New to the site - dealing with a lot

Hi,
I am new here. I've had migraines for 23 years (had my first when I was 11) and chronic for 6 years. Early this year, I came off of Topamax for a number of reasons, but mostly to get pregnant. I had a very stressful job and was going through a really rough time at work. Without Topamax, my migraines started escalating, coming much more often and crazy painful. It got so bad I was missing at least a day every two weeks and was completely drugged when I did go into the office.
I stopped working at the end of October and applied for disability insurance (a benefit I pay for through my employer). After six unpaid weeks, I was declined and told to come back to work, full time, the following day. In addition, my organization had decided that my performance wasn't up to standard and denied my bonus. For so many reasons, this was an extremely poor decision because I worked my butt off this year and delivered great results. But I honestly believe they saw me as disabled and a liability and bonus is discretionary and there's nothing I can do (per the lawyer I paid way too much for a consultation with).
So Thursday, I resigned and walked away. I have been thinking about this for a while, it wasn't a spur of the moment decision and it feels right. At the same time, I am struggling because I haven't just decided to resign from my role, I have decided to walk away from my career. I need less stress and more balance. Since I stopped working, I started getting better. I have as many good days as not and the migraines are not nearly as painful.
What's troubling me is acceptance. I know what I need to do - I need to understand that I have a disability that creates limits that I have to respect. I can't be a high-power executive and live a (relatively) normal life. I have to reach for less professionally, and look for more satisfaction at home through my family and things I enjoy. I need to be gentle and good to my body and love myself the way I am. But as easy as it is to write this, it is really tough to come to terms with.
It feels really strange.
I found this forum by accident, surfing for information on migraines and stress. I love how candid everyone is in the discussions (seeing open references to marijuana shocked and delighted me) and that's very much me so I thought I'd join and say hello.
Feddy

Hello Freddy -

It seems a little more quiet than usual on here. I guess everyone is getting ready for the holidays. Welcome to the group.

You've come to a place we all have to come to when we realize our quality of life is not going to return to what it once was, or even be what it could have been. Even though it's hard, accepting it makes it easier. But don't ever stop looking for what might work for you. I have never found it, but some have so maybe you'll be one of them. Keep working with your doctor for prevention and pain management.

Good luck - Cathy

"I need to be gentle and good to my body and love myself the way I am"
Yes, definitely very wise words.
I am still very sad for you that, like so many of us, you find yourself in this situation when we realise that our lives become permanently affected and limited by this condition.

Personally I know exactly how you feel, becasue I also had to give up a very rewarding career prematurely for the reason of my deteriorating health. It felt almost like loosing one's identity. It is very hard.

When this happens there is a great feeling of loss, a kind of grieving for the that person that we meant to be and this condition prevented us from achieveing this.

I sense that you are wise and sensible but having loving family you will be all right. I am sure that you will find other ways to express yourself and find fulfillment.
I wish you good luck. And stay with us, tell us how you are doing.
Mini UK

Hi Cathy and Mini,

Thank you for your kindness and support. Grieving is the best way to describe what I'm feeling, Mini you said it perfectly. It's very difficult to walk away but I'm trying to look at it as an opportunity to redefine myself. Knowing that there are other people like me who have made these difficult choices helps.

Thank you both for reaching out.

Feddy

Hi Feddy,
Wow. Reading your post was like looking in the mirror. So much of what you said is also happening to me.

My migraines started 2 years ago. I too had a very hard-core job as a software test engineer. I ran a test lab with 21 people in it and designed all the inspection/test procedures. It was incredibly stressful and no matter how hard I worked, I just got pounded with more and more. The drugs I was taking for migraine relief were making me psychotic. I was not a nice person and I ended up in HR during an "intervention" where I was told I had a bad attitude. I have had headaches and migraine pain every day for about 3 months and was throwing-up in the bathroom several times a week. This had become "normal" for me.

At the end of October I was going through a particularly bad migraine that landed me in ER. My fiance finally said "that's enough" and called my boss to tell him I would not be returning to work anytime soon. I'm currently on disability but my doctor's office and the insurance company have not been able to get their act together and I have not yet received a disability check. Managing these 2 parties is like having a full time job. Lots of boneheads to deal with.

Currently I'm waiting for Botox treatments. I'm going to stay on disability until my company fires me. I won't give them the satisfaction of a resignation. They knew damn well how sick I was and how much stress they put me under and they did nothing to help me. In fact, they gave me more work to do. Screw them.

I agree that this is very difficult to accept. I feel like I'm breaking up with a boyfriend. The sense of loss, grief, shame, guilt, etc., is a little overwhelming. I struggle with depression.

