Hello everyone - a bad sufferer. Here's my story

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Hello everyone - a bad sufferer. Here's my story

Post  scoopyx on Sat Oct 29, 2011 12:19 am

Hello everyone.
I'm a 46-year-old bloke who lives in Ballarat, Victoria, Australia.
I have been a migraine/daily headache sufferer since my late teens or early 20s.
I suffer from depression and have at least two crush fractures in my spine which I suffered in my mid-30s.
It turns out I have low bone density in my spine, which I guess contributes to a neck pain problem I also have.
I had denervation performed on several facet joints in my neck last year in an attempt to ease the pain, which caused some shocking headaches, and it helped a bit.
But I have only recently found out that my cortisol levels are wrong, which can cause all sorts of problems (depression, low bone density and bad headaches among them!), and I'm waiting for medical advice on some form of treatment.
I'm seeing a neurologist (again) on Tuesday this coming week, and on his advice my doctor gave me Epilim to try but I've stopped it after only three days because it made me feel just awful and caused me to miss work last night (I work at night as a newspaper sub-editor).
I am very, very down at the moment because I'm only a casual and I'm afraid that I'll lose my job because of this problem.
My doctor has given me OxyCodone - and it did help - but I can't have it all the time because it's apparently so addictive.
So that leaves me to struggle along, taking upwards of eight Mersyndol tablets a day and battling my mind (i"m also on anti-depressants).
My lovely partner is very, very supportive and understanding.
She's even taken me to the emergency department of the hospital where she works (she's a biochemist) armed with a letter signed by my doctor, twice before when I've had a severe attack, and they refuse to help me other than to put in a saline drip.
Anyway, I won't prattle on anymore - I'm just so despondent at the moment and feeling so sick that I thought I'd join up and whinge to others who know what it's like.
Thanks for reading.
Regards,

scoopyx.

scoopyx

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Re: Hello everyone - a bad sufferer. Here's my story

Post  Migrainegirl on Sat Oct 29, 2011 9:24 pm

Sorry about your troubles. Welcome to the forum. You will find a lot of company here.

I have a question. How did you find out about your cortisol levels? Was that part of a standard check by your doctor? I have not heard of that being a factor before.
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Re: Hello everyone - a bad sufferer. Here's my story

Post  scoopyx on Sat Oct 29, 2011 10:16 pm

Hello and thanks.
Well it came about because a politician here went public with his depression battle and said he had something called diurnal variation, where chemicals in his body took longer to 'get going' than other people.
He'd feel awful in the mornings and get a bit better during the day.
I said to my partner that this is what I felt like depression-wise, and she, being a highly-qualified biochemist, went digging and found out that wrongly fluctuating cortisol levels played havoc with a lot of things - including causing shocking headaches.
After running it past my doctor, she ordered a saliva test which involved taking four samples over an eight-hour period to test my levels of cortisol - and it came back that they're not right - too high when they're not supposed to be and too low when they're not supposed to be.
It indicates stress of the adrenal glands in some form.
I'm now waiting for specialist advice on treatment, and I'm hoping it will provide some answers to a whole lot of things.
Maybe others here should have their hormone levels tested?
Just a thought.

scoopyx.

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Re: Hello everyone - a bad sufferer. Here's my story

Post  Matilda on Sun Oct 30, 2011 4:51 am

I am also from Australia. I am in my thirties and I have suffered with Chronic Migriane since I was a child.
I definately have sympathy when it comes to taking anti-depressants and painkillers. It it a hard job to juggle both and to find
medications that work. I have always worked part-time and I am starting a full-time job next week. I am very nervous and scared
that I wont be able to cope.

I have never heard of a cortisol test before. I hope that you can find some answers and treatments to help.

Welcome to the Forum. It is a great place to come for information and support.


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Re: Hello everyone - a bad sufferer. Here's my story

Post  Mini on Sun Oct 30, 2011 5:24 am

Welcome to our forum, Scoopy.
I am so sorry about your high levels of suffering, many of us can associate with your feelings at one time or another, even if every one of us is fighting their own individual battles, since not two people symptoms and medicines reaction are ever the same. We all understand what havoc migraine can play with our lives.

You are so lucky to have such a supportive partner, who is also able to help in testing for the possible causes of your pain.

What you say about cortisol levels makes sense to me for variety of reasons, but mainly becasue there is an obvious connection in one sense:
one fo the most effective treatemnts for breaking up the chronic migraine pain cycle is steroid injection straight into the occipital nerve at the back of your head.
Of course steroids also act as a powerful anti-inflammatory. Inflammation plays a great part on triggering migraine (and other kinds of pain).

I have had it done ( I am in UK) three times, and found a great relief afterwards for several weeks on two occasions. The third one was not succesful, I think mainly due that it was given by a rather inexperinced Dr (I knew straight away that he chose the wrong spot, but it was too late to protest).
I also know that when at one stage I had to take corticosteroids orally for few days (for another condition), my headaches dissapeared and I felt full of energy and able to function like I use to.

I am also one of the people who finds it difficult, almost impossible, to function in the mornings. I also suffer from Fibromyalgia, so in the mornings I am often in pain all over my body (my muscles mainly) I feel stiff and clumsy. I feel awful.

Every morning I am mentally half-asleep, sluggish and unable to concentrate, it only gets better as the day goes on.
I really have to force myself to get out of bed and to do the simplest tasks, even when I am looking forward to something, it is always the same.
I am better as the day goes on.

As to testing for cortisol levels, I am sure my GP would not even hear of it (he is not very helpful) but I might askmy neurologist about it when I see him, next.

What interests me is that:
now that you know about your wrong cortisol levels what can you do about it?

Taking any additional hormons might help your head, but it has other serious health implicatons, so what is the soultion? Please let us know. All this is most interesting.
Mini (UK)
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Re: Hello everyone - a bad sufferer. Here's my story

Post  scoopyx on Sun Oct 30, 2011 9:32 pm

Hello again.
Well I'm waiting to hear from a specialist physician (through my GP) as to what treatment can be followed.
I'm willing to try almost anything, though, because it's really hard to cope with and to keep going - as everyone here would know.
I'll be sure to let you all know what happens.
Regards,

scoopyx.

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Re: Hello everyone - a bad sufferer. Here's my story

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