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Something that probably doesn’t need to be said, but well hey this is me:

I’m probably going to go a little loopy, a little flaky and probably even more unreliable and/or cranky in the next few weeks while I wean off some migraine meds and start on some others. Please, please PLEASE call me out if I’m being rude, forgetful, creepy or sound in any way worrying to you. I wont know as I’m inside my head looking out. You lot are outside looking in, so I need you  🙂 🙂 🙂

So seen new specialist. Diagnosis upgraded from Chronic Daily Headache to New Persistent Daily Headache. Have new drugs to try.

Chronic Daily Headaches is usually applied when the person has a history of headaches or migraines that become more and more frequent until they are daily. Treatment is usually drugs that break the migraine cycle.

New Persistent Daily Headache is when a NEW headache comes out of the blue and just doesn’t go away – it is persistent and daily. It can have migraine symptoms or it can present as only headache symptoms. NPDH is often resistant to the drug therapies used in CDH. NPDH is a very new category and there is very little written specifically about it.

I saw the new neurologist yesterday.  I found him  to be kind, quite helpful and very down-to-earth.  Everything my previous neurologists weren’t!

Unfortunately after a couple of hours of intensive examination of my medical history, my family history, my work history, what happened when the migraine started, all the drug and other trials I have been on since, looking at all the MRIs and CT scans of the blob in the head and a thorough physical examination of neurological responses, he came to the same conclusion as the other neurologists.

I have all the classic symptoms of Chronic Daily Headaches stemming from a Migraine (some fancy name meaning out-of-the-blue).

He feels the cyst on my pituitary gland, while quite a large size for what it is, is not the cause of the migraine.  He says that the only reason it would be is if it had swollen suddenly as if a hemorrhage.  We can tell that didn’t happen as a hemorrhage would have slowly leaked away, and the MRI one year after showed it to be the same size.  He has ordered another one this year, just to keep an eye on it.

CDH typically occurs through medicine overuse.  That is, the sufferer has a history of bad headaches or migraines and though the years these migraines become more and more frequent. The sufferer deals with this by taking more and stronger drugs until eventually this cycle tailspins into CDH.  The way to deal with this is via a few well known treatments to break the cycle.

I’m one of the few of the other type of CDH.  Where my migraines had not become more frequent over time and I did not treat them with drugs.  With my allergy to codeine, most of the time when a migraine hit, I slept them off in a cold dark room.  Neurologists do not know why this sort of migraine suddenly flips into CDH.  As they do not know why, they cannot adequately treat it.  There are a number of treatments that do work for a percentage of us, but I have already tried all of the available treatments without success.

With current known medical theory, my migraine is here to stay for the rest of my life.

He said the main course of progress now that he recommend is a Chronic Pain Management program. He said there is one at the hospital he is attached to that has a number of psychiatrists, psychologists and remedial physiotherapists attached, but I don’t need that as I am already seeing one of the best psychs in Melbourne and she is already leading me through CPM via Mindfulness and Buddhist acceptance techniques.

He was very straight-forward when delivering all of this news, but he was also extremely kind.  He was aware this was not the news I wanted to hear even if I didn’t say as much.

He also informed me that it appeared I wasn’t quite ready to fully embrace the acceptance part of my therapy yet. That I was still looking to clutch at straws any straws.  There was one neurologist in Melbourne who studied in the US and she has a different take on headaches. He highly doubts she can me, as her research is not in my type of headache, but he can give me a reference to her and I can see her as a last resort.  So I can satisfy my mind, that I have indeed run down all possible medical options.  He was at pains to point out that was more for my psychological benefit to help towards my acceptance path than because he felt it would help me medically.  Rather he felt I could help the specialist by furnishing her more data in this area that she is not skilled in.

He is sending out a reference for her in the mail and I am to decide whether or not to use it.    He also said that if I chose not to use it, or after I finish with her, come back to see him and we will start a regime of reducing the number and dosage of drugs I am on. At this point all they are doing is taking the edge off the migraine and so allowing me to actually leave the house for appointments etc.  They are not stopping the pain.  So he wants to reduce the dosages and types of drugs in the cocktail until we maintain that edge but hopefully clear up some of the side effects such as brain fog.

