I'm having trouble with side effects from the Topamax right now, the worst of which is nausea and I'm still suffering from daily headaches.
My headaches have been really bad for the last 5 years and I don't know how to live with them anymore. I go to work, come home and mostly go to bed. Sleeping seems to be the only time I get any relief. I was off work earlier this year having been diagnosed with depression. I've recovered but feel like it's hovering close by all of the time. I'm afraid to leave home in case I get a headache and need to go to bed.
Does anyone have suggestions for how to live successfully with migraine pain? How do you stay motivated? How do you get the household chores done? How do you make it to work each day?
Thanks for your suggestions?
Chronic Daily Headache and Migraine sufferer for 19 yrs.
Thanks for your replies. I have a great support system. My husband has stuck in there for the past 13 years through the worst of it. I know he doesn't understand but he does his best. He asks what he can do for me and encourages me in the best way he can. He does his best to get me out of the house and it is thanks to him that I do get up each day.
It's like you said, we just do. I just get so frustrated, especially when I feel so sick.
Dan------Do I remember correctly? Are you taking Topamax? One of the side effects I've had, and others have also reported, is that it makes us cry easily. Talk to your doctor. It's common when being treated for migraines, for your doctor to prescribe an antidepressant also. Not just for depression, but also as another treatment for the migraines. It's also great to keep writing to everyone here.
I REALLY had trouble with crying! It doesn't happen as often now, but BOY! It drove my husband nuts! There was absolutely nothing he could do to make me stop crying! It just had to run it's course and, eventually, I'd stop! A friend gave me some hints, though. If you want to stop, like if your kids are really bothered and you need to get your composure, first, get a drink of water. Keep it in your hand. It's really hard to cry if you keep sipping water. Then, in your mind, count backward from 1000 by three's. When you get good at that, try counting backward by 7's. It works. Change the way you do it. Do division, multiply. It gets your mind going in another direction. But when you need to, let yourself cry when you're alone. And then come talk to us.........
Post Edited (Merciful) : 8/4/2005 5:15:31 PM (GMT-6)
One of the things I just loved when a friend told me........it really made me stop and think hard about doctors who seem to try hard to help, but really don't help? I think almost everyone here has had that experience.
Remember: 50% of the doctors out there graduated in the bottom half of their class!
That's one of the reasons it's so helpful to come here and talk to others who have been there. The majority of our doctors have not experienced migraine pain, or the side effects of new medications, or the frustrations involved in waiting for new medicines to work.
You can almost always find someone here with a similar experience.
And you can always find someone who cares about how you feel.
Thanks Sue for reminding me about counselling. When I was diagnosed with depression I started seeing a psychologist and she is fantastic. I saw her today and she really helps me to relax. She specializes in chronic pain and is able to help me learn to live with the pain every day and reduce it through relaxation and meditation.
I tend to get into an unhealthy cycle. I get a migraine, I panic, I tense up, which makes the headache worse.I feel guilty, I get more tense, the headache gets worse. I don't sleep well, the headache gets worse, I start worrying, the headache gets worse, and on and on and on. The psychologist has taught me a variety of relaxation exercises and how to reframe my cognitions. She reminds me that its all in how I look at things and my internal dialogue. I'm not a failure for having a headache. It's not my fault I have headaches and my life's not over because I have a headache. I will be okay, I will get through it and life will go on.
Merciful, I'm sorry to hear about the long difficult journey you have had. I have struggled with doctor's and other health care professionals over the years. I take my husband, mother or father with me now for any major medical procedures, especially if I don't feel strong enough to stand up to professionals. My husband does not like to stand up to them but does for me. He is a police office, 6'2", 230 lbs, so usually all he has to do is tell them to stop and they listen. I explain before we go what is okay and what is not and I demand that he be allowed in with me. Doctor's and hospitals don't always like family members to be present but I've come to realize that it's my body and only I can make the decisions for it. I know it best and I've lived with this illness for the last several years and now what has and hasn't worked. The support from family also helps me know if I'm being reasonable or not.
A judgement I face that infuriates me from medical professionals and average joes is "you have a headache, what's your problem?" I try not to take it personally and often bring levity to the moment by threatening to throw up on people's shoes to show how serious my problem is. That usually gets people's attention. :) I've learned that you have to see the lighter side of things or you could go insane.
Thanks again for your thoughts. I learned this week I need to take it day by day and just do as much as I can.
I want to respond to your threat to throw up on someone's shoes............
A friend of mine who gets migraines does not get any warning before a migraine hits.......except one........she vomits with no advance notice. Heaven help you if you're in her way It really embarasses her, but she has no control over it!
Please pass your condolences on to your friend who spontaneously vomits ' . I have an incredible aversion to vomitting which is probably why I use it as a threat. I will go to great ends to not throw up, taking Gravol whenever I take a medication that may make me sick. It's also probably why the nausea bothers me so much.
In Las Vegas a hotel clerk believed me to be drunk rather than sick and wouldn't check me into a room, they were having technical difficulties, and I tried so hard not to throw up. Unfortunately the lobby was in the middle of a Casino with flashing lights, sounds and seemed to be extremely warm. In addition I had just arrived off a plane where I had drank at least 2 glasses of wine (before I stopped drinking). Eventually I ended up vomitting in the lobby. I then got a room and the staff did take me seriously.
The joys of being a migraine sufferer.
Dan--I want to talk to you first. When you feel bad and you know you're missing out on part of your little kids' lives, invite them to lie quitely on the bed with you. Allow them to snuggle up gently with you. If you can stand it, let them each whisper a story to you. Lie very still with your eyes closed. Tell them with your smile that you're listening to them.
