Who expects to get better?

I just wondered. I dont accept migraines, I cant accept that they might be part of my life for the rest of it.
I expect to see improvement, I expect to be cured.
I have no idea how, but I keep searching, it keeps me going.

I tried to just live it, on the advice of people on here.
It didnt work. My stress levels increased and I was getting depressed.

I do of course accept that for now we dont have a cure, but that can happen....today!!! Eureka!!!!


I just wondered how many of us are travelling hopefully and how many are learning to live with it.

Pen

I think I'm doing both Pen. I am hoping that one day there will be a cure. But I've also lived with this disease for over half my life because I have to do that.

I think most of us are waiting and wanting a cure, but quite honestly, until there is more awareness, more money for research, etc., it's hard to think that it will happen in my lifetime. I mean, look at all the other diseases that are so much more "popular" if you will, than migraines. That has to come first as was discussed in another topic just recently.

So, in the meantime, I deal, each day, with the pain. I have a great Dr. who I respect and who respects me. I am fortunate enough to be able to have the meds I need to get through each day and that in itself is a blessing for me. I don't know what I would do if I did not have these meds or my fabulous Dr. which both afford me some quality of life.

In answer to your question - I am hoping for a cure, but more importantly, i'm living each day the best way I can with this disease and I'm not giving up, nor will I let it win!

Hugs!

Thanks for the great answer.

Sadly I have no great dr. I can honestly say no doctor has helped me, everything I have achieved (which is little) has been down to me. I would love to have a good dr who understood and supported me.

The idea of more popular diseases really pisses me off. I have said before about my friend with PD, and she gets EVERYTHING.
She feels bad for me. She has that and has made it down to see me. I have migraine and cant go see her........
I dont know how you popularise an illness, but I do know migraine is stigmatized and dismissed as minor by the majority.
That is why we are having Migraine Awareness Day here in the UK. Please if you see it on FB do tick to attend.
They made it look as if it was a physical thing. No its virtual, so all the people I sent it to on here, who said no, please go back and say attend. Thanks.

I have had migraines just since menopause. I have no family connections, I do believe that my migraines are a symptom. That's just me, but it keeps me going. Maybe if they can decide about the XMRV virus and fibro, and treat it, I might get the head sorted too. MANY Fibro people have migraines, and IBS people too. Those that improve, their heads improve too. That's why I started my page on FB.

I am living each day the best I can. But as I am virtually housebound it is not exactly a picnic.
It does get me down, but as soon as there is a break in the clouds, I go for it.

I am glad you have the meds and a positive attitude

Don't get me wrong Pen. There are days when I want to completely give up. I get so depressed and am in so much pain, but I know that I can't give in to this, so I take my meds, and go to work, and try to go on.

I don't have much of a social life though. That in itself is rather depressing. Especially after all I have been through in the last couple of years. But, that's because of how I feel on the inside, which stems from what I went through, how I was treated by him, and others. But, I also cannot give in to that either, and I work on that each day too. I know I need to get back out there, and I will, eventually, it's a long and hard process, but one that I will win.

I have found that you have to have a positive attitude. I went so long without one. And, I only hurt myself in the process. It takes lots of hard work, but you can do it. I work on it every day. Some days are better than others, believe me. But in the end, it's what I have to do to survive because I deserve to be happy again.

I'm sorry that you don't have that special Dr. I know how that feels. It took me years to find my Dr. I hope for you that one day soon, you too will find a good one that will work with and for you. It does make all the difference in the world.

I also have IBS-C. But, it only flares up when I am very stressed, which has been recently. I don't take anything for it. My IBS-C has greatly improved over the years, but not my migraines nor my chronic daily headaches. Or, I should say, yes, the migraines are not as frequent because of the cocktail of meds that I am on, but I still have chronic daily headaches, which are more manageable with my pain meds. So, I'm not sure I feel the way you do about once you get those others fixed, your head will be fixed also. Could be, but in my case, it didn't help.