Given my history of hating to take drugs of any kind for most of my life, I am quite susceptible to side effects, so reducing these is the one thing he can do to help.

As most of you know I have been very very quiet around here and on my groups for about four months now.  I hit depression big time on my birthday and have been seeing a psychologist about it on a regular basis since.  I’ve also been finally coming to grips with some long-term and new shorter term health issues, living in a transient state etc etc.

I finally decided that getting better, or even dealing with all of this is for me a “Snakes & Ladders” game.  Most of the time I’m just plodding along taking things day by day and overall I am making some psychological progress in Melbourne.  Some days go great and I start prematurely perusing the job listings and others go horribly and I slither all the way back to the starting point of crying my eyes out for hours and thinking there is no way out. As you do.

This is a learning curve. I finally (finally! I hear some of you scream) figured out that it’s not helpful to shut myself off from my support network while I’m going through this process. Yes, slap me across the back of the head, I deserve it 🙂

Actually don’t, even thinking about that makes my head thump more. {sigh}  Anyway … here’s to chatting with you all again.

I’ll still be climbing ladders and slithering down snakes for a while but that’s just the way it is.

My birthday day this year was pretty horrible.  As was last year’s. This year I spent nights before dreaming of Trubs and Tiger dying in my arms over and over every time I went to sleep. All day for days before my birthday, if I closed my eyes I could hear Tiger’s death rattle in my ears as clear and sharp as when it happened.

I hadn’t spelt properly for days. I was and am still exhausted from weeks of unrelenting diarrhoea. The migraine was soaring because it was the peak of my cycle and I doubt the pills are fully effective with my current digestive situation.

Stephen took the day of my birthday off and was planning to take me to the Zoo as my present. Both of our physical conditions and financial situations on the day nixed that idea, so we stayed home to watch movies. Then the neighbour across the road (road being a busy four lane highway) who appears to have received a drum kit for a recent birthday decided to hold band practice at his house for the entire day.

The day just got progressively worse and worse until I was sitting like a statue in my chair unable to move my head at all to nod or shake in answer to questions because the pain was that bad, tears streaming down my face. Not able to escape the noise. Not able to do anything but endure it.

Early that evening I laid in my bed wishing I could just stop my heart from beating.  If I had pills that I could overdose on I would have taken them. I thought of walking down to the train tracks, and the *only* thing stopping me was I was absolutely petrified that I would get it wrong and simply mangle myself rather than dying outright.

I spent hours wondering why I was fighting, why I was continuing to breathe, and I couldn’t come up with a single reason. Not one.

I tried opening a few presents – I’ve been showered with presents from my friends this years – but when looking at the presents I felt …. nothing. Nothing good, nothing bad, nothing. That wasn’t fair to my friends. So I packed up all the gifts into a bag and put it away until I felt happy again. Then I could open the presents and squee and thank them profusely and all the things I normally do.  Only its been two weeks now and I’ve not felt happy or joyous or even normal.

I’m not totally stupid, I rang my GP the next morning for an appointment.  He referred me to a psychologist.  She has had me on an anti-depressant for about a week now. It seems to be helping. I’m coping better with small setbacks now, they are no longer the end of the world as they had been recently. Unfortunately I’m still not finding a reason a reason to live, other than habit. I have no purpose or use. Everything is so freaking hard and hurts too much. It’s too much of a struggle most days just to “appear” normal that there’s nothing left over for anything else.

I was reading an article of self-respect the other day and this paragraph leapt out at me:

Every encounter demands too much, tears the nerves, drains the will, and the spectre of something as small as an unanswered letter arouses such disproportionate guilt that answering it becomes out of the question. To assign unanswered letters their proper weight, to free us from the expectations of others, to give us back to ourselves — there lies the great, the singular power of self-respect.

Joan Didion on Self-Respect via Brain Pickings 21 May 2012.

Well I don’t know about self-respect, but I’ve certainly keenly felt a loss of identity over the last few months. I don’t know who I am anymore. I don’t have any purpose to my life.  “Getting better” is such a selfish self-centred quest and yet I have nothing left over to give anyone else. So I am mired in my guilt that I cannot be who I think, I feel, I believe others want me to be.

