lack of understanding

I searched out this chat because I am so bothered by "non-sufferers" lack of understanding. I have migraines 2-4 times a week...sometimes for 3 or 4 days. Many of my friends think I'm just a "weenie". They can't imagine a headache that causes you to need to go to bed. Truly they are precious people but it is SO discouraging to me. We are avid church goers and if I miss a service or whatever because of my head people have actually asked me why I can't have a headache at church just a well as having one at home. Like I said, lack of understanding. I don't even know how to describe what a migraine is like without sounding like a whiner. Even then they don't understand. Any advice...? It is so depressing.

It's just plain difficult. Before I was diagnosed with migraines, I thought it was toothache. I had a tooth removed and the pain continued. I remember saying to a friend that I wasn't sure if I should go back to the dentist or (and just as I was about to say a doctor) she interrupted with "a psychologist". How totally soul destroying it feels when your friends think you're making up pain.

It's become easier for me over the years as a few friends admit they too have had a few migraines and would hate to have them so regularly. To the others who refuse to understand and continue to judge, don't waste your time trying to justify your pain to them. Those close to you will see your symptoms and understand that it's not just made up. I'm *so* grateful that I get a droopy eye and sometimes a blood nose: physical signs that are indisputable that something is going on.

Have you been offered triptans? They can kill a migraine and give you back a huge amount of time that would otherwise be lost to this horrible disease if you find a suitable one. No need to suffer unnecessarily if they work for you.

migraine is a disease, a neurological one. that means its origin is in the brain, and can't be seen, like the effects of some other diseases.

are these people you call friends really practicing whatever their religion teaches? how about compassion for people who are ill? obviously none of their families or acquaintances have ever suffered the hellish pain of a REAL migraine. it is NOT a headache. stress that to these clueless folks.

and yes, if they are as debilitating to you as you state, please get thee to a doctor who understands migraine, and get yourself some drugs that work for you. the triptans (like imitrex) are miracles for many. dianne

I am so sorry.......I think we all have dealt with friends who just don't understand what we deal with every day. One of my migraine symptoms is I fade out - lose consciousness and also sometimes shake - there is a small group of my friends that have seen this happen and understand what I go through. I don't feel the need to share with everyone what my migraines are like - what I do want and hope for is that they will take me at my word - that my migraines are disabling and I do what I can when I can. For those friends who do not get that my life has changed and I can't do what I used to do.........it is their loss............I have made new friends in my new "migraine-life" and I know that they love and care for who I am now - not for who I was. Does that make sense?

I also have 2 button that says.............."My disabling chronic illness is more real than your imaginary medical expertise." "I love electrical storms.....except when they happen in my brain." Migraine is a neurological disorder - not just a headache - with a couple of my friends I have sat them done and showed them websites and tried to educate them about what is happening to me and that has helped. Would it be helpful if your spouse or a close friend who understands what you are dealing with spoke to the friends who think you are a "weenie"? We who deal with this mess are the strongest people I know - getting out of bed every day and trying again is the hardest thing to do and we all keep on moving forward!

I am glad you found us......please stay in touch! Leslie

So sorry to hear that there are people out there who are giving you a hard time. Sometimes it is really hard to have an invisible illness. I agree with what others have posted... focus on the good relationships, try to educate those who don't understand. Above all, don't doubt yourself and don't minimize what you are feeling. I think one of the biggest things we migrainers wrestle with is the guilt that goes with the invisible symptoms. Don't let those doubters get to you. Your pain is real and everyone on this website gets it. I hope that things get easier for you.

..."My disabling chronic illness is more real than your imaginary medical expertise

Excellent!! I love it. Best quote I've heard.

But honestly, your friends sound just clueless mostly. Lucky them. Tell them to imagine this: First they get a really bad cold brain freeze sort of pain, only instead of lasting 30 seconds, it lasts for days. Then, someone has a really bright flood light in your eyes at all times. On top of that the sound level for everything has gone up to 120 Db. And you feel nauseas and lousy like you have the flu. And every time you move it gets 2x worse.

Now, how about going to a party? Sound like fun? How about going into an enclosed space with really loud singing and organ music that makes everything throb and increases the pain level by 2x? No way I can go to church with a migraine. Even with my earplugs in. Please, run over my legs with your car instead if you are really my friend.

We are not weenies. Every day is an exercise in courage. We deserve medals just for showing up each day.

Well, welcome to the group. You will find that everyone on here understands what you are going through.

I know the church thing is especially hard. I had people say that I just needed to pray and I would be fine. I heard things like, "Aren't you healed yet? Maybe you don't have enough faith." Just know that is it NOT your fault that you have migraines. It just happens and people don't understand how bad it is. They just think you have the kind of headaches they have.

When people haven't gone through the pain, they can't imagine it. I don't have sinus problems, so I can't imagine what sinus sufferers go through, but I know the pain I'm in and give them the benefit of the doubt.
Hang in there and try and find your support where you can. Or go to chuch and throw up on them. Oh, sorry, that wasn't so nice. But, hey, maybe they would understand what you're going through.