I did click attend on the Migraine Awareness.

Keep your head up, and keep working on that positive attitude. You can do it. Look at all you have done with your research. It's one day at a time.

Hugs!

i know i will get better when ive gone thru the menopause( 15years time) from migraine and have learnt to stay positive and find a way of dealing with it while i have it, it took a while to accept i was getting them but now i work and work away with my neuro and have fond a great treatment. it took a long time tho and ive been under him for 8 years, there generally is no one off appt that you come out with a good treatment for your migraine. PATIENCE is the key word with finding a good treatment for migraine. i aim to be as well as i can for the sake of my family and am greateful for what health i do have. all the sensations and use of limbs i lost in the stroke i know i will not get better from and that is what is hard to accept. i do think if you get down and depressed with having migraines you can mke them worse. you DO have to stay positive.

lostinobx wrote:
I did click attend on the Migraine Awareness.
Keep your head up, and keep working on that positive attitude. You can do it. Look at all you have done with your research. It's one day at a time.Hugs!

Social life is almost non existent. I find people cant accept how quickly my situation can change.
My migraines come on in about 1 minute, no warning. Like throwing a switch.
So I try to arrange something then have to say, sorry, no can do. I get "But you were fine an hour ago" Yeah I know.....People dont get it, I'm not surprised, I dont either.

Finding a dr is different in England. You kind of get who you are given. I have had a few neuros, but its all drugs that dont work or make me worse. I guess that's all they have to offer, but some seem to do better. Those that can travel do better. I cant.

My IBS is much better than it was, I didnt get migraines when it started, but I have since the Fibro. The gut brain thing is interesting and we are still learning. I think as usual we are all different, and the cause and effect must be different.
Do you have migraines in your family? See the people that I find have gotten improvement have not had.
Their migraines have apparently been a symptom of these other things, so I view them as secondary rather than primary. I cant prove anything of course, it is all anecdotal. But also many many people, mainly women have got them sorted once their thyroids were treated properly.

Thank you for joining Migraine awareness, please pass it on to anyone you know ho is effected.

Pen

[quote]

dawn.binks wrote:i know i will get better when ive gone thru the menopause( 15years time)

Dawn how do you know this please? I mean they told me that, and I am worse than I ever was??
What do they give you to ensure this, I want it.

I dont have one offs, I have had the same neuro for 2 years.
Not much help though, actually not any help.

My own research and attitude gets me through, but some days, I do cave...

P

[quote="pen"]

dawn.binks wrote:i know i will get better when ive gone thru the menopause( 15years time)

Dawn how do you know this please? I mean they told me that, and I am worse than I ever was??
What do they give you to ensure this, I want it.



P

I'm not dawn.binks of course, but I have to say;

For those of us who haven't gone through menopause, I hang onto this idea too. It's a balloon of hope because there are a lot of women who do improve afterwards. My mother did and although she never had them as bad as I do, I'm still holding out for better days.

Angela

Pen,

In my family, I know for sure that I have two cousins that have them, they are females and both are 1st cousins. I also believe that I had an aunt that had them. She is the mother of one of my cousins and has passed. But, I'm not sure about anyone else in my family. In my immediate family, there is no one.

I thought that when I had my hysterectomy, that mine would get better, instead they got much worse. So, I am not holding out hope with them getting better with menopause. I still have my ovaries, which still produce hormones, which I have been told trigger some of my migraines. I am not on estrogen, as I do not need it.

I'm sorry that in England finding a Dr. is that much different than it is here in the States. Also, you say that the same is true with meds. If that's the case, then that really sucks. But then again, your health care system is different there than ours is, and I'm not familiar with how yours works. Although I do not currently have insurance, and I know this is a hot topic on this forum, I am not sure if I want government controlled health care. Especially, if it is going to work like it does in England. I would rather have what we have here now, the meds and the options to the number of Dr's, than to not have our meds and be able to pick or choose our Dr. But again, that's a whole other topic and discussion for another time. I just feel for you not having those options.

