Quality of Life with Chronic Daily Migraines

Diseases & Conditions Migraine Headache
1
:-)  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?

:-)  

2
I'm afraid I don't have any answers but I can certainly understand what you are saying.  I too have chronic daily migraines and have had them for almost 6 years.  I recently lost a management job as a result of them.  The reason given was poor attendence and poor job performance.  I get out of bed and look for work but it takes everything I have.  Now that I don't have insurance I can't afford any of the medication I was on except for Percocet for pain.  In addition to migraine meds I was also taking meds for depression.  It is so bad now that I cry at the drop of a hat.  How do we make it through the day?  We just do it because we have no choice.  Even though I have a wife and 3 wonderful kids my quality of life is zero right now.

droll  (AKA Dan)

3
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.

NERAK

4
It is an awful thing for all of us to have. I ask myself all the time how I cope and I really don't know, superwoman maybe. I get daily ones also. We would all get down every now and then and wonder what our lives would be like if we didn't have this problem. I have no answers for you either. Do you still seek couselling. Hopefully we can all get some answers to enlighten us.
Good luck.

Trace

Chronic Daily Headache and Migraine sufferer for 19 yrs.

5

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.

6
I just joined this forum for the Lyme Disease Board. I couldn't help coming to this board because severe, daily migraines are what led me to my diagnosis. I am still taking Amitriptaline and Topamax for the headaches, the Ami lets me actually sleep, instead of waking up with pain in the night.

I found this website and alot of the symptoms matched, it may be worth while for you check into Lyme Disease, as that is the underlying cause of my headaches.

http://www.canlyme.com/

Good luck to you all, may you find the right combination of meds to get you through.
7

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 yeah

8
:-)  Thanks Pegasis!
 
You're suggestions have been really great, especially about the Topamax. I reduced my dosage by 25 mg this weekend and am starting to feel somewhat normal again. I think how I was feeling when I wrote this message was more side effects, feeling really really down. It's hard when you're in the middle of it to see out and you're right, writing here really helps.
 
Receiving the responses I have has really helped. Just to know that I'm not alone and there are other spouses out there living with it. I get very afraid sometimes that my husband is going to give up. Though it's been over 12 years and I've been sick for most of them, in my healthier moments I realize he's not going anywhere.
 
Thanks again everyone.

 
Coquitlam55
 
"Be faithful in small things because it is in them that your strength lies."
Mother Teresa

9
 
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
10
    I have had migrianes since the age of 4, well as far back as my mother can recall me complaining of head aches, It wasn't till I was older and I was trying to control a headache that was lasting 2 weeks, I was out of my mind. I finally when to the hospital, I was taking 17 asprin a day, PLEASE DON'T DO THIS SORT OF THING ANYONE. I had drained half of my blood due to a ulcer I have ringing in the ears ALL THE TIME and I have restless legs from all I was taking of this asprin, I had a twich of one eye but I don't have it any more. I was given 3 transfussions and I could of had 4 but they didn't think it was to benefit me. My himaglobim ( sorry can't spell) was 8 when it was to be 14 or more,  I got it to 11. They did all sorts of test and this is when I found out I was having migraines. Believe you me I know what pian it is like. I get a bad attack and I don't even want to think it hurt to do so, no light,  no sound and everyone just stay clear of me. Now you have to find a doctor that believes you first and one that will work with you. I have had a few. Now if the doctor doesn't believe in how bad the pain is you might as well find another doctor. There are many drugs on the market for this and I advise you to search for them on your own,  see the doctors... don't know ALL of what is out there and you can ask them to give you this or that. I warn there are some out there that have very bad effects like imatrix,  "GOD I HATE THAT drug" it makes me feel like I am going into a heart attack. I had one doctor that said "Well you would do anything" "RED FLAG" if a doctor has this opinoin leave now this is not what you need. I had a doctor for about 6 years or more he was trying I thought but one day I had a supper bad head ache and I went for shots he gave me demerol but this started at 9 a m,  at 11 a m I was not better so once more I went to him and one more I got shots,  first was 50 mg, next was 75 mg  and I went to the next day I still had it but I slept most of the other day so now I don't have a car and can't zip up to him and I called 9 a m ish, afew hours I called again to see if he had got the message and  afew hours agian and  few more hours again. It was nearly time for them to close and they called.  he said to do what I was doing I had vikadin and it is like tylenol with me so I had my husband take me to the hospital and there I got 2 more shot oxycotin and I was giving some of this to take home. I never saw this docor agian.  I now have a female doctor that is better and what I thought was the other doctor was trying to help me,  he really didn't have enough information,  this doctor I have now is listining to me, not a 5 minute deal and I have said about some drugs and she has let me have demerol 100 mg for the bad ones. People you need more then just the migraine stuff it is good if it works but if you have bad ones all the time and you doctor can't help,  I heard there is something called a "pain management" place the doctor should know of it and if you ask where one is and get a referal THEY can help you I would think.  I am able to help anyone I have been on many MANY drugs for this and don't be surprised if you are called a drug addict. I had this happen once the hospital just was giving me demerol and I didn't know at that time or have a computer to look up things,  this is something I have did for sometime to find drug that are for the migraines so I am not labeled a addict agian. Well here is my side of migraines any comment please feel free.
 
    Merciful

Post Edited (Merciful) : 8/4/2005 5:15:31 PM (GMT-6)

11

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! eyes

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 yeah

12
 no doubt I think you are right the doctors don't seem to know what a awful pain is, I can't tell them enough it is like a stabbing thobbing so awful is the pain I wish I just cut my head off till it is gone. ok ok not really but I know you know what I mean thanks for the reply.
 
  Merciful
13

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. :-)

 
Coquitlam55
 
"Be faithful in small things because it is in them that your strength lies."
Mother Teresa

14
Coquitlam55
 
  I don't have the problem of speaking up for myself but at one time being called a drug addict I am very careful as to how I say things. I am very anxious as to have something for that I know is what I call heavy duty pain killers but if you seem to wanting ( forgive me I don't know how to explain this) they in my opinoin will think you need a fix and I just want something for the bad ones. I tryt to stay way from all things that I KNOW that will trigger head aches for me. I have found one thing now this is a prevenative for me every morning I take 2 excedrine funnny but this seemsto help me and I am most of the time with no bangers I don't know why. it is asprin tylenol ( can't spell the word but it is tylenol) and caffine I drink a cup of coffee most mornings with this. I also have found Gerneric don't work as the actual drug JEZ! this must sound awful. When talk to you later got to go.
 
 Mercuful
15

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 tongue   It really embarasses her, but she has no control over it!

~~Pegasis yeah

16
Pegasis,

Sorry it took so long to respond. Yes I am on topamax. I also take Zoloft and Wellbutrin for the depresson (and Crying). Sometimes I think the medicine is just fighting an uphill battle. All the anti-depressants in the world can't change the fact that daily chronic migraines that you can't control seem to ruin your life. ANd that's what makes me cry the most. I have 3 children age 5 and under and I have already missed out on so much with them because of the migraines.

droll  (AKA Dan)

17
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?
18

Pegasis,

Please pass your condolences on to your friend who spontaneously vomits ' sad . 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.  tongue  

 

 
Coquitlam55
 
"Be faithful in small things because it is in them that your strength lies."
Mother Teresa

19
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.

 
Coquitlam55
 
"Be faithful in small things because it is in them that your strength lies."
Mother Teresa

20

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.

~~Pegasis yeah