People just don't get it.

By Teresa Tuesday, April 20, 2010

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So- I had one of the worst migraines ever today. My husband tells me I just need to get out of the house and also mentioned how he would trade his knee pain for my head pain. Are you serious??? Do people just NOT GET what a migraine is?

I cried until I thought I would puke. I hit my head on the wall hoping that would help ease the pain. I had an irrational thought in the midst of the horrific pain and had to call my best friend.

When I say I'd rather give natural child birth over again than go through another migraine, I am dead serious! The front of my head was throbbing, the back of my head felt like it was in a vice grip along with the left side of my neck. My vision went blurry, my hearing kept going in and out and on top of that I thought I would barf my brains out and had to take my phenegran. (Hard to vomit when you can't eat due to the pain.)

You would think after 26 years of marriage my husband would have some idea of my suffering. A clue at least.? Yeah... I'll take his KNEE pain any day of the week but I wonder if he's really ready to take the pain of my migraine that can sometimes make you feel like the only way out is with a trigger?

I am so frustrated and drained that I can't even think clearly. I'm trying to pull myself together for an interview this evening at 6. Hopefully the make up will cover the puffy eyes and I hope I can camouflage my pain with a fake smile. I don't like to take medicine and only take it when I have too. Today, it did NOTHING....The muscle relaxer did not work, the phenegran didn't work like it usually does, and even my oxygen therapy was a waste of time. How do I get people to understand that I DONT feel like getting out the house or trading pain and comparing. I am so frustrated that I could literally scream right now IF it weren't for the pain in my brain.

For Teri

Comments (17) | Add comment

mcmurraychick

4/20/10 6:20pm

today i had yet another monster. and wound up at the doctors office pulling my hair out.... literally.

doctor took one look at me and went and got the shots himself... not waiting for the nurse. and gave them a few minutes to work before he came in to talk with me.

i'm counting the days until the nerve block ( may 19) and praying it helps.

it's been another sucky week.... filled with stress, and of course another mirgaine............ and i had been doing so well with the new meds. doctor says to wait and see, they will help, but it takes time for my body to adjust! i can only hope/

Teresa

4/21/10 10:00am

I wish you luck with your new meds. I certainly hope they work for you. Sometimes they do take time. My migraine finally broke this morning but man o man is my head ever so sore from yesterday. I call it "left overs".

Things got much worse before they got better and I certainly don't want to go through another one of these again any time soon but the sad thing is, I will... next month... they are hormonal and I can't get these brutal attacks under control.

What are you taking for yours? I'm thinking about asking my neuro if he will put me back on Topamax.

Take care,

Teresa

califmom2

4/20/10 7:33pm

I feel your pain. Literally. I have had migs since I can remember; they are hereditary and (fortunately) people in my family get them so WE "get it." Now, my husband, after about 20 years, finally got it when he took me to the ER at 2 in the morning and really SAW me suffering because I couldn't take it anymore. For 20 years, I had hidden away in the dark bedroom and bathroom, throwing up alone, under the covers alone, suffering alone. So he never really saw the agony, he just saw my white face and exhaustion the day after. I'm not a complainer, so he never heard much about it. But after the ER trip, he's been much more sympathetic.

He has bad knees too and after he lost 25 pounds, the pain went away. But he NEVER compared his knee pain to my mig pain. And I know he was in bad pain. So maybe you can talk to your DH when you are in a good place about what your needs are and what your dr. says. Maybe you can direct him to this site or others about migs and help him understand what kind of pain this is--not just a headache.

Remember, there are many of us out here listening. We hear you and we really do understand. Stay strong, girlfriend.

Teresa

4/21/10 10:14am

Yes, they are hereditary in my family as well. My daughter was diagnosed with them at 3.

My husband has seen me throwing up, crying, pulling my hair, banging my head on the wall and while I think he has sympathy for me, he still just doesn't get what's causing that pain or how pain could be that bad in your head. He is pleasant and understanding however, I wish he had a clue of the pain. "

You just need to get out of the house"??? ha! Okay and while I'm out of the house maybe I can have my picture taken with the flash going off/ without my sunglasses while smoking a cigarette and drinking an pint of Jim Beam. Nothing a migraine would love more, right? LOL ugh!!! He doesn't call them migraines either..... he calls them headaches.

Oh well.... it is what it is... He is sweet and just a man who doesn't know the morbid pain in my brain is all. He's never had a headache much less a migraine so unless you've been there, I guess it really is hard for most people to understand the degree of the pain.