Again, don't feel bad. We all cave and we all get depressed. It's how we handle it that matters. It's a hard road that we all travel. And overall, I think we do a darn good job of dealing with this disease that we have been given. Not too many people could cope the way we do.

Great question Pen.

I think that deep inside I hope to "heal" or at least to feel much better (one migraine any 3 weeks would be great).

Then, more rationally, I am more realistic and just hope go abort as quickly as possible the new attack....

Pen,

I want to be better. I don't think I'll ever be cured of ever having one ever again but I'd like it to go down to a day a week. Wishful thinking at this point. I've only been dealing with the daily thing for a year (seems like an eternity though) and I decided then that I wasn't going to let this run my life. I was going to live as normal a life as possible. Some days the M wins, but some days I win. Okay the M wins more than I do, but it's not 100% taken over.

Someone posted this in a status on facebook and I thought it rather appropriate for what I deal with: "You cannot control what happens to you, but you can control your attitude toward what happens to you." I can choose to be a grump about it or I can paste a smile on (even if I feel like dog poo) and go out into the world. I'm often asked how I'm doing but I don't dwell on the downside, I try to explain my bads (and that I'm hiding from the world for everyone else's safety) and that I'm here and not doing too bad.

I do wish the medical community understood what it's like to go through this. I know there are wonderful doctors out there (mostly hiding under rocks) and that it's a matter of mining for one. Sort of like digging for gold - you find a lot of fools-gold before you find the real thing. My own experience hasn't been good with a neuro but I will probably go back and see another one eventually. I'm trying non-pharma to see what happens but if that fails, then I think I want to see a non-headache specialist neuro. I think my M might be the indicator for another inherited neurological disease that I have that only manifests right now during extreme stress and perhaps treating that disease would impact the M. Pure speculation but I'd like a neuro that actually listens to me and doesn't try to fit me into their "protocol" for treatment.

I've had these since I hit puberty and the only time in the last 37 years that they have not been chronic was between the pregnancies of my two children. That 5 year gap was the only time the migraine attacks would come once or twice a year. When I got pregnant with my daughter, my current level of hell hit me. So the last 22 years I've been chronic, either long periods of daily headaches, migraines every 2 or 3 days, or sometimes a week or more between attacks but never less that 4-5 a month. I've gone through menopause ( a bit early cause of hysterectomy at 30) and nothing has changed. I am not one of the rare lucky people that get better after menopause.

I do not expect to be cured. I've tried just about EVERY method of migraine prevention and control and have managed to get to a place where I can handle the pain and other effects. I think that eventually something will be found that will if not cure migraines, at least control the attacks better. Whether it is a symptom of another condition such as Fibro or just plain ole migraines, it is neurological in origin and there is a lot of study that needs to be done before we can even understand migraines enough to be able to figure out how to adjust a person's brain chemistry properly. Since everyone is a bit different, finding something that helps even half of us is a huge endeavor. I think I will be long gone by the time that happens. So I hold out hope that my decendants will have better treatment than me. If they happen to inherit the crap stew of genetic defects that I carry, maybe they won't have to suffer as much as I have.

There has been a HUGE difference in the way migraines are perceived since I started getting them back in the 70's but that is mostly in perception not treatment. Some of the most effective drugs we use now are the same ones they were using back then. At least now I'm not being told to stop stressing out and the freakin things will go away.

