lonely migraine sufferer

Hey there,
I just wanted to reach out and touch some other migraine sufferers. Sounds a bit weird, huh! I'm just struggling to accept my life as a person who has 'chronic pain' and don't really quite know how to cope with it. I wondered what you guys do to cope. Psychologically I mean. How do you cope with your friends not really understanding what migraines are - even though they try. I've totally withdrawn from all my friends. Except one maybe. Even my husband, who is extremely supportive - I don't work but I study part-time, seems to look at me sideways when I get another migraine that doesn't fall into a pattern that he thinks he's worked out for them. I've withdrawn even from him because I'm through trying to explain every single time I get a migraine that I don't know what caused it and I can't explain why the drugs aren't stopping it. He keeps commenting and it makes me feel like its my fault. I do feel like it's my fault even tho I know it isn't. Do you guys ever feel that way?

I always feel like I'm inconvenient or malingering. I get them all the time. They last three days if the abortive meds don't work. I'm on Topamax (Topiramate) as a preventative for all the good that's doing. I've had migraines for coming up to 9 years. "Severe" as in at least once or twice a week for about 3 years. I take about 300 - 600mg of Sumatriptan a week to keep them at bay. The doctor says there are no side effects from taking so much of that. In Australia the brand name for that is Imigran - do you guys use that? It's not working so much any more since I've had to take so much of it. They tend to come back in 8 hours if they go away at all. I still take it though because it often will take the edge off at least.

Anyway, that's my reach out. Can you guys please share with me how you cope in your daily lives, with your friends and relationships? I can't take it much more. xx

Hi Living, I was wondering what country you live in?
Is it Oz.....Here in the UK its called Imigran too.

Excuse my brevity, my head is really bad today, but I needed to just say Hi at least.
And to tell you, I lost most of my friends because they think I'm flaky

Lot of us surviving through like you.

Will write more, maybe PM

Take care
P

Hiya, Welcome to the forum. You are not alone anymore.

You sound a little depressed. Are you/have you talked to your doctor about that? Depression and migraines usually goes hand in hand. Friendships and migraines are not easy but for me I've had to learn not to take it personally. A person doesn't need to understand in order to love you. In fact, they get extra points for loving you just the way you are!

I go to many parties and my friends are astounded that I have migraines and I don't drink. Make no mistake = I do suffer. I get migraines almost every day now. But I look at it this way. I suffer sitting at home being bored and lonley. At the parties I sit where it is quieter, I find my favoriter people, the wild people are distractions, I smoke a little pot which really helps the migraines, and ultimately, it is a better trade off for me.

Now I'm not saying that is for you, but I'm using that as an example. Maybe taking a community course or doing something the interest you (outside of your home) will give you the distraction. Give yourself the resolve that you hurt at home so you hurt outside. Take the painkillers and go. Forgive those that don't know.

What I'm saying sounds real simple on paper, but in reality it's not. We all hurt and hurt bad. When I go in public and I am asked, I find it better to just point to my head and not give an explaination. Some people know, most people don't. Ultimately it is my problem and that is the cold hard truth of it.

BUT, we are here for you. So if ever you need to talk to someone who understand, then come onto this forum.

Coping is something that takes time to perfect. I'm 30+ years into this and at times I still find it hard to cope. Friends and family can have a hard time because they want you to get better. Unfortunately migraines are a chronic disease and nobody knows what stupid little thing triggered THIS attack. Our families try to find a pattern and sometimes there is one, but most times it is an accumulation of little things and one more little thing sets it off. That is hard to come to terms with since we realllly want an easy answer.

Having your husband read some of the posts here would give him a really good idea of what a chronic migrainer goes through and how hard we are all searching for an answer. At the very least he will get that you what you are going through is what we are all going through.

I've had a long time to accept that my plans have to be fluid as I never know how I am going to feel. I make plans but also let people know that following through is dependent upon what my body is going to do. I also have Fibromyalgia, trigeminal neuralgia and peripheral neuralgia so I never know from one day to the next if I am going to be ok or in pain. My family understands this for the most part. I've lost friends but I look at that as them getting on with their lives as my participation in theirs is so spotty. I have some true blue long time friends that accept my limitations and they are precious people.

