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Tag Archives: migraines

And I do mean crap in the most literal sense. so feel free to skip this post.  This is more of a health journal article.

I couldn’t see my usual doctor on such short notice yesterday so I saw another at the same clinic.  I cannot praise the clinic highly enough.  Both doctors I have seen so far, and all of the reception staff, nurses and vampires have been caring, efficient and very capable.

So I saw a second doctor yesterday about the diarrhoea. After a thorough discussion of has this occurred before, and some family history, (Coeliac disease on mother’s side and aggressive bowel cancer on father’s side) the doc has decided to do a thorough investigation of my gut.

At present I’ve provided samples for a broad spectrum of differing gut infections and received antibiotics and stuff to fix the current issue.

The doc has me scheduled in a few days (when I am rehydrated enough) to provide blood samples for the Coeliac gene marker and test for other markers that Coeliac sufferers tend to be low in. This is one way to prove conclusively whether I am Coeliac or not.  I’ve been skating by on a gluten-intolerance theory for years as it keeps me mostly healthy and seems a better fit than the IBS I was originally diagnosed with.  They can’t test me for Coeliac the traditional way as I need to eat gluten-containing foods for a month before administering the test and I can’t do that. So this is an alternative way to determine if I am a Coeliac or if I’m getting sick from these foods for a different reason.

After that we will be looking into tumours, polyps, testing for bowel cancer etc. But that is stage three. We’ll work on this progressively.

So now I have two general practitioners, one looking into my digestive system, the other looking into my head.  I have visited Centrelink who had lost half of the paperwork I submitted and that is sorted so now it is a waiting game to see whether they approve my application for disability or not.  I still have to find a dentist for a cracked tooth and make an appointment for a clinical psychiatrist for proposed psychiatric disorders.

Are you sure I can’t just give up? So very very tired.

I have a bad case of diarrhoea, the usual massive migraine and an extreme case of the blahs …

I saw the general practitioner/consulting psychologist regarding my claim for government disability on Friday. She agrees that medically I have a very strong case, but bureaucratically my claim may fail.  As we don’t know the root cause of my migraine technically I am still in the “diagnostic” stage of my treatment.  Apparently the system doesn’t understand people who are two years in chronic pain without a correct working diagnosis.  So although she is going to recommend they approve my claim, they may reject it on this basis.

She was very concerned about Bruce, the blob in my head.  As a GP, she would investigate this further to determine if there is a link between it and the migraine, exactly the ramifications of surgery.  If a world-class neurosurgeon was prepared to view my case why did a neurologist talk me out of it?

She also said that as a psychologist she wonders if my migraine is psychosomatic in that I am “a career-driven woman who apparently dealt with any set-back in her personal life by pushing herself further and harder in her career until her body rebelled and said enough”.

I pointed out I had a really good supervisor at Midland and I was really excited about the work I was doing there, training cataloguers, the social media training we were running and future plans when then migraine happened as opposed to the horrible conditions I was in when I exited RMIT two years earlier, or when my marriage ended ten years prior to that.  Should my body have “rebelled” at one of those much more stressful times?

She said it didn’t work like that. That this built up over time and all of these incidences are factors in the migraine cause.  She strongly recommended I see a clinical psychiatrist.

However she also diagnosed me with misophonia. This again sounds fine on the surface, as my migraine is hypersensitive to some types of noise and I do have an irrational hatred to the object or person creating the noise that is hurting my head. The cocktail of drugs I’m on usually help reduce that “irrational hatred” reaction.  Please note at this point, that I never ever act upon these feelings beyond a dirty look or a mutter under my breath.  I know it’s irrational and I know the world cannot conform to suit my migraine.

However, looking into misophonia further, the classic reactions are to “other people eating, breathing, sniffing, or coughing … repetitive movements, such as leg-tapping, nail-biting, the rising and falling of the belly“.  I have none of this.  My migraine is set off to a range of sound that include children shrieking, babies crying, most forms of music, lawn mowers, most powers tools, bathroom extraction fans etc. The onset of Misophonia is said to occur “in childhood just prior to or during puberty. Often there is a single initial trigger (such as a parent’s or sibling’s noises)“. Again, nothing at all to do with my migraine. So I think this one may be a furphy.