It took me a loooooong time, and I mean years and years, to accept that I have a neurological disease that has a huge effect on my life. But once I accepted that this is what it is, it was actually easier to deal with it all because I wasn't railing at the universe about how it isn't fair. Life isn't fair. Disease sucks. I fear for my future but not too much. What ever happens I try to do my best and that is ALL I can do.

we are all such complex individuals. many of us have the so-called "co-morbid" conditions, and some have just plain ol' migraine with nothing else.

my medical history is so convoluted, and i do feel that everything is connected to everything else; the unifying theory!! so when i see a brand new doctor (as i do every couple of years, just to keep on the search for that perfect, understanding one full of wisdom), i try to boil the history down to a few basics.

this can make the whole sordid story less of an overwhelming turnoff for the doc.

since i am now 70 years old, and have had these beasts in my life for 41 years, i don't expect a cure. but i HAVE HAD IMPROVEMENT. that's because i take more drugs; lol. i take almost-daily triptans, and some drug or other every single night for sleep, as i have several sleep disorders. i take no pain drugs, because they don't do diddly, and just make me throw up.

i've had my 5th (lifetime) round of allergy tests yesterday. each time there have been vastly different results. but now, i do believe, the methods have been improved, and hopefully also the shot treatments. i turned out allergic to about 20 things, none of which are totally avoidable. no wonder i'm so miserable.

allergies and sinuses are a big component of my pain, and also possible lyme disease, contracted long ago. and big-time pesticide exposure in childhood, causing MCS/multiple chemical sensitivity. and mouth/sinus malformations. and neck disc surgery. and fibromyalgia, that wonderful catch-all diagnosis "they" lay on us when all else fails. on and on and it's never simple with most of us sufferers, i think.

i always have HOPE that maybe this time, the allergy shots will work, and that will bring a big improvement. my lie has been greatly impacted by these monstrous things, but since i learned (by bitter experience) to eat no chemicalized food, and keep away from environmental chemicals at home and when out, i'm far better than i used to be.

and hey, the rest of me is pretty darn good for my advanced age. if i could only be in line for a head transplant..... i'm able to work 30 plus hours/week, and to have a life, in spite of daily pain.

i have learned to tolerate a huge amount of pain in these long years, but have never gotten to the point where i'm thankful for it, as some special folks are able to be. what i am grateful for is life itself, even though the quality sometimes sucks.

it's a huge puzzle. thankfully, we will soon get more funding and research coming our way, and just maybe, a real CURE. perhaps this little history will help someone else figure out THEIR puzzle. dianne

p.s. the picture is my 40-yr old daughter, who looks how i used to look in the good old days.

Thank you for your replies, I find it interesting, I hope everyone replies, it just shows our different situations and mind sets, with the same awful disease.

Pen

No, I don't think I'll ever be "cured". Better managed? I certainly hope so!

For those of us who haven't gone through menopause, I hang onto this idea too. It's a balloon of hope because there are a lot of women who do improve afterwards. My mother did and although she never had them as bad as I do, I'm still holding out for better days. Angela

And of course you should Angela. And probably you will.
I am disappointed because they told me I would get better post menopause. They were so sure because I never had a migraine in my life before peri menopause, and they always came with my period. I have never identified any other triggers. I feel I wasted precious time, I put stuff on hold because it was so hard to do things. But you know I thought it was bad. I had no idea how much worse it could be.

BUT. When I spoke with one of our top neuros last year, he told me I could still see improvement. Because I have no history and because they were clearly hormonal He told me, it can take 10 years for hormones to settle and that gives me 4 more years of hoping.

All I would say is, hopefully you will be one of those women who does improve post menopause. I expect you will be if your mum was. But dont miss a thing waiting. I wish I could go back to the bad days....or so I thought. I hope you have better luck,
I really do...

I hope for the best but prepare for the worst ;-)

I've had these things for 45 years (I remember getting them when I was very little, about age 4).

I was diagnosed with sinus headaches and even went as far as have septoplasty done in the hopes of reducing them. About 10 years ago, they started coming on more and more frequently. So I am now a chronic headache patient and migraineur.

I am extremely fortunate in that my doctor treats my pain. Preventatives, at best, have only worked a month or two and even then not completely.

