turn.  I’ve driven for 23 years and that information is now gone.  I just wont drive now.

2. Mel has stopped hand writing. When I’m having a bad day, I want to add butter to the shopping list, my fingers will write tyvje.  I want to write the number 5 my fingers will write a number 7.

3. Mel prefers Internet communication to phone or face-to-face. Ever since arriving in NSW and starting this drug regime, I’ve found it difficult to find my words or do mental arithmetic. It fine in the morning, but I slowly lose the ability throughout the day.  It is also tied to the migraines, the worse the migraine, the faster I lose my mental acumen.  However as the months have rolled on, this is getting worse.  Many is the time, I’ve been reduced to feeling like a three-year old and just pointing at the thing I’m after as I can’t remember the name for it.  This is particularly embarrassing when out in public.  At least if I’m typing an email or an SMS message and I get stuck, I can make a cup of tea to clear my head or even google the damn thing and find the word I’m after and its OK.  If I’m on the phone or face-to-face then I have to continue to struggle through.

So am I going insane? Do I have early onset Alzheimer’s? Do I simply have far too many side effects from the drugs I’m on?  Are these just the results of being in chronic pain for so long?  My head hurts all the time. The pain does not go away. Ever. It just fluctuates between bad and mindnumbingly horrendous. And its at a point where I can start to ignore it when it’s “just” bad.  But it’s still there. And that’s got to be affecting things.

Things.  Good all round word – things.

Anyway we’re going to present the above examples, and ask Dr Andrews what else is going on.  Dr Andrews is singularly focused on managing the pain. That has been his first priority since I walked into his office.  We can’t look any further until we manage the pain he says.  Well I’m scared. And I need to know what the hell is happening to my brain and is this permanent or do I get these faculties back?

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4 Responses to Health Update

  1. Oh, Mel, I do hate to hear how bad this is for you. Back in the late 70’s I had migraines really really bad. The doctor would give me shots that would just knock me out, but then when I woke up the pain would be gone. Then one time, it didn’t work and I had a headache for over 3 weeks and was at my wits end. At least mine did go away. I feel so bad for you because I know just how awful they can be. I do hope and pray that you and your doctor find the cure for this so that you can go back to being just normal again. Most people don’t realize just how wonderful normal can be! Hugs, Prissy

  2. Wendy111 says:

    Hi Mel, your headaches sound absolutely horrible! It is absolutely no fun having pain all the time, let alone all the other problems.
    A question – have you had a scan (CT or MRI) to check there is nothing else going on? and
    A suggestion – have you thought about trying an alternative therapy – I had acupuncture a few years ago for bad daily headaches which worked well for me.
    Thinking of you Wendy

  3. rocalisa says:

    That sounds really scary. I get a bit of that loss of cognition when the CFS brain fog rolls in, and I really hate it, but it isn’t anything like that bad.

    I can see the doctor’s point about managing the pain, but since that isn’t really working, maybe it’s time to start looking at the other issues. That “hole in my mind” feeling because you can’t find the bit of information needed is horrible. (It’s always made me think of Sam Beckett on Quantum Leap and his “swiss cheesed” memory. Have you been doing any time travelling lately?)

    Lots of hugs and I really hope something can be done to help, and soon.

  4. kay jones says:

    Oh shit and I thought I had problems. Honey I feel for you. Hopefully, as I read through my messages there will be a positive one from you but am sending loads of hugs/…….

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