So, give yourself a break.
We're sick.
It's not our fault and we're not doing this on purpose to get out of work.
We are not lazy, stupid slackers.
We have a disease.

Surround yourself with good people who understand what you are going through. Now is the time to lean on them and ask for help.
Look at this as a new opportunity to make a life change. Think how great it's going to feel to work at a job with less stress and less BS.

I know it's hard to walk away from a good salary and benefits.
But your health and well-being are more important.

thanks for sharing your story. I know I'm not alone and there are other migraineurs who are going through the same feeling as myself.

When you walk away from the benefits , as some of you might need to, please keep your Cobra. Trying to get insurance with a pre-existing condition is hell. For the most part impossible, or at the least unbelievably expensive if you can even get it. That might improve somewhat next year when Obamacare takes effect. But it will still likely be more xpensive than Cobra under your current group plan. We ant aford to be without medical insurance with our condition.

Hi,

Welcome to the forum! Sorry that you are going through so much. However, it looks like you are taking some very positive steps and they have helped the headaches. That is wonderful.

Yes, accepting the limitations of this horrible disease isn't easy. I got my first migraine at age 12, but they became chronic at age 17, now 32. I managed to graduate high school and get a BA in English and hoped to pursue a career in ordained ministry (but the school felt the headaches made me a detriment.) I then pursued a Masters in Education, but had to stop the program due to a fainting disorder four years ago. I still faint a great deal.

The combination of fainting and headaches made me realize that I might not be able to do things I wanted to do. I had to accept the situation. I have found that tutoring is a good way to stay in the education field and deal with the headaches. Maybe you will find something similar?

Anyway, the path to acceptance isn't easy. But we are here if you need us.

Pain free days,
sailingm

Freddy,
Good job to reach out! It is imperative that you surround yourself with people that may be able to help out some! Please, don't let migraines control your life to the point that your dreams dissipate. Have you ever done some things to find your triggers and what makes his condition worse for you? That really helped me have a good starting point. I would encourage you to focus energy on how you are going to win this battle, because you can and will!
Do you know if there are any migraine centers or specialists in your area? What type of remedies are you searching for? Ie: eastern or western medicine

Feddy,

I can relate to what you're going through. My migraines are constant and chronically severe. I can't work or do much of anything due to the migraines. Over the years, my migraines have gone from intermittent to constant.

I'm glad that stopping work and lessening the stress has helped your migraines. I used to work really hard and then get terrible migraines that would last for months.

Finally my migraines became so chronic that I had to quit working. I hoped that maybe once I had less stress in my life my migraines would get better, but mine only got worse. I was okay for the first year or so after I stopped working, but then the migraines came back full force. I've been to countless headache specialists and tried countless medications but have yet to find anything that works for me. Now I'm on pain management.

Migraines have robbed me of ever having a normal life. Hopefully you will have better luck than I ever did.

Best Wishes,
Brenda

I'm so sorry, I have been away for a bit and am overwhelmed by the number of responses and similar stories. WOW. Thank you so much for sharing with me and reinforcing that I am NOT alone. As much as I wouldn't wish this on anyone, knowing that I can find a place like this, where I am surrounded with kindness, compassion and support from people just like me blows my mind. I have been searching for this site for a long time.

I am doing much better. I went from a migraine that pretty much didn't let up for 6 months to roughly 60/40. But the severity of the pain is the most amazing part because has reduced itself so substantially with this time off. I have also accepted that I left my career. I saw my old team for dinner a few nights ago and they looked so stressed, unhappy and tired and it was like the final nail in the coffin for me. I KNEW I did the right thing. My job was making me much sicker than I need to be.

That said, I am going back to work just changing careers. I am opting for a much less stressful lifestyle with guaranteed hours and nothing to take home at night. I have a verbal offer and start in January. Hopefully with all of this time off, I will be stronger and able to maintain a bit of stamina again.

Migrainegirl, I am Canadian so I already have obamacare lol. My husband also has a great benefits package so anything not covered by OHIP (my provincial insurance) is covered through him. I know how lucky we are as Canadians with our medical benefits. Even botox is widely available; my migraine doctor has it on hand at all times (although I haven't tried it).

I am so grateful to you all for sharing yourselves with me. Your insight and your strength are inspiring and I will pull from that when I need to.

Merry Christmas and Happy Holidays!

Feddy,

Welcome...I'm relatively new here and have found that everyone here is so understanding and helpful. Not many people understand what it's like to give up what we do to try to live a "normal" life.

In October, I resigned from my job as well to stay home with my 2 year old son & give Topamax every opportunity to work. I'm SLOWLY noticing a reduction in frequency and intensity, but with many side effects.

I wish the best for you & you've stumbled upon a great community!

