Migraine

Teri, Nancy, and moderators thank you so much for everything that you do for all of us. I owe a lot of the good hours/days I have had for the information you provide. My understanding of my health, how to help myself, and what questions to ask my doctor have grown immensely because of this site.

I was wondering if it would be possible to establish a little more of an area for HMers to communicate and discuss issues. I love this forum and the support that everyone gives each other. I am however painfully aware how rare HM is and finding someone with HM to talk to is like finding a gold mine.

I always believed that I was perfectly sane, even though doctors sure didn't give me that reassurance for years. The day I discovered what HM was on this site was the day I knew that I was sick, not crazy.

Everytime I read about someone else's horrible experiences with this very real rare neurological disease I have never had more clarity to knowing that other people have lived with my nightmare.

Even here on this forum there are many people probably will never relate to what HM is and how hard it makes daily life for us when we suffer an attack. Don't get me wrong, the tea room is and warm, inviting, and full of sympathetic and great people. But I personally don't relate to them most of the time.

People who are holding down two jobs, or putting in full days doing things, are a world a way from being concerned if you might have the strength to get out of bed, maybe load the dishwasher, take a shower today and calling it quits before you crawl back in bed for the next ten hours.

Thanks once again for all you do and for considering my idea.

You're very welcome, and thank you for your comments and suggestion.

Let's think about this. Even if we do make a separate folder for HM, we'd stil want discussions of medications to go in the medications and treatments folder; discussions about doctors to go in that folder, discussions of triggers to go in that folder. Those topics overlap from one type of Migraine to another. Given that, do you still think it worthwhile to have a separate folder?

Thanks!

Teri,

How bout just a meet and chat for HMers? Have you seen how many there are in the few threads in member intros lately? I know about a year ago a bunch of HMers were checking with each other after someone started a support thread.

Meds, Questions and doctors do overlap and definitely belong with the rest of the forum, but some of the crazy symptoms we have as every day occurances are definitely outside of the norm of other people's experience. There are times when people ask does this happen and everyone else is like no never, whereas it is common and very normal for HMers.

I also think by having this separate place we can, reach out to more people, who might specifically be looking for something related to HM and whether they are all alone. I know that when people do post something about HM it might be quite awhile before it comes to others attention.

This might be like the Healthy lifestyle support folder, or the Complementary/Alternative therapies with a very defined purpose. Maybe I am the only one interested in this but would it be possible to poll others?

Thanks for the consideration.

Mary in NM

OK. Later today I'll set it up, and we'll give it a try.

Hey there-

I hope that you guys do get this folder and find tons of support in it. I just wanted to add, although we may not understand HM or deal with as much as you do with your migraines, we do still understand how debilitating it can be to live with migraines. I couldn't image how hard HMs are, but I do know what it is like to question if I can even crawl out of bed and face another day.

I have been debilitated by my pain, I went about 2 years hardly functioning at all. But I learned that i had to "deal" with my pain and provide for myself, otherwise I would be out on the streets, no healthcare, no home, nothing. So I do work, but just because I work, that doesn't mean that I can't understand or relate to you.

I hope you find the support are looking for, but just know that we understand, too. Like I said, we may all be in different situations, but we are also here for you! I hope things get better for you, too!

quote:

Originally posted by mlhrail:

People who are holding down two jobs, or putting in full days doing things, are a world a way from being concerned if you might have the strength to get out of bed, maybe load the dishwasher, take a shower today and calling it quits before you crawl back in bed for the next ten hours.

Wow! I had this same thought today after reading up on the messages from folks with HM on the Member Introductions board.

I'm not into divisive boards, and I'm not advocating one now, but I do agree that my search for HM information has been helped significantly over the past week because I happened to log onto the board at a time when a few people with HM have introduced themselves.

I have felt so much better reading others' posts and knowing that I am not imagining my bizarre symptoms, and am not just plain daft! It has been much easier this week to catch up on HMers and their experiences. It's helped me get through another weird set of symptoms, and gave me the reassurance to go back to my GP about things that are real.

I totally agree that all of us with migraine disease can empathise with, and learn from each other whatever our 'type' of migraine. It really helps reading about everyone's experience of migraine, drugs, coping strategies, and treatment, even if the type of migraine I have differs from the poster's.

Having a signpost to HM, or Basilar, or MAV just helps me to get where I want to quickly when my head and body won't play fairly. I'm on the verge of a med change, and having a folder dedicated to that has been a great help this week too.

Thanks for your support,

Mog

OK, folks, the hemiplegic Migraine folder is ready and open. Please remember to put discussions about meds, doctors, triggers, etc. in those folders.

Thanks!

Thanks so much, Teri! I can't even express to you how much it has helped these past few weeks just being able to connect with a few other people around the the world who experience HMs.

I know some of our experiences are similar to other migrainers, but some are completely different and unique to HMers, and it has been such a relief to find out that I am not alone in experiencing many of the weird & scary things I have experienced with these very rare migraines.

I will make sure to use the other folders as well, but I do appreciate having this HM folder to chat with other HMers. I think a lot of us with HM have been made to feel very alone/isolated with our disease, so it is quite wonderful to not feel that way anymore. Thanks again.

--Jaclyn

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quote:

Originally posted by Alexandra "Morpheus":
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