Hi, My name is Suzi. I have lived with chronic intractable migraine for over 40 years. Have tried just about every thing in the book (that I know of) I stumbled across this group in hope to try to get some mental help with the day to days of loving with pain by knowing that I am not alone on my quest to an end to the pain.
Not sure If I have posted this in the right area (I am a bit of a dinosaur when it comes to forums) as I have never used one before.
Recently I have also developed Hemiplegic migraines and they are taking their toll on me. I would love to hear from anyone that can relate/comprehend the levels of pain and the hurdles that need to be overcome living with such conditions.
Hoping all are doing the best they can do on a daily basis
Hi Suzi,
Welcome to the CPA Forum..
And don't worry too much about posting here. If you look up top of the general discussions category, you will see an introductory thread, but really it's no big deal. When I first got started in forums back in I think late 2000, I didn't have a clue and felt like a right fool sometimes when I made some silly mistakes.
Well, you don't have to feel a fool here, because that is not what this place is about.
We are here for you and for each other. This is just an open public forum where anyone can come in and have a chat about their pain condition, or maybe talk about someone they are caring for.
As for you and your migraines. We do have some here who suffer bad migraines. Luckily for me, I don't suffer migraines per se. I do however suffer migraine type headaches, which is due to the damage in my neck. And currently I have a trapped C4 nerve root which causes me constant acute type pain up the left side of my neck into my head. So, searing headaches, nausea, light sensitivity and noise sensitivity are often bed fellows with me. I am often in my room with all the blinds and door shut, lying in bed with a pillow over my head, just trying to get my head to ease up on the bloody pain for a bit. I can't tolerate anymore medication/drugs, so I have to lie down each afternoon for around an hour, just to try an reduce the pain in my head.
My headaches come from my neck and I can actually get some wonderful relief with an icepack. I just go to bed at night with an ice pack under my neck, which freezes my neck where all the pain is and I go off to sleep like that. Most times I have a fairly good night sleep with this method. But of course it can all be back the next day though. So I don't over do the ice pack method, so that I can always benefit from it when it all gets too much for me.
But I don't know how I could cope with what you go through or indeed others who suffer proper migraines. That would be utterly terrible. It's like CRPS, which is another horrible type of chronic pain. Both of them are very, very difficult to treat and from what I hear, they are very difficult to suffer too.
So you have much sympathy and empathy from me Suzi. But I just can't help you with any ideas on how to make life easier for you.
However, I can offer you lots of support and the knowledge that you are now part of this family. We have a very large membership, but only a few who post. Most people are content with just reading and not posting.
So if you feel the need to talk, you go right ahead. Slide into any thread you like to join a conversation and share your wisdom.
Here's a thread that was started a couple of months ago by another member that you might like to read and then post into: https://www.chronicpainaustralia.org.au/index.php/forum/general-discussions/13062-migraine-sufferers?limitstart=0
Anyway, I hope you find some peace in this place. As I said, we aren't a very busy forum, but there will always be someone around to say G'Day to.
Take care,
Peter
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
Peter, I often read your replies to forum members, and they are always so supportive and helpful. I just want to say how much I admire you and the other Administrators on this site. Dealing with pain is so hard and quite exhausting, yet you all find the time and energy to run this very valuable resource. I sometimes come here just to find the motivation to keep going, and I very much appreciate being able to do so.
Lindajane, thank you so much for your very kind comments. It is comments like yours that make all this worth it. We get nothing material out of this. But we get a huge amount of good feelings from knowing we are at least helping some people some of the time.
There is nothing worse than suffering this modern day form of a contagious disease, where you are totally isolated from family and society and often you are shunned. We all look so damn good on the outside, but feel like we are dying on the inside.
Just to have someone to talk to who understands and who can validate your experiences, is the greatest act of charity we can give each other. And believe me, I get as much support from this place as everyone else does.
And I am so glad that you find this place a good source of motivation too. Just as your message here has motivated me (and I'm sure Don and Mary) to keep plugging away.
It is just so worth it!
Thank you again.
Peter
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