Things got much worse last night before they got better. I made it through my interview but when I got done I felt really sick at my stomach and my head was still hurting. (He did drive me to my interview because I didn't feel like driving.) We went to eat and as soon as I got home it all came back up and my head was hurting "still". I took my phenegran and went to bed. I slept very good last night and this morning my entire head is just sore. It took a beating yesterday that's for sure.

Thanks for the postings ladies. I hope you are having a migraine free day and all is well.
God Bless you and let's continue to support each other.

Hugs! Teresa

RICH

4/22/10 12:05am

Teresa, i am afraid that spouses just don't get it. At least mine does not have the slightest clue of what's going on especially if i don't complain. I recently was running out of oxycontin which i use in conjunction with 300 mg of Topomax and other drugs and had to cut my dose in half for a few days leading up to an appointment. This tuned into three days of extreme pain, agony 10+ and at one point my wife said "do you still have a headache."

Katinthecorner

4/22/10 8:38am

Unforunately, the only people who truely "get it" are people who have migraines. Other people can try, but they don't know.

Teri has put together a lot of resources to help educate the people in our lives who don't understand. Here is the link:

http://www.healthcentral.com/migraine/support-162187-5.html

But you can also find if if you go under Connect, Support and Advocacy Issues.

Try getting your husband to read some of this information. Or even better, maybe have him poke around our forums or shareposts so he can see the impact this disease has on our lives.

If that doesn't work, you might want to consider giving him food poisoning, the flu, and then jamming a screwdriver into his skull I mean, that's what my migraines feel like.

I hope you can make him understand. And if not, you always have us. We get it. And we're here for you.

Teresa

4/23/10 3:47pm

<<if that doesn't work, you might want to consider giving him food poisoning, the flu, and then jamming a screwdriver into his skull I mean, that's what my migraines feel like.>>

Oh, you got that right. ha

I can't explain mine. They are truly beyond verbal understanding. I can just say I feel like I'm having a massive heart attack in my brain. My vision sometimes goes out along with my hearing, I get vertigo very bad and nausea. I literally feel like I'm dying. I don't like taking my meds and often I put them off too long and by the time I do take them, they don't work. I can't take any of the triptans because of my heart. I wish I could though but my neuro doesn't recommend it since I have tachacardyia (where the heart beats very fast)

My brain.... I really do wonder what I did to deserve it... Things that make you go hummmmmm...

Thanks for the support dear. :-)

Hope you're having a migraine free day.

Have a good weekend.

Teresa

Jules

11/23/10 2:38pm

Hey there -

You mentioned tachycardia..... I used to have heart palpitations, and avoided caffeine, with made it worse.

However, Anxiety often goes hand in hand with Migraine. A very common symptom of Anxiety is.................heart palpitations. When I was a kid I called them 'heart flutters' and I thought it was normal - that everybody had them all the time.

I didnt realize I had anxiety - I did, and got it treated - and NO more heart palpitations! And now I can have my good strong coffee, and the caffeine actually helps me feel better.

- Julie

Teresa

11/24/10 10:32am

Hi Jules,

I've suffered from anxiety since the age of 24. My anxiety turned into agrophobia (msp?) and I was at a very low point where I couldn't even leave my house. I was one of those people you watched on Oprah. My Therapist had to come to my house and do sessions with me. A GREAT physologist and I credit him for saving my life, as I didn't have one before him. Along with therapy and anti-anxiety medicine, I am pretty much back to normal. I do still have flare ups and it took me 7 years of therapy to get back in a semi-normal state but I know all too well about anxiety attacks. He told me I was one of his worst cases. I diagnosed with severe anxiety disorder and I'm still on the same medicine I was 20 years ago. It works very well for me. Good news is.... its under control...

My tachycardia is from Atrial Fibrillation which was diganosed during an anxiety episode. They kept telling me my heart was racing from the attacks but after the attacks were over, my heart would continue to race. One day I went to the ER and my heart was pounding at 180-200 bpm & they did all kinds of test and I had to wear a heart recorder for about a week. My heart rate topped out at over 200 bpm and higher, SO... now I'm on medicine (2) and it's been working pretty good for many years now and I didn't have to have surgery or have my heart stopped like they were about to do. Sometimes it does flare up from stress and I just have to up my medicine by 20 mg's.... that usually takes care of the issue....so for me caffiene or anything like that isn't a trigger. Thank goodness.

Now, if I could just get my migraines under control I'd be good. ha!!!!

Hope everyone has a nice Thanksgiving & a migraine free one at that!!!

