Pia‘s recent enquiry in the combox, about my health, reminded me that I hadn’t given a health update for a while. It’s one of those things i meant to do and just never got around to, and then part of me was reluctant to post about this because so many people have/are going through really serious illnesses, terminal illness even, and i don’t like to whine about my comparatively minor health problems, but other blog friends have also asked via email and so I feel like i should do a follow up post on what’s going on in my head.
Did i tell you all that my meeting with the neurologist a few months ago was a complete nightmare? I think i did, if i didn’t, well you know now. Yes, lets just say that the neurologist had a rather ‘holistic’ aproach to dealing with health problems. Taking his advice would have meant i had to, in his words…‘wrap’ myself ‘in cotton wool’, ‘listen to my body’, ‘lie down in a dark room’ and ‘drop the kids off’ with someone else‘ every day when i was in pain…needless to say, life goes on whether or not my head is hurting or whatever so it simply isn’t practical advice. I near enough begged for medication that would enable me to live a reasonably normal existance, but Mr Holistic wasn’t having any of it.
Immediately after seeing the neuro, i got back to the car and i had a good blart (a snotty crying session ) and said to my dear mother who had accompanied me to the appointment, that i could not understand how he could expect me to live like this for an indefinate amount of time, possibly for all of my life, maybe.
I went home feeling like i’d been resigned to living a life of moderate-excrutiating daily pain and felt that because of Mr Holistic’s dismissive attitude I had been sentenced to living a half life of telling the kids to ‘shush-be quiet-use your headphones-shut up-don’t be so noisy- shut up-must you talk in the mornings- shut up-don’t turn the light on its too bright-shut up-I have to go lie down so please don’t kill one another-shut up-blah blah blah’.
I thought that after 3 – 4 years of chronic daily head pain, seeing the neuro was going to be the answer to my problems…surely he’d know what to do when the G.P was running out of ideas and medications to try on me.
I was so wrong.
But one good thing Mr Holistic did tell me though, was that the medication i was taking at the time was nasty nasty nasty.
I kind of knew it, but when you walk around most days feeling like someone has stuck a scewer in your eyeballs and is pounding your head with a housebrick, you tend to take anything your doctor is prepared to prescribe. I didn’t ask for the meds, i just took them.
Of course, the drugs rarely worked (they usually took the edge off the pain though, of you know what i mean) and a lot of the days, the pain would be unbearable with or without them but at least i felt like i was doing something about the problem and hey… they…spaced…. me…. out….. man.
Back at my doctors for a follow up appointment after seeing the neurologist, i relayed his holistic advice to my doc and though never (of course) stating that the neurologist had been utterly useless, she did agree with me when I said his advice had been utterly useless and impractical. As a single mother of two children, life still goes on and my family needs my input and attention. I can’t just ‘listen to my body’ (another piece of the neuro’s sage advice, along with yoga) becaus ehalf the time my body tells me ‘you’re knackered, go to bed and stay there for at least 48 hours’.
Since then, over the past few months, my G.P and I have worked together to try all sorts of combinations of drugs (triptans specifically) to combat the chronic daily headache and eye pain and to try to treat/prevent migraines, but so far nothing has worked. Now we are trying something new. I am currently taking anti-epilepsy medication, carbamazepine, and also a drug that is often used for depression but has been found useful to some chronic daily headache sufferers, amitryptiline…in addition to this i’ve weaned myself totally off codipar and now only take paracetamol for the pain. It doesn’t work very often, so i try not to take it since there doesn’t seem much point, unless the headache is extremely mild, which tends to only happen on 3 or 4 days a month, if i’m fortunate.