However it was a very interesting and animated couple of hours worth of conversation before I came home and collapsed.

I will be honest, I don’t like the suggestion that the migraine may be psychosomatic. I threw walls up around the whole conversation as I don’t want to even think about that being a possible answer. The thoroughness of my rejection is in itself possibly something to be explored.  Hairy Harry, if you are around and reading, could you send me an email – this might be your line of expertise?

 

 

comes the not so good days …

Apparently as well as memory loss I now also have memory befuddlement.  Conversations and events I remember as being only a half hour ago, were in fact days ago. How do you time and date stamp your memories?

Sorry I haven’t been online much the last few days.  I spent the early part of this week getting documents ready for the welfare system. And the second part of the week recovering. Long complicated forms, trips into the city because I forgot my bank account PIN and then over an hour in a waiting room filled with screaming babies, shrieking toddlers, mobile phones incessantly going off and being ignored by their owners, others playing games on their phones, with the sounds turned on … I was a mess by the time it came to hand my papers in.

So the rest of this week has been quietly recovering.  It took me four hours and five attempts to place six stitches yesterday.  It took me three hours to find two skins of DMC that were in one of four envelopes.  It’s just one of those things and there’s no point feeling negative about it.  It just IS. That’s the way it IS and I need to just have patience with myself until the pain calms down to manageable levels again.

However the good news is that paperwork has been completed and has been submitted. I have a hearing on the 20th to determine if I am to go to a disability pension.

Hmmm … let’s go back to the beginning.  When I first moved to Canberra we thought it would take the neurologist a couple of months to hit upon the right combination of drugs and then I’d be right back in the workforce. Let me reiterate, I fully expected to be working full-time within 3-4 months. 6 months if I needed surgery on Bruce (the lump in my brain).

So the welfare system’s job search capacity (JSC) listed me as unable to work for 12 months, with graduated return to work after that. Well that’s not what happened.  There were some kerfuffles a couple of months ago but the local branch kept accepting my medical certificates exempting me from the need to search for work requirement that is usually tagged to the payments.

When I turned up in Melbourne, they explained that the JSC is only done every two years.  So according to last year’s JSC I should be completely fine and working by now.  They would not accept my medical certificate that I was not capable of any work because that contradicts their JSC.  So instead they asked me to fill out a disability assessment form.

OK I might be getting all high and mighty here.  But I feel bloody uncomfortable filling out a disability claim form simply to circumvent bureaucracy. You hear horror stories every day of people worthy of disability status who have been battling for years and without success and I’ve been asked to do it to satisfy a bureaucratic nightmare?

A part of me also does not want this, because this will be “proof” that I’m disabled.  I’m not disabled damnit.  I’m in chronic pain with associated cognitive impairment and memory loss.  If we fix the pain then hopefully we can fix the rest. I refuse to give up I refuse to give in.

However, I do have chronic pain. I do have cognitive impairment. I do have memory loss. Some of these issues are still getting worse. None of them have been cured. I am at a point where I cannot live independently. Regardless of the past or the future this is where I am now.  So for now I have submitted the paperwork. There is no guarantee that the claim will be approved. If it does, then financially I will receive a little more money per week than I do now.  More importantly, I will have access to some disability access services that will assist me towards independent living, and that will reduce some of the stresses which should help the overall situation.

If the claim is rejected, then it will at least have prompted the system into a new JSC for another 2 years. Bureaucracy at work. The new JSC is scheduled for 20 July.

 

 

Yarnbombing in my local shopping area

We had the Zoladex implant put in last Tuesday.  I’ve felt no change, the migraines are still coming as hard and heavy as always, but that as to be expected. The endocrinologist said it would be the fourth month in that we would notice any impact.  So it’s a holding pattern or waiting game for another three months.

So the only thing to change in the next three months is to watch my depression.  I’ve been working on keeping a healthy, positive attitude since Tuesday. I’ve had my stitching out and I’ve usually found time somewhere in the day to get a few stitches in each day. When I have the right piece for my current skill level, stitching is a calming, soothing and rewarding past time. I always seem to forget this when I stop stitching for a while. So I feel better for this.

