Thank you Terri for your share post, my husband, who is generally one of the most supportive people I know has been "waffling" a bit because I am one who is affected by humidity and the fluctuation of barometric pressure and we get a lot of both here in South Carolina, it's nice to know that I am not going out of my mind, he has been with me on previous visits with my neurologist before he moved away but the last couple of months have been h*** because of the weather. I have made an appointment to talk to my General Practitioner, and have printed out the list of medications that is on the site, marking what I have already tried so maybe we will be able to find some thing that works and maybe I will find the joy that is scarce in my life now.
Well, for me this was a problem, and I do get aggravated with those people who lets face it, "will never really know" what we go through. I've told my husband that he can't fix me. When he says something, like, "maybe you are watching too much tv,and it's hurting your eyes." I first didn't say much, but then got angry. I said, first off, I'm not always watching the tv, just because it's on. (I think it makes me feel like I'm not so alone). Besides, I told him, what else can I do. I'd love to read, but I can't do that. Then the doctors keep telling me to exercise. Like I sit around lazy. I push myself to get out and walk when my head is not hurting. I even take extra strolls around the store like Walmart, just to get some exercise. So, it burns me up when people assume I'm not doing anything. I don't feel like giving up, it just depresses me somewhat and upsets me. I don't give up on finding a regimen for me because, I know that's like letting this disease beat me, and I will not do that! I've come a long way, and I still have much more living to do, so I make the best of my life, and I just found another "specialist", and hope this is the one. Keep your fingers crossed for me! We just have to realize, as I told my mother(who is my great support) that people out there have no clue until they walk in our shoes. By having this disease, I am more kind to people, because we don't know what people go through.
Denise
Teri,
I was thinking this before, but it came to me the other day. Why can't someone, or some people get together and make a commercial about this disease. Many people don't look at migraine as a disease. It's not taken serious like all these other things you see on TV. Is there anyway to make this happen? I'm sure you have thought of this, and have probably even tried some way. There needs to be more media on the "true, and actual" affects from Migraine disease. This is not just headaches, and take tylenol. What works for one, may not work for another, so get support and help, (like this forum). I know many people feel like giving up and commiting suicide with this pain. That's crazy when you think about it, but until I started getting them really bad, I really thought of that too. Not that I'd seriously follow through with it. But my mind was just getting depressed and I still cry sometimes because these migraines come on, and the pain is so intense, and it seems like "no one", but God himself knows my pain. So is there a way to get some doctors to talk about this in truth? Thanks. Sorry, so long, I get carried away.
Denise
Hi Teri,
Great post. I wondered when I saw it if you caught my anger on facebook..?
The person in question who made me angry is someone who is not ever going to change. Unfortunately I must work with her many times during the week. When she told me I needed to "think myself well", I was coming in to work after a night at the ER for severe aura symptoms. I was slurring my speech, I was dizzy and walked as if I had a few too many drinks, and my vision went wrong. After the ER visit, we couldn't get back into our home because the police had our neighborhood blockaded due to gunshots. Eventually we got back home around 5AM.
I was angry because it is not her place to say what I need to do or not to do; she is arrogant and believes she's always right. She thinks that she can bully people around and does so on a regular basis. Frankly, I do not even understand why she is still around if we make her so angry all of the time. She is also a hypocrite, someone who can't stand not getting attention when she doesn't feel well and who takes her anger out on everyone when no one wants to stay to cover her shift for any number of random reasons. She likes to interject her own opinion into everything even when topics don't include her. She's a toxic person, and eventually she's going to push someone too far (I'm getting there, personally), so her comment was like a slap to the face. I've been working with this problem now for 4 years and it's grinding me down. She doesn't know what it's like because she thinks she has all the answers, nevermind the fact she ignores her own advice and complains about everything constantly. If ever there were a Negative Nancy, she's it.
I managed to get through to one of my managers shortly before he trasferred to a different store. That was a victory hard won. I just rolled my eyes at this other gal; I was too tired to say anything to her about the night I'd had. She simply doesn't have a clue, and yes, I was so angry I just saw red. I think my anger at people sometimes drives my will to get through to them. Maybe I shouldn't have let her comment get to me, but I'd just had a heck of a night after coming back from a weekend of stomach illness and I was tired of the world and all the people in it. I've been struggling with depression more than ever; I don't want to get out of bed, I don't want to shower, I don't want to work. All I want to do is sit in front of the TV and the one thing I look most forward to is crawling back into bed at the end of the night. So "thinking myself well" pushed me over the edge.