When you feel somewhat human, try to think of little things that you can do with them that don't take a lot of energy. Rolling a ball on the floor, while you all sit in a circle with your feet touching. Lie on the floor with them while they watch TV or sway gently to music that's turned down really low. When you can, tell them stories, too. Ask your wife to try and come up with some quiet time ideas, too. You don't have to be outside playing baseball and tickling them to be a good Dad.
Check with the local department of mental health. See if there is a low or no cost counseling service available to you. Talking to someone about what's happening to you might help. I know how frustrating this can be. A professional counselor might be able to help you along in some ways that you and I can't think of right now.
Now, for those of you with the nausea trouble....I found a good solution. Peppermint candy. It's simple and readily available. It has to contain peppermint oil. Not peppermint flavor. It's the natural peppermint oil that cures the nausea. Sucking on a piece of candy when you have any nausea can really help.
There is another "natural" solution that I've heard of. I've never tried it, though. You can buy ginger pills in a health food store. Ginger pills are said to cure nausea, also. Aparently Feverfew, which is a plant product that's sold as a preventive and a solution for Migraines, can cause nausea for some people. It's sometimes marketed with ginger already combined in it.
I'm glad that those of you who wrote recently have figured out about rebound migraines. I, too, was not warned about them, until I was getting migraines every day and taking my triptan every day. It was very hard to work down to taking the triptan only 2 or 3 times a week. But I got a push from my insurance company. They stopped supplying more than 12 per month!
I think that quality of life with migraines is one of the biggest struggles we all face.
When I feel fine...which is rare, I realize that I am a great and wonderful person with lots to offer (and being a single person that is something that is a definite necessity...SELF WORTH) Being able to see and know what you have and what you are is enough regardless of what anyone else thinks about you is so important.
When I am sick and struggling with headaches, especially constant ones (which of course brings anxiety about the ones to come, depression about the pain and of course financial struggle and then lack of friends or ability to handle responsibilities much less energy to go out and have fun like a "normal" person my age...then the guilt...woah, there's a big one!!!) Anyway, when I struggle with this illness, I feel worthless, and useless. I wonder why I am here. I doubt my ability as a human being, a mother-to-be someday (and to my doggie now), as a co-worker, and as a friend, daughter, lover and even moderator here...I struggle with getting up and taking a shower and simple tasks such as brushing my hair and putting a simple sentence together...but somehow find the will to keep on pushing as you all do.
Lately I have had some good days and some not so good days....and thank God for the good ones, I remember times when I didn't have those. I am trying to think of something positive and uplifting to help you get through those times...and I am at a loss...I don't know what to say. I do remember what got me through mine (barely) I remember looking at my puppy (who is now 3 years old) he would look at me with those beautiful brown eyes and do something goofy...I would laugh, which would make my head hurt worse...but I thought to myself...If I gave up and I was not around anymore...who would love him like I do??? NO ONE...
There is something special about each and everyone of you...and you bring something special to the world that people adore. Sometimes we forget to tell you...and that is something that I am working on...remembering each and everyday to tell the ones you love...that you love them, and why.
So, today is my long-winded day! I just wanted to throw my two cents in and say hi, I have missed you guys...and that I love you all dearly!
Sara--That letter was wonderful. When I signed on tonight, I was overjoyed to see your name on so many posts. It's so good to see you here again.
---------Now-----------For everybody---------------Please read this-----------------------
I tend to jump all over here when I get to this forum and just put in my opinions and ideas whenever I think I might be able to help. So I don't really remember exactly where I was last week when I wrote that I had found out that I have diabetes. Type 2 diabetes. That's the kind when you make insulin but your body doesn't process it correctly. I found out quite by accident when I fainted during a physical therapy session and some very quick tests were done to see why that might have happened.
I want to make a suggestion to anyone who does not have good health right now. And if you have migraines all the time, you don't have good health.
Get a complete --- a complete physical.
Mind you, it's only been 6 days since I found out about this. Six days since I've been checking my blood sugar, eating this special diet, taking these special pills. Each time I've had a migraine that I wanted to medicate, I checked my blood sugar, and it was way out of the normal range. The worst migraine warned me of a low blood sugar attack, which can be an immediate danger, whereas the high blood sugar can cause long term damage.
Of course, I'm not saying your migraines are because you have diabetes. Even my doctor said diabetes didn't have anything to do with migraines. All I'm saying is "Get the rest of your body checked, too."
Thanks Sara for your wonderful response. I think you captured what we all feel. When I wrote that message I was having a "bad" day. I am so tired of struggling with my headaches and wish to just be a normal person. I was a normal person once and I yearn for that back every day.
I fight the depression that comes with constant pain and now the terrible side effects of the medications I'm taking to try and fix them. I feel worse now than I did when this all started.
You're letter made me think about the things I have to be thankful for, one of which is my family. I have a wonderful husband. He has stuck by my side for the past 13 years. The last year has been a struggle. I went on to short term disability and slipped into a fairly severe depression. It was for him that I got out of bed each day. It was for him that I got dressed each day. Generally I live my life for me, but when there didn't seem to be a reason to, he was that reason. My parents and sister are also incredibly supportive. They are always there when I need them. I know that whatever happens financially or in my marriage I have somewhere to go and someone to turn to. That makes life a lot easier.
I haven't had a lot of good days lately. Remembering the good days on the "bad" days might make them that much more tolerable. Finding this site has also been incredible. Knowing there are other people out there that are struggling like me doesn't leave me feeling as alone as I have felt in the past. A lot of people I interract with on a daily basis don't understand what I'm going through.
In your message you said "I am trying to think of something positive and uplifting to help you get through those times...and I am at a loss...I don't know what to say." In my opinion you did just that with your letter. Everything you said was positive and uplifting and will help me get through the tough times. Thanks again for the fantastic letter.