Do what you can and try not to worry about the things you can't.
Alli

Everything you said is what I think we all feel. All of which is very natural to feel. I have been fighting with headaches since I was 9, migraines since I was around 24. So for me chronic pain for over 25 years. I know pain. I too have lost friends and family due to this monster in my life. NO ONE WANTS TO HANG WITH MONSTERS.

I learned real fast that if people can't deal with my pain, and being that they are not in my body than thats a loss for them. I learned to surround myself with people that I knew would be their for me. I stopped wasteing my time on ones that did not show me support. Now I know this is hard to do.

Best way to explain migraines to people is like this. Migraines are a VERY complex disease. You have to be the one to educate them on this disease. Explain to them that one person and have five triggers and other person have fifteen triggers, all different. Plus you may have a triiger that only bothers you for a short time. When people have a correct knowledge of a disease, they are better able to unerstand it.

Sad to say of the education has to come from the horses mouth, YOU. Just being funny there. LOL. But really you have to explain to them all their is about this disease. My mother out of all people just recently got my disease. It took me over 25 years to help her to really understand this disease. That I was not making this up.

I stared telling people that I was just born with a very sensitive head. It can't handle too much of something or too little of something.

Plus don't waste energy on how people feel. You have no control over that. Focus on you.

Hi guys,

Thanks so much for your responses. I am so lonely atm it made me cry just to get your responses! Haha isn't that funny in a kind of sad pathetic way...

Yes I'm a little depressed - and I've heard that migraine and depression go hand in hand, but can anyone be surprised by that! Geez...waking up with yet another stonking head is enough to depress anyone. I'm certainly not clinically depressed thank God. Feeling down about feeling like crap is a pretty normal response in my opinion. I'm surprised any of us get out of bed. I love your energy Enigma that you still go to parties and smoke a little pot to help with the migraines - I've heard that can help but haven't noticed it for myself in years gone by when I used to dabble. I got a bit extra sad last night because I thought I might try anti depressants as a preventative since topomax isn't really working and then I read about serotonin syndrome which I would get because I eat so many triptans.

I actually am trying to lead an active life and it's the limitations on that which depress me. I'm studying honours in psychology would you believe it. I'm so upset because I can't think clearly and I really need to in order to get good results at university. I'm having to consider making changes to my chosen career path because of the migraines and I think that is what is really getting me down. I don't think I can get through a Master's degree with this head. It's probably time for me to go and talk to someone about my own coping strategies because denial isn't really working for me.

I have tried explaining migraines to people but often they forget and I even had to leave a job because my boss refused to keep the blinds shut when the sun was setting in my face.

You all seem to have become flexible, tolerant, and patient in dealing with your migraines and other illnesses. I seem to have gone the other way. I'm furious! I will try and take a leaf out of your positivity. I know I have to make a change internally because what I'm doing is not helping me live a happy life.

Thanks guys.

I'm with you Living. I get angry as does everyone else here I expect.

I want to go out. I want to feel good. I want to do things when I want to. I want, I want.....

Sound like a spoilt brat don't I. At least you can say that here. Don't think it would go down to well many other places.

So don't stress, we know you don't feel well and just how it feels.

You mentioned getting help with coping strategies. I, myself, went through a bout or denial. I think everyone does. The hard thing for me to accept was that Maybe there wasn't a cure, just a way to treat the pain. Chronic is generally a term for something that isn't going away. It is very difficult to accept that, let alone just trying towrap your brain around the fact that this pain, that is invading your life, ruining your friendships, and making it hard to feel apart of anything other than your pain, might stick around for a while. Many people on this forum have had this chronic pain for years, some for more years than I have been alive.

(pardon my inept typing, I am not feeling great right now)

You can only do what you can do. I understand the anger. I used to be a really independent person. Now there are times I have to rely on other people to help me. My husband, my family, friends. It isn't often, but I was never used to allowing someone to help me before the migraines. Well, now I can't do it all myself. I can't be the person who can do, do , do and go, go, go. I resent that. I miss things I used to do. Unfortunately this is what I have.