When at my docs in December the G.P asked me to relay to her specific details of my headaches, eye pain and migraines and i pulled from my bag a rather mucky and tattered looking notepad in which i record the tablets i take (otherwise i would forget and take a possibly lethal dose) and of how i was feeling when i took it (i don’t write p****d off, even if that is how i feel) …the writing is often scrawled and written in different coloured ink from one day to the next and it really is a very disorganised account (though i understand it)…she was therefore not impressed and asked me to make a chart of some sort, to record the headaches, migraines and eye pain, and so i kept a ‘pain diary’ for a month and this is a pic of a section of it:
When i went back to the Doctor last week she read it through and said she really isn’t happy that i am having so much pain (and other symptoms) and she is referring me back to the neurologist.
She hinted again that this could be to do with something that hasn’t been picked up on yet by the neurology department and said that for the frequency of my migraines, eye pain and chronic headaches , the next thing likely for her to do would be to prescribe ‘hospital level’ drugs which she would really rather do only after the neurologist has had a chance to see me again.
Just to mention something about about my first visit to the neurologist (while i remember)…
Funnily enough just before my 1st neuro appointment i went to have my eyesight checked to make sure their wasn’t a problem with my sight and the lady who did my exam asked why i’d made the appointment as i wasn’t due to have a check up and don’t wear contacts or spectacles, i told her about the neuro appointment and she said that she had seen a few of the neuros at the same hospital and after a couple of years they were still not sure what was wrong with her. She told me to not expect to get a diagnosis or even to get a lot of support, she actually said that everytime she went there she left in tears! I was so sorry for her because she had also had a battle with cancer around the same time and she needed all the support she could get.
Anyway, the eye test came back fine, so i went to the neuro with a bag full of meds, my eye test results and a list of my symptoms which the doc had advised me to make because i am so forgetful.
And it was the worst thing i could have done to have walked in there and said ‘these are my symptoms and this is the result of my eye test’…because he immediately took the attitude that the eye test had ruled out any problems in my brain and i therefore didn’t need a scan.
He ruled out all of my symptoms (twitching, numbness (started sawing through my finger with the bread knife one day and didn’t even notice till i saw blood on the breadboard), pins and needles , flashing lights appearing before me when there aren’t any there, vagueness, forgetfulness, stumbling, putting wrong words in sentences, stuttering on occassion because i forget the word i am going to say etc)….he said all of that is perfectly normal and to go home and follow his recommended holistic approach…which included eating feverfew leaves if i could grow them in my garden. (i tried that years ago and it didn’t work).
The next time i go to the neuro i am going to handle it differently and not go in there saying ‘these are my symptoms what is wrong with me?’. They can figure me out instead. And good luck to them.
Of course, what this has also meant is that I have generally had to learn ways of going on with my life relatively normally and it does mean that i haven’t blogged as much, responded to comments as much, read blogs as much etc, while I’ve been trying out all these new medications and so I hope regular readers and friends of Ukok’s Place and the host of this blog, know that i really do appreciate your continued visits and understanding. In some ways, the new direction the blog is going in is also about simplifying and paring down my life in some ways, ways that reflect a need in me to live more simply, because simple, is just about all I can handle. Last year was a bad year for me, lots of crappy stress and bother that i needed like a hole in the head, this year i’m trying to cut even more dead wood out of my life.
So there we have it. My tale of woe. I will let you know what happens in a couple of months because it will probably take that long for me to get an appointment.
Thanks for reading this exceedingly long post.
p.s. i’m so sorry if sometimes/all times my posts come out back to front and upside down. I tend to write first paragraphs last and last ones first, i don’t know why it happens that way but it just does, i hope it doesn’t annoy you all too much when you read it.
Thanks to all those who have enquired about my health and thank you so much for caring enough to ask. It sometimes seems to me that I live in a world of ‘how are you’s’ …people ask ‘how are you?’ and often don’t even wait for the answer…it’s become a greeting in a way, like ‘hi’, they forget there is a question mark on the end.
It means a lot to me to know that there are people all over the world who care about and pray for me and mine. (and you are often in my thoughts and prayers too. I pray at each Sunday Mass for the intentions of all my blog buddies)
(((Big hugs to you all)))