Right now I have no positivity in my life. My husband is struggling with this just as much as I am. My mother feels like she's failed me after pushing and pushing to get answers about my PFO closure, only to find out the device took its sweet time sealing and in the meantime, nothing has changed for me except I've gotten worse.
I'm not going to give up the fight for migraine understanding and recognition, ever, but I'm struggling right now, and I know so many more of us are struggling too. I think I just put into words on facebook what many people think at any given time when confronted with someone like that.
Thank you, Teri!
We've all been dealing with family, "friends," and coworkers for what seems like forever, trying to explain our disease. Too many of us feel like we've been handed a jeweler's hammer & told to knock a hole in the Great Wall of China.
I don't know if it's the weather (which has been surprisingly mild in my little part of the world lately), world politics, or interstellar weather, but a lot of us do seem to be in trouble right now with hitting rough patches that those around us just don't understand.
I have no answers. Just prayers and good wishes for all of us, and a soft shoulder and a listening ear. And a thankful heart for friends who do "get it," even if I'll never get to meet most of them face-to-face.
My extended family does not understand Migraine, but I do not let that get me down. I have a very understanding husband and I find that is all I need to keep me going. You have to be your own advocate really, and help yourself first. You can't rely on other people to fix your problem, afterall it is your problem. But it does help to have the people in your life be empathetic. Also, you need to keep up on the research for your doctor too. Sometimes the doctors aren't always up to date. And isn't that the case with any medical condition?
I have suffered from migranes since I was a child. People who don't have migranes simply cannot wrap their brains around the pain.
In my living room I have 2 large picture windows (I know...what was I thinking) I have dark heavy curtains which stay closed the majority of the time. But every now & then one of them get "opened" and when I ask my husband or anyone to shake the curtain down they tend to get irrated...but the sun bounching off passing cars etc will trigger a migrane.
I do not go outdoors without sunglasses.....
I think to myself...if "they" had a migrane just one time.....they'd understand why I do not want a migrane attack.....the eye phobia,, the pain,, the nausea are very real!
This is a wonderful.....and unfortunately timely subject for me. My husband does not get it at all. I have showed, and watched him read the letters from the site, still nothing. I don't know what to do when the person that I love and am married to doesn't support me in this terrible battle that I fight, sometimes daily. I have HM, he has seen the attacks and still nothing. He believes that because I take all kinds of pills that I should be doing better. I am at a loss of what to do now. I go back to school in a month (I am a teacher) and am not sure how I will handle working everyday again. I have no support system and feel alone with my 4 kids to raise the best I can.
Thanks for listening 
I am in your position. I am married 20 years and have battled this disease since 15. My husband doesn't get it nor mother-in-law. My middle son does cause , he gets them too. I feel very alone and isolated at times and the pain is so bad I just want to go to the er. I have gone two times in my life and they treat me as if I am a hypocondreac.. So I don't go and just suffer in bed for 12-24 hours. I get it and you are not alone...
Wow, I know your pain. I thought I had it bad because my husband thinks I should be able to "stop doing this to myself" because "I can't handle any stress" or "I don't listen to my body and overwork myself," but I must say he does pitch in and pick up the slack. At the same time the anger he feels is still there. It sounds like you are dealing with much the same attitude.
I too am a teacher and worry about going back to work. We have a new principal this year and I will have to eventually clue her in to my condition. Hopefully your principal will be as understanding as my last one. THere have been many times over the years when I had to get a sub in the middle of the day when a headache came on suddenly. Luckily our sub system is filled with people who want to work but coming up with sub plans when you are doubled over and dizzy from pain and vomiting is no easy task!
I know first hand being a wife, mother, and teacher is a crazy amount to handle. Oh, and did I mention care to aging parents? I often feel that I don't do any of these things their full attention as I am spread so thin. THis is something I know I am not alone in. If you add disease and non-understanding loved ones in this mix well... you get the picture.
Keep posting and stay strong. This website has really helped me in the short time I have been here
I voted that the attitude of those around me impact my will A great deal. My toxic relationship motivates me to do what I can to try to get ahead of this disease so I can take full control of my life.
Finding the right preventatives may be taking much longer then I have planned or want it to, but it is my goal and I will attain it because I have to. My other plans are contingent on it and I cannot give up since I have too much riding on it. I have been doing a lot of journaling which has helped greatly. It also helps knowing I am not alone and that you all are here and have been here in my time of greatest need.
Thank you.
