Quality of Life with Chronic Daily Migraines

 Hello,

You may know me from my other posts. I suffer from Chronic Daily Migraines and am on an assortment of medications:

• Nadolol
• Celexa
• Topamax

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?

 

Its hard, very hard. And even those closest to us really don't "understand" how we feel. I hope you have a good support system. Even with one its still tough. I guess over the years I've just learned to deal with my daily headaches better. I just made a decision that I couldn't sleep my like away. I take my meds everyday and try not to feel guilty about taking so much medication- its what gets me through the day. I'm also lucky that I have a supportive job. I think forums like this also help- to know that there are other sufferers out there just like you. I think a lot of us also suffer from depression and/or anxiety. Hopefully your Celexa will help with that. I'm more prone to anxiety and I take Lexapro for it- its very, very similar to Celexa. Just hang in there- try to do things that make you happy- try not to be too hard on yourself. Hopefully things will get easier for you soon. Good luck.

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.........

~~Pegasis

 

Hi,

I use to suffer terrible debilitating migranes, throw up, numb, can't see the whole bit. Yuck. Now i very rearly get them and if i do they are not much more than a headache that i can take some over the counter pain killers for and keep going.

What worked for me?

I had no idea how stressed i was untill i became unstressed. Good counselling helped me see how i was creating my own stress (i was sure it was everyone else, if only they would behave how i wanted them too), and how to change my thoughts so as to manage the stress. Very freeing and enpowering.

My migraines were alway AFTER the stress was gone, like a relief reflex. While the presure was on i was okay. so looking to see if that is a factor for you could help. if you are getting them continually then it is highly on the cards  that you are perminantly in a state of stress.

Find what works for you, meditation, hypnosis, exercise all help but most of al you need some Rational emotive therapy. Excelent stuff.

The body mind conection is amazing. there are documented cases of multiple personality people  who have scars that apper and disapper depending on which personality is dominant! There is much more. REad some quantum healing books. Good book i read years ago was called 'Loving your disease" crummy title but opened my eyes and set me on a journy not only to health but happiness.

Good luck

Sue

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.

~~Pegasis

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!

~~Pegasis

I've had migraines for several years now, but it was only about six months ago that they turned into daily chronic migraines. Naturally, I started taking my Imitrex/Amerge/Zomig/Relpax/Whatever every day when I woke up with a migraine. In the several years that I had been prescribed these drugs by different doctors (I was moving around a lot), no one ever bothered to tell me that I should only take them up to twice a week and that they, like OTC painkillers, can cause rebound headaches. It wasn't until I had been suffering daily migraines for several months and had to drop out of school for a semester that I happened to read something online about rebound headaches caused by triptans and mentioned it to my neurologist (who, btw, knew I was taking them daily, was like "oh, yeah, you should really only take them once or twice a week." Gee, thanks for telling me, Doc...). Anyway, getting off them was hell because I had a non-stop killer migraine for about a week and a half. But since I've stopped taking them daily, the migraines have gotten a lot better. I'll have a "bad" week about every other week, where I'll get 2-3 migraines. So it's still not great, but it beats the hell out of every single day! (I'm on 200mg Topamax, but the Topamax didn't seem to do anything at all until I stopped taking the triptans daily)

Speaking of triptans, do any of you get incredibly nauseated by them? I take one and feel sick for at least a good 12 hours afterward...Any that are less harsh on your stomach but just as effective against your migraines?

Hello Gallyndur,

I have gone through similar experiences as you describe. Every 6 months to a year I end up weaning off Tylenol with Codeine. I take Triptans occassionally but don't find them as effective. I don't find they make me sick, but I have heard that from other people.

Some of my symptoms are psychological. I get a headache, I panic, the headache gets worse, etc. I find that the Codeine helps me relax. The problem is that the Codeine is a narcotic and I end up with rebound headaches from both the Tylenol and Codeine. I have tried stopping cold turkey but end up in the hospital taking something stronger. In Canada we can buy Tylenol with Codeine in much smaller doses over the counter. I buy those and make it a rule not to ask or accept any stronger prescrptions. Its my way of controlling how much I get.

I've also had similar challenges with Doctors. I get really frustrated because I feel like I don't get the whole story unless I ask the right questions and I don't always know the right questions.

Thanks for your thoughts. It always helps to know that other people are going through the same thing.

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!

~~Pegasis

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!

Hang in there and if there is anything I can do...Let me know...

Sara

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.