Tara

Hi, I'm new here

I've had to give up my career because of migraines and chronic pain a few years back.
I then retrained so that I can work freelance from home.
It's made a huge difference for me.

It doesn't always work 100%, but most of the time I can work around my migraines.
It is so lovely to be able to function again, to produce great work results and to have a network of great colleagues and customers.

I went through a major grieving process when I first quit my old job and studies and went on disability.
I'm currently considering applying for 50% disability. I don't know if you have this in the US too, but here where I live (in Europe) it's possible to work part time hours and to be on disability for the other 50%.
Again, I find myself going through a similar grieving process.

In my mind, I know it's the sensible thing to do, so that I will be happy and well and can continue to successfully work freelance part time, for many years to come.
But in my heart, I am grieving again, that I will be stuck with a label again, in some sense, and that I may have to face that I won't work full time for the near forseeable future.

I'm probably going to put in my application for this at the end of March or the beginning of April, so I have some time to mull over it yet and hopefully move forward a bit in terms of grieving over it.

I'm glad to have found this forum!

SR

P.S. Lepoppet, I think I read a really cool article by you on Migraine.com the other day... It really impressed me!!

Hi I'm new here, I just found this site by accident. i'm sorry to hear about your story but it sounds like all our stories are similar. I'm so happy that I am not alone I have felt so lonely with my medical disability. I even think most doctors dont understand the pain and damage migraines can cause. I have a great insurance and a great job that allows me time to go to my appointments n what not but the problem is that i work with the doctors that treat me! I am an excellent, fast, punctual get the job done, stay for over time kind of employee and was respected and due to migraines i becamed known as a "drug seeker" due to the pain from my migraines. My pain has gotten so bad that a few times i have contemplated suicide, life is not worth living in so much pain but i fear GOD that it wont come to that!! I have been off work since may of 2012 i am on disability! I get to return to my job within the year if my doctors can get my migraines under control. Im currently on topomax 200 mg but im stuck on stupid so i take adderall which helps a bit, they just added nortriptyline n i take amerge when migraine hits. I have done botox n acupuncture! I have a neuro in sunset n woodlandhills n bakersfield ca! I had a full hysterectomy last january 2012 migraines got worse!

Angela

Hi Angela, I'm so sorry to hear about everything you've gone through. I think you're right, most of us have similar stories and struggle with the same issues. I hope that you find a way to reduce your pain and get some relief. I understand all too well that search for 'something'. I've done many things but I think the most important one was therapy. Just talking about it to someone helps and sometimes that also reduces my pain. It helps me keep my mind clear and that's important for me.

I also wanted to post an update. So many people have read this post (I am stunned!) and I thought it might be interesting to share what I'm like four weeks later.

I am doing better. I don't think that my migraines are any better, but I am dealing with them differently. Right after I quit my job, the migraine stopped completely. Almost no pain, just mild headaches sometimes. Then the cycles started again and I've had a migraine for almost three weeks. What's really changed is that I'm not stressing about it anymore. No one is judging me. I only have to do what I can. I am (starting to) ask for help. I am letting my husband take care of me (this is a big deal for me...I really like to be self-sufficient and independent).

That said, I am also trying to go back to work. We (me and hubby) need the extra income and also, I am terribly lonely during the day and need to be with people. I have a final interview to manage a retail store on Thursday. Keep your fingers crossed for me! I really enjoy socializing, I'm good at managing people and it's a very small store which will mean limited stress. Working retail also means that I can sleep a little bit later in the morning (stores don't open until 10 where I live) which is something my body responds well too. I have always done best when I stay up a bit later and sleep in a bit more.

I am also scared to death. What if I get into a really bad migraine cycle and I can't work through it? I imagine calling in sick when you're opening or closing a store is just not an option. What if I'm flagged for having an attendance problem? These are definite possibilities. But I figure the worst thing that can happen is I get fired or quit. That would suck but I would be okay.

That's pretty much it. Celebrating 9 years with my husband tomorrow. Life is not perfect, far from it but quitting my job was the best decision I've made in a very, very, very long time.

xoxo Feddy

Hi freddy, thanks for the update! I'm so glad I found this site and I'm not alone. I think sometimes I'm gonna lose it!

I wish u all the luck with the job! I'm like u I need to be around people, I am so depressed being at home, luckily my position at my job is held for a year, I have been on disability thank GOD for that cuz I'm a single mom. My year will be up in May so I need to figure out a way to suck up the pain n work with it or their is no option 2.

I saw my fam practice md on tuesday and she prescribed me hormone patch so hopefully that will help, I have been getting a lot of hot flashes due to my complete hysterectomy so hopefully that will help! Again good luck

Angela