You'll see this topic come up again and again and we have all have had to deal with it. Just take one day at a time and know that you're doing the best you can to get through. And keep coming back here, because no one understands like all of us here.

-Cathy

Wow....just wow. These people lack compassion and sympathy. I try and stay as far away from these type of people anymore. They are not worth my time. It's not their place to tell you how to handle your migraines. I'm amazed at how many people like to tell us what we need to do and how we should deal with our migraines. REALLY...?! Oh yeah, I forgot, THEY are experts on migraine disease....

I thought this question might fit well under this topic. I am feeling extremely frustrated right now because of a lack of understanding re: emotional triggers. I have discovered that one of my biggest triggers is anxiety and that my extended family (siblings and parents) cause me a great deal of anxiety.

The problem is that because anxiety is emotional and is related to stress, I'm supposedly supposed to have more control over it than something like lack of sleep, for example. There is a sense that if I would just stop allowing myself to get anxious, I wouldn't get stuck in these week/month long migraine cycles and I would feel so much better.

The thing is, I've done everything I can think of to deal with the anxiety. I meditate; I do deep breathing; I pray; I see a psychologist. I recognize that my family triggers me and I have lost a number of family members from my life because of this but sometimes confrontations are simply unavoidable. And no matter how I try to prepare myself and to relax, the anxiety happens and then the migraine crash.

So, how do I get across the point that just because anxiety is psychological and I am aware that anxiety triggers migraines for me, I can't simply decide not to be anxious?

Have you tried any of the SSRI drugs? (e.g. Amitriptyline, nortriptaline, cymbalta) They can be effective for reducing anxiety, which may help on that account.

CM - I disagree with your statement that anxiety is psychological. I feel that some of us are more vulnerable to stress due to our brain chemistry - just like depression. There are anti-anxiety meds on the market that you might want to talk to your doc about. Also behavioral therapy might help you cope better in stressful situations. Years ago I had panic attacks and periods of high anxiety that led to agoraphobia - this was back in the 70's and not much was understood about the biochemical roots of my problem but I did find a desensitization program helpful.

When you go to family gatherings maybe just go for very limited amounts of time - don't set yourself up for failure - small exposures to your stressors can help you be more successful and then you will probably stop stoking the fire as much before you arrive at a gathering. Am I making any sense?

Also, your comment about having some control over something like lack of sleep made me chuckle. I struggle with insomnia and have given up any control over this wonderfully frustrating part of who I am! Leslie

Leslie, I don't sleep well either. I can tell that it is starting to take a toll me physically and mentally.
I try and take naps but it's not a real solution and I don't want to take sleeping pills as they are highly addictive. How are you coping during the day with the lack of sleep?

Sleeping well is hugely important for reducing migraines. I found that a small dose of amitriptyline (20 mg) definitely had me sleeping better. If its a very bad night, trazanidine, or Tylenol PM also helps a lot.

I agree there can be some helpful meds that aren't sleeping meds (my doctor won't let me take those in combo with my pain meds anyways). Amitriptyline is popular, and so are Zanaflex/Tizanadine (a muscle relaxer; I take this) and even Trazadone (another old anti depressant). Unisom is an otc sleeping medication without additives. Another otc treatment which is natural is melatonin. I'd ask your doctor even before starting something otc though. I'd recommend against any otc sleep aids with pain reliever additives if you don't need the pain killer, as that could be a rebound risk.

If you haven't already, a sleep specialist could be helpful as they can run a sleep study to double check something else isn't going on...these can diagnosis a lot in addition to sleep apnea. However, sleep problems are common with chronic pain conditions like chronic migraine/headache and fibro. They didn't find anything helpful on mine (besides that I don't get much REM), but I'm glad I did it. I've been on the Zanaflex for years and have found it very helpful (plus I haven't had neck spasms anymore, and less tightness). No issues if I need to skip a night, and I haven't needed to escalate the dose. Recently we added Ritalin in the morning and that has also been helpful. Also haven't felt dependent on it (I skip it on the weekends). Best wishes.

Migrainegirl and Jewishmother,

Thanks for your advice and suggestions. Haven't posted much lately because I'm stuck in a really bad migraine cycle at the moment and am having trouble collecting my thoughts. Just wanted to say that I have tried the anxiety/depression meds and couldn't stay on them due to side effects.

Have also tried limiting my family exposure. I haven't attended family events in a couple of years due to the stress they cause me. My family doesn't understand this and my decision created a whole other set of problems/pressure. I'm at the point now where I know what is going to trigger me; I prepare for it by meditating, deep breathing etc. and then despite my best efforts I still crash within 48 hours. I am only really in contact with a few family members now - my dad, my sister-in-law and my nephew. I have lost a sister and her husband, three nieces, a brother, and mother in all of this. I know I would probably be better off severing ties completely but how to do that? They are my family.

Anyways, thanks for your replies. It is nice to know you folks are out there.