My life with migraines

By rilniski

2 min read

Hi all,

I thought that I'd take some time to share my story. I was diagnosed with migraines 6 years ago. I had gone to the neurologist with a headache that lasted for more than 4 days in addition to being dizzy and nauseous. I see Dr. Joseph Lubeck who is a great neurologist and we work together as a team. We tried many medications and what worked for me is the Zomig nasal spray. At first I didn't use a preventative but after experiencing several migraines a week he urged me to consider. I use amitryptaline and it helps me sleep. He did give me a rescue med which does help for the most part if I get in to a bad one.

I am totally blind and work as a teacher in a school here and had gotten FMLA as well which I get each year. I also take feverfew, magnesium, fish oil, and melatonin regularly. I also have experienced rebounds which for about 4 or 5 days this week has really plagued me so now I'm on the midral dose pack. Sometimes the pain is so great that I would just like to curl up and end it all. There are times I truly feel like people just don't care. I mean I know I have a good support system and for that I'm blessed but sometimes I feel like I can't talk about things because either they don't want to hear it or they don't know how to react and are extremely ignorant thinking that headaches are migraines. If I had just a headache, hellooooo I think I'd be working. I'm just blowing off steam. I did make it to work each day this week but truthfully I don't remember a whole lot about it.

As far as nausea goes, I use either compazine suplosatories or gas relief which is OTC. There are times when I have to cancel going to events and sometimes I swear that people really think I'm nuts. I wish there was just someone I could call to talk about this because there are times I just get so depressed and just want to give up on everything. It seems like I'm hanging in there and can be strong mentally but there are truly times that I'm faking it.

If any of you have had these expereinces I'd be glad to hear from you all and thanks for listening.

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jms32 Member
I know exactly how you feel. I go through the same thing all the time. People just do not understand what we go through and I hate that they look at us or treat us like we are crazy. I get so depressed because it keeps me from doing a lot of things. People treat you like you are lazy because they do not understand that you can't do things when you have a migraine. I no longer work because of mine.I suffer from chronic migraines. The pain is too much to deal with. I'm tired of hurting and vomiting all the time. When I stay in my room with the lights out, all I hear about is you need to get out of that room. It's not healthy to stay in there. Well, it hurts like hell when I step out in the sunlight or an type of light. The slightest noise even hurts. Migraines are a miserable thing. No one should judge "us" until they have had one. I fake my happiness a lot. It's very hard to be happy when you are suffering all the time.
1. Nancy Harris Bonk Moderator
 I'm sorry you are having such a hard time, Jodie. Chronic migraine absolutely stinks. Time for a new doctor by any chance?
shellerz85 Member
Hey there, In a way, I can relate. I haven't been chronic nearly as long as you, but in that time I've been on many types of medication. I've had two headache specialists tell me that medications will not assist me, and because of this I have been removed from all medications. I have tried a few things like feverfew, but it wasn't successful. I wanted to try Butterbur, but was too expensive for what I could afford. I don't sleep myself, and melatonin does not work, even at 15 MG. I work a full time job, which is hard to do as I deal with customer service. Thankfully its via email, so I deal with one at a time, but I do have performance I have to meet so there is stresses at work I have to deal with. People at work do not understand the pain I go through, and the fact that I wear my sunglasses on a regular basis. I live alone, but I have my Grandma and best friend who try to do their best. I understand how you feel about not being about to open up about everything to them because sometimes even they misunderstand a migraine for a headache, and then I have to correct them. I try to keep my cool, though, as they do their very best for me and my Grandma tries to go to every appointment. I pass out, I started having seizures, nausea is not fun, and I haven't had a single day where I haven't been in pain in nearly 17 months now. At times I feel like giving up, and I have attempted suicide about 6 months ago because I couldn't handle my pain anymore and just wanted to escape the constant pain. I can see where you are coming from, and I am sorry you feel like this. I think a lot of us feel this way to be honest. We feel pain on a daily basis, and there's nearly nothing we can do to escape it. The only thing I can say is don't give up. I've learned this from my little trip down suicide lane. If you wish to speak to others who also go through this for assistance, that is great, but it also may be great to speak to a professional as I have found that psychologists are able to research depression and migraines together to see their impact on us. I'm not ashamed to say I've spoke to one, and I know I need to go back again. Just don't give up. Your friends, the real friends, will understand when you have to cancel on them because you're in pain. All of us have to do this. Anymore now, I don't make a lot of plans. Today I will be seeing my best friend, but its going to her apartment (she lives in the same complex, two minutes from me) to watch movies. I can lay on her couch. She, who I've been friends 12 years with, tries to understand and knows I can't do much, has seen what happens when I try to do too much, so we just stay in anymore. Friends truly will understand if they are your friends. I know it makes you feel crappy, but you have to put yourself first. Pain takes a lot out of us. Take it one step at a time, and remember, if you ever need to talk to someone, you do have your friends, there are support groups and there are always professionals if you are okay with talking to a stranger. Never give up. We can't let this disease get us down!
1. debbyj56 Member
 To Shellerz, I'm sorry your docs have told you that! There are hundreds of meds out there to try to battle migraines. They are not just for migraines. I have had daily migraines for the last six years. And cronic migraines since I was 5yrs old. I am now 56. I go to Jefferson Headache Center in Phila, PA. They have great neuros there who are willing to help and not give up. Chronic migraine is a disease, not to be taken lightly. We suffer greatly, and yes most of the time quietly. It is a debilitating disease that robs us of our normal life. There are professionals out there that know what they are doing and care alot! Please don't give up and find someone to talk to. Take good care of yourself and God bless you!
2. Nancy Harris Bonk Moderator
 Hi Shellerz, I'm wondering if the doctors you saw were "true" migraine specialists? You see, not all neurologists are migraine specialists and not all migraine specialists are neurologists. In fact many neurologists who say they are "headache specialists" really are not. There are only 290 board certified doctors in headache medicine in the U.S. - far too few. Please don't lose hope, as Debby said there are many options and great migraine specialists out there that won't lose hope in you!
Nancy Harris Bonk Moderator
Thanks for sharing your story with us, rilniski. You are not alone and have found a great place for support and information. Rebound, now called medication overuse headache is a real problem for us. We just want the pain to go away but end up creating a new problem (moh)by taking the very pills that are supposed to make the pain go away! Here is some information on moh; <a href='https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications' target='_blank'>http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/</a>