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Hey everyone :) (Read 2527 times)
Lilibuth12
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Hey everyone :)
Apr 20th, 2018 at 7:20pm
 
Hey Smiley, I have been diagnosed with migraines for years (since early teens) full aura etc. experience.

Then last year I came back from a party and collapsed on the floor screaming in pain, threw up and found myself in A&E then admitted and put on some pretty serious pain killers (which took the edge off the pain at least...). Very bad photophobia and days in bed in a lot of pain ensued; finally it all just disappeared with a combination of Sumatriptan and acupuncture. I just thought it was an epically bad migraine.

So that was March last year. April this year and BOOM. Not quite A&E level this time (thank god) I just thought it was a bad migraine that wouldn't go away. Got a new doctor, as the old one retired, and she wrote me off work with cluster headaches.

It's taken me about a week to come around to the idea but it all fits, which is both awesome and freaking awful... So hey, now 2 weeks into an attack and feeling pretty damn sorry for myself but hoping I can learn some stuff to help on here. Anyway nice to meet you all!
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MDR
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Re: Hey everyone :)
Reply #1 - Apr 20th, 2018 at 7:41pm
 
Welcome aboard

Read Read Read and ask ?

Mark.
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Hoppy
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Re: Hey everyone :)
Reply #2 - Apr 21st, 2018 at 12:33am
 
Migraine headaches are known to morph into CH's, but it's always wise to check in with a headache specialist for a proper diagnosis.

Cheers Hoppy
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Mike NZ
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Re: Hey everyone :)
Reply #3 - Apr 21st, 2018 at 12:45am
 
Hi and welcome Lilibuth

I'm guessing that you're in the UK from the reference to A&E, so a great place to get local CH info is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register who can help you navigate the NHS and all the fun that can bring. Plus they have a phone helpline too.

A&E (ER to those in the US) isn't the best place to get a headache diagnosis as they are normally pretty hectic and primarily focused on getting people patched up rather than diagnosing neurological issues. So what you are best doing is seeing your GP and getting a referral to a headache specialist as most GPs, even many neurologists lack the skills and experience to diagnose complex headache types, especially when you've already got migraines which can make diagnosing additional headache types more complex.

It's perfectly possible to have 2+ headache types (I get CH and migraines).

What does seem odd is your reference to "...days in bed...". It is typical of CH that the very last thing you want to do is to be still but instead want to pace, rock or some other motion. This is more aligned with migraine, but you could have both active at the same time, which explains the very severe pain.

But get an expert to confirm the exact diagnosis(s) and we can be great at helping you with info, advice and even a place to vent as we all have gone through the horrible headaches that need explaining.

Keep us updated and ask questions.
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Lilibuth12
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Re: Hey everyone :)
Reply #4 - Apr 21st, 2018 at 8:01pm
 
Thanks for the replies everyone Smiley

I am arranging to see a specialist soon as I agree, I need to get this all diagnosed properly. I personally don't care what I have either way as long as I can find a way to manage it, my life is currently on hold and I just want to work out what is going on so I can work out how to deal with it and how to manage the pain. I am currently pretty scared to even leave the house incase it appears.

Mike NZ wrote on Apr 21st, 2018 at 12:45am:
Hi
What does seem odd is your reference to "...days in bed...". It is typical of CH that the very last thing you want to do is to be still but instead want to pace, rock or some other motion. This is more aligned with migraine, but you could have both active at the same time, which explains the very severe pain.


Yer days in bed is mainly because I get extremely photophobic and staying in the bedroom allows me to control the light. I dunno I am very restless and move around alot on the bed rocking, hitting my head etc. but not walking around. Read a study where it said a reasonable proportion of people have the same reaction, however I am just learning about this stuff now so who knows.

Oh and regarding the migraines I don't think it has morphed from one to the other, I still have classic migraines regularly throughout the year but I have them under control so it is not affecting my life to nearly the same level. It also doesn't hurt as much... I mainly get really bad auras with migraines which I am not getting right now.

Anyway it's great to just get to discuss this with other people to be honest as no one else I know has any idea about them/has even heard of them so thanks again for the replies.
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Batch
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Re: Hey everyone :)
Reply #5 - Apr 21st, 2018 at 10:01pm
 
Hey Lilibuth,

Consider yourself a member of a very elite group of headache sufferers who've been diagnosed with both cluster headache and migraines.

When you look at the probability, the odds are very low.  However, when you look at the fact that both CHers and Migraineurs are vitmain D3 deficient...  the odds go up...

The first step in solving your problem is to see your PCP or neurologist for a lab test of your serum 25(OH)D, a.k.a., your vitamin D3 status.

The odds are very high you're vitamin D3 deficient or at least vitamin D3 insufficient.  Be sure to ask for this lab test.  The results could very well help you avoid the terrible pain and burden of both these headache disorders.  I've sent you a PM with related information.  Please keep us posted.

Take care,

V/R, Batch
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« Last Edit: Apr 21st, 2018 at 10:15pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Mike NZ
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Re: Hey everyone :)
Reply #6 - Apr 22nd, 2018 at 12:05am
 
Great that you totally understand the importance of getting a diagnosis as a key step, which then opens up the right treatments to go forward to limit how many you get and for any that get through so you can kill them off.

That fear of what might happen is something that is all so easy to relate too. But this is changed once you have effective abortives and even if one strikes with bad timing, you can deal with it. Before D3 got on top of my CH I always, wherever possible, had a backpack with me with my CH supplies and I got used to planning where I could escape to when I needed to use it. In it I had a small O2 cylinder, regulator, mask and Red Bull. I'd spot when something was starting, leave the room, grab it, deal with it and get back 5 min later.

I just made sure people knew what was happening if I did that, so I didn't have to try to explain everything when that was the last thing I wanted to be doing at the time.

The comment about photophobia can apply to both CH and migraine, plus other headache types.

You could have both and people can have both active at the same time and they can differentiate which symptom is due to which (which amazes neurologists).

Roll on getting to see someone soon.
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