Snowcake soap from Lush

Also I have been pushing myself to go out more.  Last Wednesday night one of the Lush stores in the city had an invite-only night event for their limited Christmas in July range of bath products. Although I lasted less than an hour, and needed Stephen’s assistance to get home, I still went.  I enjoyed myself and I fell in love with a soap.  Their snowflake soap is a milk soap and oh it is soooo nice.

On Sunday I went out again, and this time Stephen and I went to the movies. My first time in a cinema in nearly two years. We went to a Bean Bag screening of Brave. The Bean Bag cinema was perfect for me!  Only seats 38 people and the sound was therefore turned down even though we still had a huuuuuuuuge screen!  The film itself had one song at the beginning and at the end that I well “endured” would be the word. Other than that, judicious use of earplugs got me through the loudest parts.

Disney Pixar’s Brave

The film itself was wonderful as was the Pixar short before it!  Brave is quite simply a story about a girl and her mum.  The storyline is predictable but sooo much fun. The animation is jaw-dropping!  There were times I couldn’t believe I wasn’t looking at cinematography! It is worth seeing this one on the big screen and it’s worth seeing it twice – because I’m sure on the second go through we’d see so many details we missed by focusing on the story on the first watch.  There is just so much background detail in each scene!  This movie will be added to my DVD collection as soon as possible!

Some things are still not going as well as I’d like, but the two housemates, Stephen and R, are helping me immensely and I don’t think I could have been doing any of this without them!

Abby sitting on back deck eating grass

In other news, Abby is with us now, but the Bungalow is not ready for me to move into, so all three cats are in the house together. They are not getting along.  R installed a set of child-gates separating the house into two sections, so in the evenings, his boys are in one of the house and Abby is in the other.  During the day, Abby is outside while Xavier and Spitz are indoor-only cats. That was an incredibly nice gesture from R to help the cats and all of our nerves.

I put a crick in my neck somehow while sleeping one night and had limited movement of my head the next morning.  R took the day off work as he also was feeling quite ill.  He gave me the number of his massage therapist and then drove me over there and introduced me that afternoon!

On Friday afternoon while I was in the middle of washing, the washing machine decided to break and flood all of the water from its insides, to the floor in under a minute.  The laundry floor in this place does not have a drain.  The laundry floor in this place is higher than the lounge room floor.  The lounge room floor does not have a drain.  The lounge room floor is lower than the doors leading outside.

The lounge room was over 2 inches deep in water in some places …. I mopped it all up using a mop and bucket and towels. Stephen was so kind to cancel his evening plans and come straight home from work and help me move the washing machine and fine out what had happened and how to get the rest of what was in the machine out and on the line.

So my situation is improving. But mainly it is improving because of the kindness and assistance of my two housemates.

It is now evening and I have seen the GP at the Northside Clinic.  He is quite happy to take me on as a patient.  He was a little surprised at the reactions I’ve been getting from other doctors around here and he diplomatically suggested they may have been a little “unimaginative”.

I feel really comfortable and assured with him. I’ve already signed forms so he can approach my former GP for a full case history of drug trials and approaches that have already been used on my migraine. He will speak with my endocrinologist and about my case and ascertain directly from her why we are using the Zoladex and what she expects him to manage in my case over the next four months.

He’s confident in his abilities to implant the Zoladex as he has used in on patients before, just not for migraines, usually for cancer-related treatments.

I think life is looking up again!

For dinner tonight I chose smoked salmon and fresh goat’s cheese on toast (haven’t yet found gluten-free bagels).  I embarrassed the boys with my moans of gastronomic delight.  I’m getting my taste for food back again!

My supplies for the Passione Ricamo Mystery SAL arrived in the mail today, so just a floss toss to choose between the fabrics and I’ll be set to go on 1 July.  JulieD should I bring these over on Saturday?