It is normal to be angry, sad, confused, down, resentful, tired, and the other myriad of feelings. And yes, this sucks. However, there are things that you can do. For me the hardest thing was to learn my limitations. Before migraines, I didn't even know that word existed. Now I have pretty well self-imposed limitations. I have had to accomodate myself in so many ways to make my life easier. It is possible, and it is also possible to have relationships with people who, if they don't fully get it, at least sympathize.

I have learned that if your friends and family can't see past migraines, and constant pain, to the person you really are besides your condition, then they are not fully supportive and maybe they never really have been. For me I don't need those people in my life. I don't so much see it as losing friends, sadly enough to me its more like losing baggage. If people in you life are making you feel like a burden, or rolling their eyes when you are in pain, they don't truely care about you. They will never be fully supportive, and that is going to do nothing but make you feel worse about yourself, and frankly we have enough pain, we don't need that as well. Take Care

I just wanted to add to what the others have said that living with migraines is a day to day struggle........we all have our good and bad coping days - please don't be so hard on yourself. There are days when I am not patient or tolerant at all about what my body is doing to me and there are days when I can allow space in my life for my migraines. We move forward in our lives and have successes and failures in dealing with the migraines. Have you tried any other preventatives besides the topamax? It is a good idea to talk to your doc about the depression - does he/she work with a lot of migraine patients? Forums like this one really help me cope - knowing I am not alone in my struggles is so important. And welcome..........you have found a great place to let it all out. Leslie

Steph said it all very well. I've had migraine since I was 16 and they were easily controlled by over the counter meds and rest - no prescription meds ever needed at all. 5 months ago something changed - still not sure what, maybe hormones, who knows - anyway, I have had chronic daily migraines since then and am now on the medication rollercoaster, trying to find something that will help. I am on short term disability from my job and I learned pretty fast who my real friends are. I also learned how important my family is. I was leaning towards leaving my husband this year after my daughter graduated high school. When this monster struck my husband changed and became more helpful and supportive. I saw my life in a whole new meaning. They say things happen for a reason. Maybe this was a wake up call for me to learn to appreciate my family and the precious things in my life - who knows.

I have good days and bad days. Sad that I have lost a lot of my independence. When it's a nice sunny day (here in Canada we have only a few months of those!) I get upset that I have to stay inside to wait out the migraine when the rest of the world is carrying on. I keep telling myself that I'm not going to die (even though sometimes it feels like it), there are worse people off than me and HOPEFULLY when I get thru menopause I'll be one of the stats that has their migraine disappear.

Anyway, all of us here understand what you are going through and feel your pain - literally. Try and take one day at a time and know you are not alone.

Hugs!
T

Hi Living,

While we may not have all the answers here, at least everyone is supportive and empathetic. We are all living through similar. One thing I learned is that with this chronic problem, I cannot push myself the way I used to. I can't work long hours and travel and expect to be still functional. I have had to cut way back and do less and take it slower because I don't do anyone, least of all myself, any good if I just make myself sick with another headache.

You may want to consider slowing down on your psych program. Can you take one or two classes a semester? That might be more doable than trying to push yourself with a full load. And dropping out completely might be harder psychologically than just slowing down. I am not sure where you are at, but if in the states, they would have to let you go to part time if it was part of an accommodation for a disability, which migraine is.

Hi everyone and thanks again for your replies.

My doctor doesn't seem to know a whole lot about migraines beyond the standard stuff of Sandomigran, Endep, Inderol, etc preventatives. I can't use the blood pressure one because I have low blood pressure. I want to go on an antidepressant but I take so much Imigran I'm terrified I'll get that serotonin syndrome thingy...It sounds like antidepressants might be good for migraine but I don't want to end up even more fried than I am on Topamax!

I have slowed down my uni course to part time and that is working for me. Trying to accept limitations is going to be a hard one for me. Even though the limitations are all over my house in the form of drug packets and pill boxes. It's really hard. I can see that I will have to get disciplined about it though because I still don't eat as well as I should, or as regularly - I don't exercise (it gives me migraines). There are things I could probably do that might improve my health from the inside out so I need to look at what I can do instead of whining so much.