I stopped hoping for a cure years ago. I have accepted my fate. If they get better after menopause, then all the better. Unfortunately, it seems I am extremely fertile....dumb luck. Mom didn't go through menopause until well into her 50s.

I should've bought stock in the Kotex company! lol

Don't fret, Pen. Things will get better.
£eslie

Leslie,

It took till I was 52 to get into menopause and then 2 years to get through it.
I used to have a very long cycle, 36 -40 days. I figured I probably missed quite a few that way over time,
so that's why it went on so long. I couldnt wait for my periods to stop, I knew I didnt have a chance of getting better whilst I still had them. Sadly, as I said, it just got worse. Also worse because when I had periods I knew when to avoid trying to do things.
Now I have no idea. Although oddly they are still on a sort of cycle. I get 4/6 days off Triptans,and then I get 3 days on.
They seem totally random. And I still get flashes/flushes.

I hope you have some luck Leslie

I'm hoping for a cure or at least a better treatment. Do I deep down believe it will ever happen. No, after 35 years of a minimum of 2 migraines a week every week, I think they're here for good. I'm hoping I'm wrong and they hit a break trough tomorrow.

I think the only thing I have any hope of improving is how I handle it. I can no longer be in denial. I feel, that in the case of these migraines, hope is just a form of denial. I can only change how I respond to this situation. Funny you would post this topic now. I just put the serenity prayer on my kitchen cupboard door. ...and WISOM to know the difference... I've been in denial (hope) for too many years. And am always let down. I'm not yet saying I've accepted this situation though. It's a process.. I am in the beginning stages. Thanks for post this pen. The timing could not have been better.

Unfortunately I don't think i will be cured. I hope to be able to manage but after my last year of chronic daily headache with migraines I'm beginning to be doubtful that even finding something to manage these nightmares is possible.

I try med after med and some of them a second time around hoping they'll work but no luck. I try keeping an open mind when a new med is started that maybe this is my "miracle" drug.

I'm scheduled to start my Botox treatments on the 27th of July. Just a little over a week from now. I want it to work and I'm hoping it does but deep down inside a little voice is saying it will be another failure. I keep ignoring it and am trying to keep an open mind. I guess I will see.

I am 35 and have had migraines since I was about 7 years old. So it's pretty tough to imagine not having them at this point. I never give up on trying to find ways to manage them, but beyond that all I can do is wait for some type of 'cure'. In the meantime though, I hate thinking the amount of meds I have had to take through the prime of my life and what effects they could have later.

I think it is sad, that so many of us feel this is it.
But why? There are cures for so many things that were once incurable.
Even a decent dedicated treatment would be a big help, would it not?

I just feel we must have hope despite the past and the here and now.
It only takes one day to take a difference.

I know how hard it is and even the experts do nothing but try to help us "manage" it.
No one has helped me manage it. I am no better off now than I was 10 years ago.
Nothing has worked, I live on Triptans. I pray they continue to work, even though they are hit and miss.

If we dont believe there will be a cure, then not enough of us will be proactive and those that need to will never really understand, and funding will never become available for more research.

This is how it beats us down, and it is so hard to get through day to day, let alone deal with what might be.

I just cant accept this is my life. If my family history is any indication, I have at best 15 years to go.
To be honest that is quite enough feeling like this, but I want some quality, I do want to "live while I'm alive".
So I keep searching and will probably never accept that I have to have this and apparently there is no help.

I guess if I could take the same view a lot of you do, it might be easier, but it just isn't my nature.

Thank you all for responding, I have found it interesting, uplifting and depressing all in one.
Thanks guys.

Pen

I have chronic daily headache with migraine as well. It's hell. I just wanted you to know that someone is in the same boat. I have felt very alone in this. You have my deepest empathy.

gailgigi wrote:I have chronic daily headache with migraine as well. It's hell. I just wanted you to know that someone is in the same boat. I have felt very alone in this. You have my deepest empathy.

And you mine Gail....