Teresa

6/10/10 5:20am

I felt so enraged reading yoru story - I guess becuase I can relate to your exact pain and your feelings.... and you sound like me just trying to get on with life in a normal way regardless of waht can at times feel like an uphill struggle. No one wants to suffer with a migriane and those who never have are lucky but they dont understand, how could they and to be fair other than for one day (maybe) just so that they can see how it feels "we wouldnt want them too. At times I have also felt like pulling the trigger to my own head but today I am pointing it at your husbands head...lol.. sorry but knee pain anyday please.

Teresa

6/10/10 6:28am

Yeah.... trust me ya'll, I wanted to drop kick him in his nuggets that day!!!!!!!

People just don't get it.... don't want to get it, and don't think they care to ever get it. Sad, if you think about it. We have to live our lives around our pain and suffering. We have a disease but everyone I know still thinks migraines are just a headache...........until they are informed of the difference, we'll never have empathy from our family, co-workers, bosses, friends and just people in general.

So sad. :-(

mari1512

9/18/10 11:45pm

Teresa,

Hang in there! I think we all need to start a support group.... my husband wavers from being helpful to being disgusted that I "haven't taken the time to get this cured" He seems to feel that if I put some time into it, that I would, and should be "cured." I have been to many doctors and neuro's. The only thing that has helped are abortives pain meds and careful lifestyle choices. Still, since mine are mostly hormonally triggered, I get at least one every month. They usually last anywhere from 5 to seven days.

I have given him Terri's letter, tried to get him on this sight, and begged him to go to the doctor with me. He still persists in saying I "should be able to get this under control" He even went so far as to say I "just don't know how to handle my emotions."

He makes me so mad... His attitude about them is starting to rub off on my kids. They will often say "Your sick again?" They just don't understand. If they could feel this pain for 60 seconds they would never question it again.

I think I am going to start opening the doors when I puke and pace around in front of them when I can't lay down, sit or stand in comfort. Maybe if they see and hear us in pain they will believe.

Keep the faith!

kdlcm

11/16/10 12:45pm

I suffer from chronic daily migraines, usually not as intense as yours but they can last a long time and wear me out. I'm still recovering from a migraine that kept me in bed for over a month! I have tried everything to control them and I'll find something that works for about 12-18 months and then it stops working including facet blocks, root nerve injections, trigger point injections, botox and surgery. My point is, I never give up trying to live a more normal life. Keep asking questions and get 2nd opinions, there is help. I'm starting on a new program today that has a more natural approach because of nasty side effects from medicine. Fortunately, my husband understands, talk to yours or bring him to a dr.'s appt. I really wish there were more support groups for caregivers of migraines. I know when I suffer, my entire family does too. I wish you good health.

Teresa

11/16/10 2:30pm

Hi kdlcm,

I've suffered for nearly 30 years now but mine got much worse 6 years ago at age 40. I think the help I get is about as good as it is going to get. I'm coming to terms with the quote "It is what it is". I have a good regiemen that works a lot of the time.

I do try to live my life to the very fullest. My husband has some understanding to some degree but he'll never get it as most people wont if they've never suffered brutal pain in their brain. It's frustrating sometimes....

Good luck to you as well & I wish you good health.

kdlcm

11/16/10 2:33pm

Isn't great to have a place to vent where people understand!

Teresa

11/16/10 2:36pm

YES!!!! I love this forum, board and everything about it. The information is by far the best most accurate, of ANY web page.

linda

1/29/11 6:45pm

Oh man Teresa...I so feel your pain and do I ever GET IT!! If it's any consolation...the migraines might get better or go away alltgether after menopause. I'm 55, haven't had a period in 3 years, and though my migraines have lessened IMMENSELY...they're not entirely gone either. They are not as frequent and not as intense. I would get them weekly...and in the strech of a month some would last 4 days. I fully remember the "head-in-the-toilet" days. Though I still occasionally feel nauseated....it beats barfing till your head feels like it's going to explode. The pain...like a sharp heated knife going through my eye balls....with all senses tweeked to the utmost every sight, sound, taste, feel and smell would either cause me to vomit or to recoil in pain. My husband, though grasping the context of migraines as best as a non-migraineur could, would still try to get me to go for a walk...bad enough in the Summer, with the sun beating down on you....but in the Winter, with the blinding glare off the snow and cold so intense it hurt? No!! No...thanks just the same, but I'm staying in. Perfumes get me right away...right between the eyes. I also have asthma...so scents are a trigger there too. How did your interview/meeting go?

People just don't get it.

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