Finally I’ve decided to restart the Project-a-Day blog with renewed vigour. As a couple of the regular readers have pointed out, the blog is useful for introducing many designers and designs that have not been recent household names. And frankly what kind of Enabling Royalty would I be if I stopped my main source of enabling 🙂

Stand by for a new Project post to be started as soon as this post is published.  And a round of new cover pages to be scanned in tomorrow …..

I haven’t posted here for a couple of weeks. Frankly I’ve been depressed and overwhelmed by trying to sort out my health needs. A few things haven’t gone to plan and rather than shrug it off and figure out a Plan B (C, D, E, F) I’ve just sunk into a morass of self-pity.

This isn’t like me.  Usually when it’s something physical, something tangible, something I can do something about, I just get in there and do it and keep doing it and keep fighting until I get what I need/want.

Not this time, this time I just feel ground down. Usually when I’m like this I say “my get up and go, got up and went” this time I think it felt ground into the dirt.

I saw the endocrinologist three weeks ago.  I was in and out of the office in around 5 minutes. She asked why I thought my migraines were hormonally related. I explained about the migraine being a little less on the first day of my period and I wanted to explore that further.  She responded that she can give a course of treatment that could artificially mimic menopause, so every day of the month would be like the first day of my period.

I pointed out that the improvement on that day while significant enough to be noticed, wasn’t significant enough for a quality of life change, to allow me to work or go out in public for extended periods of time. I asked about other areas that the gynaecologist raised such as my internal temperature regulator (part of the thalamus) being out of whack, or that I receive the same temporary improvement from eating a good meal.

She responded that I had come to see her, that out of the options she offers her patients, this is the only one that she can offer me. So she sent me off for tests to see whether I was healthy enough to start this course of treatment.

As I told JulieD later that day, I’m happy that we have a course of action, but I’m not impressed with the course of action.  Again it appears I have a specialist who seems to think that a small improvement in pain management is the end goal. No-one is interested in the cause of the migraine or how to fix it.

Actually that’s wrong. It feels like “you’ve come to see me, out of my bag of tricks, this one is the only one I can offer, so this is the one we are trying”. The amount of value or benefit from the treatment seems to be secondary to the fact she can offer “a” treatment.  That’s my impression.

Two weeks later (last Tuesday) I went back to the endocrinologist to get the test results back. Thyroid fine. Bone density fine. Vitamin D low.  That’s not surprising considering bright sunlight heightens the migraine!  Prior to that I kept out of direct sun a lot anyway as I have fair skin and burn easily.

So then I am given a script for an implant, Zoladex. It’s a once a month implant.  I am to return to the care of my GP for the next 4 months and see the endocrinologist again at the end of October.  The  GP will manage my care between now and then. She asked when I was returning to Bowning. I replied that I would be staying in Melbourne; that I had decided to stay here while going through this drug trial.  She became quite waspish and snapped “well you should have told me!” I asked why this was important but I didn’t receive an answer, she just handed my file to the receptionist and informed the receptionist to take down my new address and then she went back into her office.

So all of last week I was ringing around the local area trying to find a new GP. As well as administering this for the next four months, I need one who will obtain my history from my old GP and write the medical certificates for the government welfare agency so I can still get paid some benefits. I’m not even thinking of the review at the end of next month!

I made appointments with six different medical practices in the local area last week.  Every single one of them turned me away as a patient because my case was too complicated.  No male doctor would touch the implant. Every female doctor recoiled in horror at the implant and refused to consider it’s use on a woman of only 40 years of age. Didn’t I know the potential side-effects?  Well no actually I didn’t.

I do now. Stephen and I looked them up over the weekend and studied them all. As well as the usual rash headaches, depression etc. There are some very rare reactions that are quite scary, pituitary tumour, (what another one?) pituitary haemorrhage and psychotic disorder. Emphasis on very rare.  But then again, I’ve never been one to go with the crowd ….

The reaction the doctors seem most concerned about is that this drug treatment has a chance on bringing on proper natural menopause. Given my current circumstances and choices throughout life, that one doesn’t bother me as much as it could some people. But I would prefer to go into this with that knowledge beforehand.  The fact that the endocrinologist listed none of the potential side effects beyond rash, sweating etc really really irritates me.

