Discussions By Condition: I cannot get a diagnosis.

The pain doesn't stop...

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: OzKittyKat
  • October 12, 2010
  • 11:16 PM

Hi guys! I'll put it bluntly... I'm desperate - and I'm sure many of you know the feeling! :P

But first, a little background :)
- To meet me, I seem to be your average 19yo female
- I have been experiencing debilitating migraines since I was 13.
- 5-ish years ago I was diagnosed with Chronic Fatigue Syndrome.

To an extent, I have learned to live with my migraine pain and have built up a pretty good pain tolerance.
My 'normal' migraines exhibit normal migraine symptoms - no newsflash there.
However, a few weeks ago the pain changed for the worse, and it's hard to explain, but I'll try.

There's the usual continual, constant pain with peaks - but when the pain peaks, instead of my usual feeling of extreme pressure - I feel a kind of extreme constriction, like everything is being sucked inwards towards an epicentre in the middle of my head, pulling hard especially on my forehead and temple areas. As weird as it may sound, it feels like my brain is cramping. The pain is worse, much much much much worse than normal. If I was to describe the pain of my normal migraine to be a 5 out of 10, this current pain is closer to an 8 or 9 out of 10 :(

Normally I have high sensitivity to light. At the moment with this migraine pain, I can stand outside on a bright sunny day without sunglasses and it doesn't bother me in the slightest :S
I have suffered nausea, but no vomiting.
I have been experiencing cold and hot flushes, when the pain in my head is peaking, I get hot all over and break into a sweat.
I don't drink alcohol, minimal caffeine, have a pretty well structured bed time and get plenty of sleep (usually, not so much now though, stupid migraine!)

I have been to my GP multiple times in the past couple of weeks.
Blood tests - clear.
CT scan on my head - clear.
CT scan on my sinuses - clear.
I have been referred to a leading neurologist - which I can't wait for! an answer would be great :P - but that is not until November 14th, a whole month away. Just the thought of another month of suffering this pain is..... unbearable.

The medicine/s I am currently on:
Topamax
Valium
Endone
...and other than knocking me out/making me sleepy - it's not dulling the pain at all, or stopping the migraine.

In the past, I have tried:
Imigran
Sandomigraine
Voltaren
Tramedo
Panadol
Panadeine/Panadeine Forte
...in varying doses, for little success in prevention/pain management :(


So basically, I'm mainly looking for some/any tips on things I may be able to try to manage this pain, although any ideas as to what 'it' is would be aces.


Thanks for reading and any help, ideas and contributions will be greatly appreciated! :)


OzKittyKat

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2 Replies:

  • Hi guys! I'll put it bluntly... I'm desperate - and I'm sure many of you know the feeling! :PBut first, a little background :)- To meet me, I seem to be your average 19yo female- I have been experiencing debilitating migraines since I was 13.- 5-ish years ago I was diagnosed with Chronic Fatigue Syndrome. To an extent, I have learned to live with my migraine pain and have built up a pretty good pain tolerance.My 'normal' migraines exhibit normal migraine symptoms - no newsflash there.However, a few weeks ago the pain changed for the worse, and it's hard to explain, but I'll try.There's the usual continual, constant pain with peaks - but when the pain peaks, instead of my usual feeling of extreme pressure - I feel a kind of extreme constriction, like everything is being sucked inwards towards an epicentre in the middle of my head, pulling hard especially on my forehead and temple areas. As weird as it may sound, it feels like my brain is cramping. The pain is worse, much much much much worse than normal. If I was to describe the pain of my normal migraine to be a 5 out of 10, this current pain is closer to an 8 or 9 out of 10 :(Normally I have high sensitivity to light. At the moment with this migraine pain, I can stand outside on a bright sunny day without sunglasses and it doesn't bother me in the slightest :SI have suffered nausea, but no vomiting.I have been experiencing cold and hot flushes, when the pain in my head is peaking, I get hot all over and break into a sweat.I don't drink alcohol, minimal caffeine, have a pretty well structured bed time and get plenty of sleep (usually, not so much now though, stupid migraine!)I have been to my GP multiple times in the past couple of weeks.Blood tests - clear.CT scan on my head - clear.CT scan on my sinuses - clear.I have been referred to a leading neurologist - which I can't wait for! an answer would be great :P - but that is not until November 14th, a whole month away. Just the thought of another month of suffering this pain is..... unbearable.The medicine/s I am currently on:TopamaxValiumEndone...and other than knocking me out/making me sleepy - it's not dulling the pain at all, or stopping the migraine.In the past, I have tried:ImigranSandomigraineVoltarenTramedoPanadolPanadeine/Panadeine Forte...in varying doses, for little success in prevention/pain management :(So basically, I'm mainly looking for some/any tips on things I may be able to try to manage this pain, although any ideas as to what 'it' is would be aces.Thanks for reading and any help, ideas and contributions will be greatly appreciated! :)OzKittyKatI'm not sure if you've tried any Triptans, but they are great at relieving the pain, nausea and sensitivity to light and sound that are associated with migraines. Ergotamine is cheaper, but less effective. Of course beta blockers are the first line treatment though.Also, The "gold standard" for Migraine and headache diagnoses is the International Headache Society's Internation Classification of Headache Disorders, 2nd Edition (ICHD-II). If you can, classify the type of migraines you experience. It will be easier for everyone to offer advice.Hope you feel better.
    keanhe 86 Replies
    • October 13, 2010
    • 00:14 AM
    • 0
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  • I'm not sure if you've tried any Triptans, but they are great at relieving the pain, nausea and sensitivity to light and sound that are associated with migraines. Ergotamine is cheaper, but less effective. Of course beta blockers are the first line treatment though.Also, The "gold standard" for Migraine and headache diagnoses is the International Headache Society's Internation Classification of Headache Disorders, 2nd Edition (ICHD-II). If you can, classify the type of migraines you experience. It will be easier for everyone to offer advice.Hope you feel better.Thanks for the reply and concern :)Triptans:After a quick google search, I don't recognise any of these as having been prescribed to me before. The pain relief part sounds gold. Although, currently, I am experiencing no sensitivity to light or sound - just the constant head pain with peaks I can most closely describe as 'icepick' from the ICHD link.After perusing the ICDH site and the types of migraine section, I have attempted to narrow it down:- Paroxysmal Hemicrania - http://www.healthcentral.com/migraine/types-of-headaches-271536-5.html - according to the characteristics and diagnostic criteria on that page it seems to fit. My boyfriend has noticed very minimal ipsilateral eyelid oedema and ipsilateral forehead and facial sweating when the pain is peaking, but barely noticing those seems to be clutching at straws to try and 'fit' into a self diagnosis.. - Cluster headaches - http://www.healthcentral.com/migraine/types-of-headaches-38362-5_2.html - however I've experienced no bloodshot eye, no excretion of tears, no reduced pupil size and no blocked/runny nose. Lying down worsens the pain, the harshest pain comes on quickly similar to an 'ice pick', lasts for 30 seconds, dies down a little bit, but is constantly extremely painful until the next sharp peak. The migraine pain never stops though (the page I've read suggests cluster headache peak pain lasts for 2 hours) and remains that 8 to 9 out of 10 rating I gave in my first post. And I am definitely not restless or active (http://www.healthcentral.com/encyclopedia/408/32.html).Nothing seems to fit exactly, but the way they are described in those articles seem to be the best I can do..Applying cold to the areas doesn't help. Neither does applying heat.
    OzKittyKat 1 Replies
    • October 13, 2010
    • 10:50 AM
    • 0
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