I think I'm just having a down week because this $##@#$% migraine hasn't shifted for a week. Oh wait, it did change sides, so that's something I guess.
And I'm realising that I'm not going to be the clinical psychologist I thought I would be. Not because I don't have the intellect or the skills, but because of migraines. And the fury I feel about that is just beyond description. Knowing that all of you have are also facing these kinds of limitations because of migraines just makes me realise how high the cost is. I realise it's not a passing blip, migraines have been with me for 9 years and they're not going away. And it will cost me a lot more before it's through.

I know eventually I will have to stop looking at the cost and focus on the positives of life because 'happy is the man who is content with what he has' is one of the truest things I've ever read. But I think I'm not quite through wallowing in the 'woe is me' phase of grieving for my lost health yet.

Oh Migrainegirl: I did a course on disability at uni and mentioned my chronic migraine. We were permitted to choose a disability to do a presentation on so I chose migraine. She said 'migraines aren't a disability'. I just stared at her. She said they are disabling, but they're not a disability. I nearly decked her. But since she was going to be marking my assignments I let it go!

Thanks for listening guys. Sorry to whine on. I know it's all exactly what you go through as well so you understand like no-one else on the planet.

Since I agree and share the feelings and experinces of most of the other people who responded to you so comprehensively, Living, I only wish to point out that the name you have chosed for yourself - LIVING - sggests to me that despite migraine and depression suggest to me that you have a real spirit, and therefore you will make most of what your life, even with migraines, will have to offer you in the future. Your studies as a clinical psychologist will be always extremely useful to you in order tol equip you well to deal with this condition.
And if and when we have better migraine treatemnt you might still be able to practice your worthwhile profession. Things do change! Triptans have helped many of us who before they came have lost all hope. Things change. New medicines will come.

Many of us who lived with this condition for many decades found that somehow or other, we still manage to have fulfulling and rewarding lives - very much worth living.

LIVING - I ilke your name very much. I like what it tells us about the way you are as a person. Yes, you will go through periods of depression, you will have heartache and bad disappointments, but you will learn to cope and to deal with this condition in your onw unique way. It takes time to develop the best coping startegies - but it will happen for you.

One of the most difficult aspects about it is to accept that migraine is going to be part of our lives from now on.
After that we set about, re-arranging our lives, set up reliable support network with a good and supportive neurologist to advise about the best outcomes - and then demand the best treatment.

No, many people will never understand, even people who love us - after all pain is invisible. This is hard to accept - we all felt that at times - but this is how it is.
Migraine teaches us many things - such as compassion and understanding, so we learn to be more tolerant of others and love them all the same.
Stay wil us, ask question, vent, whatever you need, it is good to know that you found us here.
This is a good place for people with migraine.

Thanks Mini.

Your words read like a hug. *squeeze* =)

chrissygirl wrote:Everything you said is what I think we all feel. All of which is very natural to feel. ........ I too have lost friends and family due to this monster in my life. NO ONE WANTS TO HANG WITH MONSTERS.

Living--oh, how I can relate. Chrissygirl said it so well "no one wants to hang with monsters", and what a monster chronic migraine is!

I think I pull away from people because I just can't keep commitments, cant be there for them when THEY need me, and I can be quite irritable when I'm in pain. It's difficult trying to be positive.

I haven't been here for a few months, and just checked in today. Your post touched my heart. This is a great group of wonderful, caring people. You will find unconditional love and support here.

Please take care.

Living, unfortunately your professor's comment that migraines are not a disability is a common misperception. Many people think it's just an occasional bad headache, no big deal. Unfortunately for most of us on this site, it does indeed meet the definition of disability, which is a substantial limitation on one or more of the major life functions. Chronic migraine pretty much interferes with all of them more than 1/2 the time. Some on this site have qualified for disability benefits. The comment is an indication of how misunderstood this problem really is.

I hope you don't give up on your dream of becoming a clinical psychologist. The world needs persons like yourself who can understand what people are really going through who suffer from challenges like this.