So spending an entire day of waiting in doctors receptions and then being told no we wont do that, no we wont take you on as a patient, no we don’t take histories from previous GPs, no we wont prescribe your medications without a brand new letter from a neurologist, no we don’t write reports for the welfare office until you have been a patient here for over a year, I became exceedingly discouraged. I became depressed about everything in my life.

It looked like I may have to go back to Yass and find a little flat there for myself for the next four months so at least I can see my old GP for my medical needs. I can’t move back in with mum – my sister and her kids still need her.

And I’m still wondering why I’m trying to find a doctor to put this implant in, that might bring on menopause or fuck knows what else when the only possible benefit is a slight lessening of the migraine and a slightly faster bounce back. It’s still not fixing anything. It’s still labelling my migraine as intractable. I just don’t know where to go from here …..

On the positive news front, I have an appointment this afternoon with the Northside Clinic. They have a particular focus on providing care for Gay, Lesbian, Bisexual and Trans communities so they are presumably capable of dealing with complicated patients.  My appointment is with the leading Doctor so we’ll see what he says about my case this afternoon.  Hopefully if his clinic does not take on my case, he can at least give me some constructive suggestions on where to go next.

Xavier – taken 8 June 2012

Well stage two of the Melbourne move has now been undertaken.  We moved Stephen’s stuff into the share house over the weekend.  So we have Housemate R, Stephen and I all in the same place now.  Just waiting on the landlord to fix the hole in Bungalow roof and patch the ceiling and I can move my stuff and Abby in.

In the meantime Housemate R and Stephen are both ensuring I remember my meds and eat regularly. This whole share housing lark is going a lot more smoothly with us all in our 30s and 40s than it did when I was share housing with a heap of kids fresh out of home in my Uni days 🙂  A lot of joint decisions and furniture placement are being made sensibly without tantrums and drama – it’s all quite novel really 🙂

I don’t have a dedicated stitching spot yet, but both of the boys have promised me one in the very near future!  They have offered furniture and location but we just haven’t gotten said furniture into said location yet 🙂

Spitz and Xavier, Housemate R’s two cats were a bit unsettled all weekend with all the furniture arrival and then room rearranging, but they should settle down this week as both the boys are back at work for the week now. It’s Monday morning here.

I’m missing Abby like crazy, but she has settled into life with Miss A and her household quite nicely and sleep’s on Miss A’s bed each night.  I suspect when Abby does make the move down here, Miss A and her daughter may be acquiring another cat of their own, such is the impact Abby is having on their lives!

The migraines have been getting progressively worse again over the last week.  This fits with the hormonal theory as now is my ovulation point or when my hormones are at their highest.  So they should start to slowly ease back off again from now.  However my next appointment with the endocrinologist is tomorrow.  If my tests all came back well and good I’ll be going on some very expensive medications that will hold my hormones to their lowest ebb all month long.  This does not mean a pain-free Mel, but it does improve the situation.

Also, even now, I’m still recovering from the migraine upswings faster than I was at Bowning. I’m measuring the subsidence in hours instead of days. That alone proves this move was invaluable, even if we get no further benefits.

Yes this update is way way overdue. I saw the endocrinologist on Tuesday. She firmly believes my migraine is hormone related and recommends putting me into a state of artificial menopause.  My migraine is seems less on the first day of my period, and this is when my hormones are at their lowest, so she recommends mimicking that for the entire time.

This will be a three-month trial.  First I had to do a few tests to check that I am healthy enough to go through menopause and to provide a baseline so we can check that we’re not creating other problems over time.  If this pain-management solution works, I may well be on these drugs until my body goes through menopause naturally.

We get the test results (Vitamin D, thyroid and bone density) back in two weeks and then all going well start the drug therapy trial.

I’ve put off writing about this because I’m feeling conflicted about it all. I’m happy in that we have a plan and are moving forward but I’m frustrated because once again the specialist is only looking at pain management. No-one is looking for the root cause or elimination of the migraine.  The neurologist labelled my case as intractable and no-one is questioning is that.

I asked the endocrinologist about the thalamus and increasing temperature levels. I asked about some food intake also reducing the pain to the same extent that the menstruation does.  I was basically told that “you’ve come to see ME. Out of MY usual therapy methods, I feel this one is the best option for your case”.