I am about at my wits end. I have a migraine nearly every day. Because of this, I have to take my Relpax every day. I know that this causes rebound headaches; however, if I don't take it I am in excruciating pain. I am taking so called preventive medication, but that is not working. Can someone please tell me what I can do to stop these migraines?
my local doctor who has known me now for 4 yrs has just decided that i am an addicted to the meds that i take? i don't get it i have been the same doctor the same issues and tryin g everything under the sun to see what will work and what wont.
I have exhausted just about all my options but yet again at a pain management clinic to see what can be done, and today my doctor announces to me that she no longer believes me or in me and no longer wishes to treat me?????????
I can take those who dont know me being scepticle but my own doctor is a bitter pill to swallow. I KNOW that she is under pressure from the other partners in the practice to shed the DIFFICULT cases but i never imagined this would happen.
I feel very lost at the moment and very betrayed, my family are great but the one person that i have to rely on has let me down to a degree i can not fathom.
There is so much to say but in a nutshell I suppose...
I have had migraines all my life (I am now 47)
I have also now had several strokes.
Luckily my husband believes me but often people relate it to "stress" etc.
It took a migraine specialist long ago to convince me that it was NOT "in my head" (bc others, even unknowing drs, didn't know)
My daughter has inherited the tendency also. It is terrible to just be glad she ate anything because I have been so sick myself..all the while wondering if she will get a bad headaches or migraine and I can't even help her let alone myself.
At least I believe her. I hope that helps somehow.
When I was a child no one believed me.
Even now, I explain that when people are in pain don't automatically assume they are looking for attention. Assume they are really in pain and need support.
I have found with the migraines and with the strokes people are "done" and want it to be over. When you have to live like this you lose a lot of people when you need them the most.
I have found that saying that "you should hang around positive people" can be really damaging when the people who really need you and your support are so often the people who are sad, in pain, etc...
Thank God I have a very understanding husband and great children, one of which who suffered from migraine until she moved to Las Vegas. I am very happy to have found this site but cannot type all the time because of a nerve distruction in my left arm from a procedure I had trying to get rid of what my dr called atypical facial pain and he hit the nerve root. So now I have both.
many of us just deal with our migraines and dont share the pain with others anyway, so we dont have to worry about support vs no support. It can be the hidden disease that we struggle through and we have this "giving up the battle" attitude not due to the people around us but because nothing has worked and we are tired of the continuous struggles with migraine pain
Great post, Teri! I have a very supportive husband and mother. Most of the rest of my family try really hard to understand and are at least sypmathetic. What hurts me, is when my husband lets it all get to him (which he has every right to do - as this impacts his life greatly) - but sometimes he just gets short with me and aggravated. I guess that is not that bad, seeing as much as he loves me and does for me. It just hurts when he gets like this. My sister, who ironically suffers from chronic neck pain, seems to be the least understanding in my family. If I have to cancel plans, she gets mad, although she hardly ever does anything with the family. It's like when she does, if I don't, I am horrible. My mom tries to get me to think positively, and tries to motivate me, which I am thankful for! Right now, as bad as my migraines have been for so long, my depression is pretty bad. So, I need all the motivation and support I can get.
I don't know what I would do if I were married to someone who did not get it at all, like some of the earlier posters. I don't understand how someone that married you, for better or worse, can treat you that way? I pray for all of us on a regular basis. Maybe one day soon, the medical community will come up with answers to treat all of us and get everyone on a good preventative regiment!
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I always thought my DH "got it". It took a while for my mom to "get it" and I'm still working on my MIL.
I had my husband come with me to every "first appointment", and there were many. I knw he knows that I suffer, but I also have a problem of trying to hide it. I think the only people that I really let know how bad I feel, are other Migraineurs because I know they know exactly what I am talking about.
Recently, I found the Spoon Theory. At first my husband was like "that's not you" but he had only skimmed through it while at work. When I got home later that night, I asked him if he read it, he had not yet, but did so at that point. He knew it was important to me, and I think that the Spoon Theory pretty much says everything that someone with an illness or disease goes through. I just hide how I feel a lot of the time, or make it seem as if it's not as bad as it really is.
I sent it to my mom as well. She seems to understand a bit better now, but that also came with reading Teri's book.
The good thing about someone who has read the Spoon Theory - is now all I have to say to my husband is that "I'm really low on spoons today" without getting into how gross I really feel, which I have difficulties doing in the first place.
After DH read the Spoon Theory he came to me and said, "I don't know what to say, I really had no idea". I think there are probably more of you like me who try and hide how sick you feel all the time and just push through. I think that the Spoon Theory helps get it all out and says what we maybe can't always say.