I think I pull away from people because I just can't keep commitments, cant be there for them when THEY need me, and I can be quite irritable when I'm in pain. It's difficult trying to be positive.

Thanks Becky - that is precisely my life in a nutshell. I don't even like myself much any more! I'm no fun to be around . Nightmare huh. Welcome back...but I hope you're not back because your head's exploding!

Migrainegirl - that professor was such an advocate for disability. Mad for disability. And yet she could so easily, with a word, throw a judgement out about what constitutes disability without taking the time to consider the full range of what people go through. I totally agree with you - of course it's a disability - her stupid comment about there being a difference between 'disabling' and 'disability' was utter rubbish. As for going on with clinical psychology - well I'll find a way to do something. It won't be clinical but it might be counselling psychology. I just hope I can get through a course! The workload for that masters is lighter (I think, I still have to look into it).

Edit: got rid of that bouncing emoticon because it was making my carotid pulse along with it! lol

living, i'm glad you found this supportive bunch of folks. i'm maybe the oldest one here, and have had M's (as we call 'em) for 41 years. recently, when i told a new neurologist that, he actually LAUGHED at me. i wanted to kill him. like i wouldn't remember when these monstrous things started???

this guy was horribly arrogant in every way, and of course, i never considered darkening his door again. neuros, most of us have found, are among THE most know-it-all docs on the planet.

there are so many mysteries about the brain in general, and about migraine in particular, it is refreshing to talk with a doctor who actually gets that part, and doesn't pretend to know more than he/she does.

all i wanted to add to the wise posts ahead of mine is that yes, i did go thru years of being angry and resentful that i could not have the life i wanted, but now i'm older and mellower, i s'pose.

in spite of all the pain and broken plans, i managed to raise 5 children to adulthood and am mighty grateful to have them now. they all understand. they have seen their mom looking like she's at death's door, and they have all hauled me off to the ER at one time or another. two of them have infrequent M's. (thank god, infrequent!)

maybe it sounds stupid, but i am grateful for my life, and the blessings i have, including grandchildren. with all these years of experimenting with every treatment under the sun and moon, and failing most, i am taking more drugs than i ever thought possible.

and they are keeping me going, and working up to 30 hours/week at the age of 71. i can't do my "profession" of medical technology anymore, but i do enjoy the elder care i can do. compassion is what we do best, here. we all know pretty exactly how you feel, and we're here for you. dianne

dcook60 wrote:living, i'm maybe the oldest one here,

Diane, I have you beat, I am 73. However, my chronic daily headaches only started about six years ago.

Martin

martin, they are monsters no matter at what age they start. but i do think it's highly unusual that they'd start at 66-67, as yours did.

did you have an accident or injury then? sorry, if you've posted your history, i can't remember sh**. dianne

Diane, I believe that they started from long term (19 years) statin and niacin use, simvastatin in the last 8 years. After I switched to that statin, in the fall of 2003, the muscles started getting tighter and tighter with all the blood tests saying I did not have a problem. It was gradual, over a 2-3 year period, the neck and shoulder muscles got very stiff.

That is my analysis, the neruo said that millions of people take it, so statins could not be the cause of the muscle and headache problem. My PCP agreed with me, about four months ago, so, I went off of them. Muscles are better, but the headache is still with me. Not as bad as when I started, but some days are very troublesome.

Since, I can tell to the hour and date when the chronic daily headache started, I think it is NDPH. That is one of the criteria for NDPH.

From my view point, after reading the stories of other forum members, I am lucky that the headaches started after I had been retired for a number of years.

Martin

that professor was such an advocate for disability

That makes me think of the sign language class our youngest daughter took. She has severe dyslexia and has a standing accommodation at her University, under the Americans With Disabilities law, to get extra time on tests. When she had to take a foreign language class in order to graduate, she decided on sign language thinking that might be easier for her than French or Spanish. Well the professor, who was deaf, refused to allow her the accommodation she was entitled to. So while she could understand the sign language she could not write it down fast enough, and barely passed the course. We found it so ironic that this was the only professor who wouldn't provide the accommodation. Despite this, she is graduating with honors next month and we are very proud of how far she has come, despite her challenges.