Who expects to get better?

Hi All,

This is a very interesting question.

I have been dealing with chronic intractable migraines/ New Daily Persistent Headache for twelve years now- since age 17, now 29.

I do not know if they will get better. I hope for a cure and I hope it comes for all of us. However, until that time, I can only do my best to live in spite of this disease, which has taken a great deal of my life. I can only try to live with it. I know that means living with medications, occaisional invasive surgery to repair the stimulator that keeps the pain down, and IVs of Depakan when it gets out of control. I do have friends. I do have you. and I do have my family. All things to be grateful for.

I certainly wish, hope, and pray for a cure. One day, perhaps it will come.

Do I expect to get better- I hope so.

Now, if I could get the fainting under control, I would be much better.

Pain free days,
sailingm

I don't expect to get better any more. My last visit with the neuro convinced me of that, when the newer doc to the practice put me on oxycodone (although it is ineffective). He sort of called that his last ditch effort to control the pain (imagine his shock when I waltz in there next month telling him it didn't work).

But you know what? Today, in this moment, right now, I'm ok with this being enough. I'm mobile. I have two healthy kids, a healthy husband, two living parents, and a roof over my head, and I know where my next meal is coming from (either the freezer or the delivery service of a restaurant). I have a frozen bean-bag/ice pack and some pain meds, along with the support of my family. It's summer vacation so our outings are minimal. The big move from house to house is behind me, now it's all just the settling in part.

Yes, I'm still in pain and yes, that part is still yucky. Yes, I still have issues with the high intracranial pressure in my head and the shunt that goes along with it, and how much of that is my problem is yet unknown. Once the shunt is out (maybe December?) we will know for sure how much is plain old migraine.

Menopause - Just turned 40 but had a hysterectomy at age 35 or so. No hormone therapy any more, so I've already gone through psuedo menopause I guess.

But for today, I'm ok with how my care is being managed (or mismanaged - ha ha). I know my neuro staff is doing their personal best.

thansk lynelle for such a positive post, it ws lovely to read how you are concentrating on all the good things in your life instead of the pain! and wih an attitude like that you will continue to get better, hope we all follow in your footprints!

Thanks Gail. I haven't met anyone yet that has chronic daily headache along with migraines until I found this site. I empathize with you too.

Nice one Lynelle glad you have found a positive place to be. I was there once, but menopause and ageing changed it.
I admire the way you are handling this, hope it continues to work for you.

Pen

Right now I don't expect to ever get better. I'm braced for enduring these tings for the rest of my life. A gloomy attitude I'll agree, but right now I'm pretty frustrated with the same ol' same ol' every doctor around here uses for treatment of chronic daily headaches and migraines.

Triptans, triptans and more triptans...

I cherish every good moment and place my hope that the good ones will outweigh the tough ones someday.

I can't allow myself to give up the hope that I will one day get better. I'd be in a very dark place if I did.

Yes jwar, the days that I let myself go "there" are my darkest days. That's why I try so hard not to go there and try to maintain hope.

jwar wrote:I can't allow myself to give up the hope that I will one day get better. I'd be in a very dark place if I did.

Thats me too Jayme. And I do slip into that place sometimes when I have a bad run.
BUT I climb back out somehow, and I have to have hope.

P

I'm glad to see people still have hope but I'm past it. I've had migraines for 40 years and that's just since they were diagnosed, pretty much had headaches all my life. I've tried everything and nothing worked so I've given up hope. I live on barbituates and the heck with the MOH. I went off them for about 2 months with no change so I don't care I just want to get through the day. And Phenergen for the throwing up.

That doesn't mean I've stopped trying. It just means that I used to imagine what it will be like when I don't have them any more and I don't really think about it any more. I just assume I'll always be like this.

