Last June I had a migraine that lasted 11 days. I've had migraines since I was a small child. I present with auras, visual disturbances, metallic taste in my mouth, I start to slur my words. This happens anything from 7 days to 5 minutes before the migraine starts. I'll have an episode like once every 12-18 months. The rest of the time, I get migraines that last 2-3 days, at least once every 6 weeks. They've become part of my life, I accept them and work around and through them. I also suffer with chronic pain in my neck after an injury at work 24 years ago, this aggravates the migraines also.
But every now and then I get one so bad, I need medical attention and in the past when I've gone to the hospital, meningitis has been suspected due to my aversion to light and touch and I've had numerous lumbar punctures. I did have viral meningitis in 2000.
This time I decided to go to my GP, I had visual field tests and an MRI. There's a tiny lesion on my right temple but this is probably scarring from the migraines and not the cause. I also have a cough and experiencing shooting pains and numbness in my thigh bone and around my hip joint. I am tired all the time, not sleepy, not lack of motivation, just tired.
The Doctor ran routine bloods.
A week later and now in the UK, she messages me to say I need to get a repeat test carried out. The white blood cell count, platelets and neutrophils indicate at the very least I have an infection of some sort. The count is slightly decreased and then my father died. My health was put on hold.
I return briefly to Dubai, still coughing and saw a pulmonologist. I'm a smoker, the cough is bothering him. I'm diagnosed with pneumonia, given antibiotics and an inhaler. I was hospitalised for pneumonia in 2007. I return to the UK for 2 weeks.
My blood cell count increases, so back to the GP, more tests, an MRI of my hips and thigh. There is nothing there, a chest CT, change in antibiotics. We move house.
I'm referred to an oncologist. My body isn't absorbing iron, this is corrected, yet still my white blood cells and platelets remain high. She suggests the coughing may be due to a silent reflux and recommends I take a one a day tablet. The coughing eases.
I have a bone marrow biopsy. I wait 2 weeks for the results. I know the oncologist just wants to rule cancer and bone marrow disease out, she says it may pick up the very early stages of a problem that she can deal with. I spend 2 weeks stressing out. I can't help but think the worse. I'm still having more frequent migraines, stopped taking the preventative medication that was prescribed by the neurologist last June, it's not working. The biopsy was one of the most uncomfortable things I've ever had done in my life and 3 weeks on the site is still quite sore, doesn't help I keep banging it.
So I got my results last Tuesday, no cancer, no bone marrow disease, no known cause. Repeat bloods are taken, count still high, body still not absorbing iron so lifestyle changes to diet are put in place, another migraine, medication doesn't work and still having pains in my hip and thigh bone. I'm still tired, even after 8 hours sleep.
I been googling my symptoms, it seems I'm stressed. No wonder with all this going on and my father dying last year. But all this started before he died and still doesn't explain the high white blood cell and platelet count.
I'm back in the UK next week for the summer, I'll be monitoring my levels of tiredness, the bone pain and migraines. I've stopped drinking coffee and reduced my intake of wheat products and dairy as these are the 3 things that can prevent your body from absorbing iron. Other than that I am at a loss as to what to do. I'm glad its not cancer or a bone marrow disease, but it leaves me in the same position I was in last year, I'm just not well and no one knows why.
Have you heard of complicated himiplegic migraine? My partner gets this. Extreme migraines and a lot more weird symptoms.ReplyDelete
I hope you get some results soon as to what's causing your problems, there's nothing worse than not knowing what it is.
I've not heard of that, basically now the bone marrow is sorted they're start to look at the migraines againDelete
Glad you've had good news that it's not cancer. It's amazing that with all the technology and tests they can do, there are still illnesses that aren't diagnosed. My brother doesn't have migraines, but he's had nearly 5 years of what took 2 years to be diagnosed as Chronic fatigue syndrome, then a year ago, serious Vit D deficiency, but even though they've sorted the latter, he still has ongoing pains and is convinced it's actually lupus. He's debating going to the states to have further tests that the UK don't do. He reckons the not knowing the cause is the worst part because you have no way to control it. #triumphanttalesReplyDelete
sorry to hear about your brother, i had to have my Fit D levels amended, it's just too hot out in Dubai to spend a lot of time in the sunDelete
That is good news that it's not cancer or bone marrow disease....ReplyDelete
After everything that you and your family has been through the stress won't be helping.
I hope you get to the bottom of it soon and start to feel better! #PoCoLo
Thank you KimDelete
I am so glad it is not cancer, but I am sorry you are suffering so much. As one with migraines, chronic nerve pain in my neck and back, I feel for your and am sending gentle hugs through the internet. Don't give up! Find your answers. Feel better, and keep us posted. I've done botox injections for the migraines with some great success. I take medical marijauna for my chronic pain and that works, mostly. I also have a spinal chord/occipital stimulator. Oy, I wish you easy solutions! xoxo #triumphanttales xoxoReplyDelete
sorry to hear you're struggling too. i had botox for chronic neck/nerve pain, it worked short term, but was so painful I'll never have it done againDelete
Glad they're starting to rule out things, and hope you get a diagnosis soon (or relatively) Take care and thanks for sharing with #PoCoLoReplyDelete
thank you Stephanie. It's good they're ruling stuff out, but in the meantime I'm not getting any treatment/support for the migraines which is frustratingDelete
Oh gosh this must be really stressful, but glad haven't got cancer, I hope you get it resolced. Mirgraines suck and as I got I suffer with them once a month during my perioid X #pocoloReplyDelete
sorry to hear you suffer with migraines also, they're not nice are they?Delete
What an awful few months you have had. I'm sorry to hear you have been so unwell. My Mum has had bone marrow biopsies and so I know how painful they are from what she has said. I sympathise with the migraines too, I get them once a month without fail - hormone related. But they're not as bad as the ones you suffer from. I hope you get an answer soon. Thanks for sharing with #TriumphantTales.ReplyDelete
Thank you JakiDelete
Oh gosh Suzanne that sounds awful. I suffer with migraines occasionally and know it sucks. Hope they work out what the problem is soon. xxxReplyDelete
Thanks for linking to #pocolo
thank you, i'm in the uk now for 3 months, i'm not sure i'll get any help over hereDelete