I’m not filled with confidence that we’re with the right specialists yet. And I’m incredibly disappointed that she is only talking pain management.  I don’t want to take the edge off the pain, I want to get rid of it. I want someone to look for a root cause and end the migraine. I’m tired of feeling like a platypus walking past a field of animals, asking “are you my mummy?” and having them all give me their best guess.

But this is the specialist we have. This the one that’s been pointed to me as the next logical step so we try her drug therapy. Who knows it might work better than she hopes?

Today I went into Melbourne CBD.  I got a quick haircut at one of those Just Cuts places that cut your hair dry, in and out under 15 mins. A quick lunch in a food court.  And bought five items in a supermarket.

By the time I trudged around a few blocks of Melbourne, past all the construction work, through all the crowds and got those three items done, I was shattered. I was exhausted. I was in so much pain I had tunnel vision, I wasn’t walking straight and I still had to figure out how to get back to where I was staying.

After wandering aimlessly around a few blocks I stumbled across a taxi rank. I literally cried all the way home in the taxi. And that took a while as we got stuck at road works repeatedly.

But it will get better. Specialists appointment is next week so hopefully that will help. Also I get to visit the place Abby and I hope to move into tomorrow so that’s exciting! I miss my Abby Cat.

The flower planted at Trub's gravesite is blooming

 

I had an image in my mind this morning of brains as crystal lattices wrought by the finest glass sculptors with “visible” electrical impulses moving across the surface as if to an unknown melody.  My brain lies below shattered into a hundred pieces with a few sparks occasionally arching from one piece to another.

Self-pity even in my dreams.

However the reality is, I do feel a little like I’m drowning at the moment. I am way behind on my emails and blog posts and I have not acknowledged the time and effort people have made in reaching out to me and I do offer my most abject apologies.

All I can offer in the way of an explanation is the truth. I find it very difficult to write a sentence to string words together coherently when there is noise around.  When there is silence, in the morning, as there is now, I can work.  When there is outdoor equipment, lawnmowers, road work, building construction, crop dusters, I find it a struggle.  When I hear voices such as a radio or another person in the house, I cannot work at all.  My concentration is completely shattered the second I hear a voice. i literally forget my entire stream of thought and cannot start it again until there is silence for a good ten minutes or more.  I have lost the ability to mentally block out noise.

For nearly a year now, people have been offering me noise-cancelling earphones and I’ve resisted because when tested, I’ve not found a set that blocks out the range of noise that flares the migraine (the higher-pitched noises such as chain saws, children shrieking etc) unless it completely blocks all noise.  Without mum here, I am completely on my own. To hear absolutely no noise at all – to be completely deaf, scares me. I want to hear *some* amount of noise even if it just a car turning in the drive or a knock at the door.

So I haven’t found a solution that works yet on the noise issue.  So I work on the blogs and I type on my email and communicate mainly now while mum is at work.  Oh sure I can dash off a quick glib remark or one-liner of encouragement, but anything where I have to ponder or think, or even really read and absorb has to wait. And those emails and posts are piling up.  Ah there starts the first whipper-snipper of the day. Wait while I go and close the doors and windows.  That’s the neighbour over the back who buys old equipment and fixes it himself.  I never knew petrol whipper snippers usually came with mufflers.

So anyway it is now April. My goals for 30 April:

  • Catch up on unread and responded to email from March and April
  • Finish tidy up on Project-a-Day Blog.

The Project-a-Day blog, like this one was migrated on 25 February and I still haven’t finished cleaning up the files that were moved over or responded to comments that have been made in the last month.  So each day I plan to work on the three months of that day.  So today being the second, I will tidy and check the files and respond to comments from the second of January, February and March so by the 30 April I should be all caught up there too and in May I can turn my attention to this blog.

Also I’ll be able to do this during the days and hours mum is at work, so I will treat that time as “work time” and concentrate on it and see how I go.  Some days will be better than others.  Today I am now finished until that whipper snipper is.

Time to whimper in a corner for a while.

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