I live my life around the headaches and often it doesn't seem worth living but it's all I've got. It's so hard to watch others go out and live their lives and you all know what I'm talking about. No one understands except the people on here so I'm really glad to have this forum to turn to. I have been going to a fibro/chronic fatigue center and was getting some help but just had a setback again. I have a lot of really bizarre health problems I'm dealing with and it's takes all I have.

Currently, I'm headed for an MRI as part of starting with a pain management doc who is an anesthesiologist and does the spinal injections. Several people I've met had great results. Who knows. Just hang in there, everyone.

For those of you waiting for menopause -- don't count on it. 1 in 3 people do not get any relief at that time. That is a lot of people. Mine got worse. I do live with the thought that mine will some day be gone. I couldn't stand it otherwise (and I don't even suffer that much because my abortives work most of the time). I don't know how some of you do it. Pain is not a "normal" part of life and should not be accepted.

I was thinking that maybe I'll just have like 10 children. They say migraines go away during pregnancy, right? 9 months, no headaches??? Too good to even imagine!

Maybe I'll just keep getting pregnant and then give them up for adoption when I have too many to handle. Added bonus: I get to have way bigger boobs like all the time with this plan. Win-win!

LOL!! Well as far as migraines going away with pregnancy, don't count on it. When I had my son, they went reduced to about 1-2 a year for 5 years. Woohoo!... Then I got pregnant with my daughter. I didn't have morning sickness, I had migraines. Every freaking day for the first 4 months, a bit of a break for 3 months and then every freaking day for the last 2 months.. and chronic ever since.

I don't regret it a bit but man .... hormones are brutal little buggers.. I just wish that whatever happened with the first pregnancy had lasted.

For me, I`m hoping that one day they will ease up but I know that it can go either way so I`m not counting on anything right now. My mothers went away as she got older and went through menopause. My dad had them when he was a kid. None as an adult.

Been a long while since I visited here and I can't figure out why. It's definitely the deepest consolation I have ever had to speak with others that know what we go through. Something about migraines, nobody understand them unless you've had them with great frequency and severity. But I had to reply to this topic if for nothing else then to say I know the feeling discussed here, even more so when I spend too long away from people that can relate.

I think in some ways I was thinking I was getting better. I discovered that the levels of caffeine intake in my diet ended up being a severe trigger, in addition to being the only thing that worked to relieve a severe attack enough for me to sleep and get past it. So I spent about a month cutting it from my diet and trying other pain relievers. The good news was the lack of caffeine reduced the frequency of migraines a lot (to maybe 2-4 per week instead of every day), but I still couldn't find anything without caffeine that worked when one still came on. I've tried using fiorinal (with caffeine) in limited doses to strike a balance, but so far it hasn't worked. I will reliably get a severe rebound migraine within 12 hours of any caffeine intake, almost like some sort of allergy.

Now for some reason I have a persistent numb, tingling in my left arm that won't go away no matter what I do, like my arm fell asleep and never got full circulation back. I've heard it's one of many symptoms of migraines that I just haven't experienced yet. I thought I've had em all, then something new creeps up that I never heard of. My doctor is at the point that he makes visible effort to stay positive, like telling me how there are always more medicines to try, "plenty out there", yet he takes a couple minutes to think of what else we can try every time I go in...

So I don't know... I try to stay positive, but this is one hell of a disability that isn't letting me get back on my feet again physically or financially because I've been unable to work reliably, or get further experience or college to have a real career yet. I'm still at an age where I should be laying that foundation down for the rest of my life, but how does that even work with migraines every couple days? One of my good friends tells me he doesn't think I will ever be completely rid of it just from seeing how often I get them and how many possible triggers there are, but like someone else said, the only thing that keeps me positive is the hope that I can get back to a normal life. Depression and stress takes over every time I've tried to just accept it. It's no way to live to have migraines constantly interrupting our social and professional lives.

Sorry to be kind of a downer though. I just needed to vent and really appreciate you all sharing your thoughts... I need to remember how much it helps and keep coming back here to visit.