Horrible rebound episode left me changed inside

I just emerged from a month of hell of getting off of Codeine and Ibuprophin after having migraines and headaches all day, everyday for over a month. Finally I had to crash and burn and I was pretty sick there for a while as anyone that has had to withdraw could attest to. I don't even know if I am off completely, but I do know that I've finally had two days in a row, where I'm realtively migraine free and feeling halfway alive. How did I get to this point in my life?

During the healing, I've had to go through guilt and self abashment, and denial, and confusion, and anger, and pity, and surrender, and fight and back to guilt and all over again. I was smart and stupid and reached out and smacked back and I am emotionally spent. I've had to face the pain without the mask like I did before triptans were invented.

I'm okay now and wouldn't wish that on anyone. But from this emergence, I don't want to talk to outsiders anymore. While I was dealing with this much pain, I couldn't hide it like I used to, and I was defenseless at the barrage of advise shoved in my face. Accupuncture, accupuncture, accupunture!!!!. It would help you know!!! I told you codeine was bad! That stuff will kill you! Maybe it's the weather? The weather, the weather. You should go on a vacation. What are you eating, oranges, bananas, milk, I heard milk!, cheese, bread, stay away from gluten of any kind, red meats, anything red, like wine, or cranberries, msg in facecreams, mediation, have you tried it, you should you know, you used to, why don't you now? coffee, drink more, drink less, take an aspirin, only aspirin works, do you poop regular, maybe that is it. You sleep too much, that can work against you. You don't look so good, you should wear make up sometime.

(side note: I'm not totally surounded by idiots, my core people leave me alone and respect that I have a disease that is not my fault and let me heal as I need to)

Then, subsequently, I sit and I watch a news program and I see someone who has had a surgery that has changed their life and healed their affliction, and I am jealous. Or I sit next to someone who has minor pain and goes on and on about it like they have MS or something.

Before this episode in my life, I wanted to educate the world about migraines. Now I just want to be left alone. Nobody wants to understand anything outside of themselves anyways. How can they learn anything if they won't shut up long enough to hear what I'm saying anyways.

I understand everything you posted. I have seen or heard most of it. I am not the person I was before M. The old me was okay.

I hope you get relief soon.

I am full of admiration for what you have achieved, Enigma.

The price paid for such experience is high, but extreme suffering takes us into another universe and when we return, we are never the same afterwards.

You are also right - in the end we are quite alone since nobody can possibly understand how it is living with this condition, how it affects us in million different ways.

I recently met someone and I was interested to hear that he also suffers from migraine, so I thought great, he knows all about it.
But he only gets them about once a month, and does not get all he predrome etc and migaine which can drag for days, so even he was looking at me strangely when I talked about it how it makes me feel disorientated and half mad at times.
We are all alone when we are in pain - no on can be of help.

I am so glad that all this is behind you and that you have already some improvement.

You did a very brave thing, just make sure that some doctor does not make you start taking something that will take you back where you started.

I'm glad to hear you are doing better now. Thank goodness.

I know what you mean about not wanting to educate people anymore. I just want to hide away from everyone.

Enigma - Been there, gone through that!

The problem is most people don't have true migraines; they have bad headaches and think they are migraines. I've heard the same things you did and even heard thru the "grapevine" someone said I should just "get over it".

I know people try to help and are well meaning, but they really don't know what they're talking about.

I watched an episode of the Dr. Oz show because the was doing a segment on Migraines. The advise was so simplistic and basic; a complete waste of time. And that's what happens when you dispense generic advise on a complex problem like migraines and CDH. But people pick up on that stuff an spread it around like it's the latest breakthrough in medicine.

Salt free, sugar free, gluten free, dairy free, MSG free, florescent light free, oxygen free; I've heard them all (and tried a few too).

My favorite is the Excedrin Migraine commercial: People who know migraines, know pain. True, but your product ain't going to help me!

Ditto. I don't bring it up to people anymore. I don't have time to recite a litany of 30 years of treatment. If someone asks for advice I tell them to seek a neuro and find a good online support group.

I am bad in that I jealously guard this forum from friends and acquaintances and never mention this one by name. I want to be able to be completely open without anyone recognizing me. If a staff member or client were on here, knowing I was on here, they would recognize me in a heartbeat.

I like being able to share my innermost thoughts.

Yes I can really relate to this. I was doing volunteer work for a charity till they realised why I was availble to help and started making kind comments. I havn't been for 3 weeks since. I can't hide that I feel unwell and get the helpful ideas all the time, and of course the idiots. I havn't posted for a while because I have felt so changed I havn't known how to cope with it, or indeed who I am anymore.

aw yes, dr. oz. he seems to make everything so dramatic. except for the show on migraine. that he simplified. no wonder the average person does not understand migraine. or cdh.

God, I love this post!!!!!!!!!!! I mean I am sorry for what you had to go through, are going through, but this is like gospel! It totally hits the nail on the head for what life is, has been, probably will be, like for me. I knew you folks on this site were in the same boat I was in, but I THINK THESE THOUGHTS! With the same amount of disdain, disgust, irritation, or whatever towards the folks offering me "suggestions". I do have to admit though, that I have had several friends come to me and ask advice about their migraines. You kno the ones they have four times a year. I have nothing to tell them. I have no idea what causes it because I can't figure out what causes it everyday! Anyways four times a year, to me isn't that huge. I do like to offer ideas to people who have them everyday and their quality of life is diminished. Hey if something I have tried can help you, although it didn't for me, then run with it! Literally! Get out and do that 5k if you can. Thanks for this post though! In an odd way it lifted my spirits. I know now that I am not the only one surrounded by well-meaning idiots! ( and I don't mean my immediate family!)

wow....just read through everything. You know what irriates me? My Nan tells me to just wake up in the morning and say "no more migraine" and says I should just get on with it. She means well, cares about me and hates seeing me go through this and as she doesn't know what to do, so tells me to just to forget about them. How the hell am I supposed to forget about them? She then says I should go to America for some treatment like America has something else to offer Australia doesn't!!!!!! You know going through this would make me appreciate only 4 migraines a year. That would be nice. Somewhat of a cure in my opinion. Those ad's that say paracetamol will cure your migraine just make me laugh. Who came up with that idea?

I'm sick of the up and down, not knowing. I've become very recluse. I go to work and see how long I can last, have treatment, attempt some gym classes to stretch things out a bit and that's pretty much it. I have no energy to do anything else. I go up and down through the depression but even when I don't have a migraine I don't feel like doing anything. I'm not always depressed but I just can't be bothered, I'd rather just stay at home.