So I don’t answer emails. I don’t pick up the phone. I feel desperately lonely but I don;t reach out. And above everything else is the all-consuming guilt So every morning I think “Today I’ll write those emails”, “today I’ll write out those cards”,”today I’ll pick up the phone” but then today is full of migraine pain, or diarrhoea or appointments or noise or all of these things so I don’t and the guilt grows.  And I just want to pick myself and shake myself and say “what is wrong with you? you didn’t used to be like this?” and I hate myself just that little bit more.

So I’m writing this long blog post in hopes that other people will understand.  But I’m afraid that no one wants to understand. They just want the old me back. I want the old me back. And I’m just so very very scared that she isn’t coming back and this is here to stay.





I have an enormous amount of head pain today. So everything is being done … gingerly. One of my neurological drugs has been “retired” and taken off the market. Unfortunately the whole family of ergot-based drugs has been “retired” so there’s nothing to replace it with.

It’s also one of those “don’t stop taking this drug suddenly” ones and well, we didn’t realise it was more than a temporary production glitch until yesterday – the day I ran out.

So things shall be quiet for a few days – not that anyone will notice the difference 🙂

It’s been so long since I’ve managed to successfully write an update post, I’m not sure where to start.  I have literally dozens of partially written posts but run out of energy or vocabulary skills or computer skills before I can get to the post point.  Hopefully this one will be better.

From a health perspective, we are into the second Zoladex implant now. The week of the implant is the week that my hormones are their lowest and I had a really good week that week. The migraine eased off a little, but mainly I just seemed to cope with life a lot more. I didn’t break down with things didn’t go to plan, I could be flexible and move with changes.  Something I was always very good at but can’t seem to do at all now.

Also I’ve noticed the last few mornings that no matter how cold I am during the night, I am sweltering around 6:00 or 6:30am so maybe I’m starting to get hot flushes? Maybe the implant is starting to work?

I have permanent diarrhoea now.  I have a gastroenterologist appointment scheduled for 12 September. I’ve had a wonderful conversation with my gut GP on how you too can plump out and firm up your stools! I am so filing all of this information away for when I get netter and get back to work!  I’m going to have some great stories!  What do you think, one for storytime?

Saw the dentist last week, I had broken a filling and jammed the broken piece up into the gum area, during my sleep!  Apparently due to always being in pain, even when I sleep, I’ve been clenching my jaws so much I’ve cracked most of fillings, worn most of the enamel off my of my teeth and broken a large chunk off an otherwise normal healthy tooth.

My luck with medical staff here in Melbourne is still holding out, I have discovered a fabulous, very considerate dentist who gave me very dark shades, moved the bright light away from my face as often as possible, used lower settings in the drill whenever possible etc in deference to migraine. She really understood my needs better than I did at the time.  She’s also lined me up for $3500 worth of fix-up work in my mouth, replacing fillings, capping teeth and making me a mouthguard so I do clench my teeth a night.  Oh that will help my exciting sex life!

Let’s see what other news ….

Housemate very kindly found some bits and bobs and we put together a spare bed frame so I’m now sleeping in a real bed instead of a mattress on the floor.  That was really kind of him!  Given my current digestive issues, getting up off the floor in the middle of the night for an emergency bathroom run was not the highlight of my day.  Now I get to roll out of bed onto the floor to start the emergency bathroom … well you get the idea 🙂

The bungalow is still not ready for me to move into.  Apparently it takes the owners, real estate and local handymen two months to being around three sheets of corrugated iron.  Who knows how long it will take them to actually nail them on the roof.  We wont mention then starting on the inside, because that involves an insurance claim …. {sigh}

At the end of September I’m heading up to the Central Coast of NSW to attend a friend’s wedding.  The plan is to stop in a mum’s place on the way home and collect some more items, like maybe a second pair of shoes, some more clothes and a bit of my stitching stash.  At this point, I’ve been in Melbourne two months and I’m still living out of the suitcase I packed for two weeks.

So all in all things are not going to plan, but life is all an adventure.


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