Migraine and Headache Research

Hi all,

I'm a research assistant at Stony Brook University, and we're working to develop a study to investigate the
link between the intensity and duration of a headache or migraine and social support. There's plenty of literature out there that states that social support can indeed be helpful to alleviate some symptoms of many illnesses, but we haven't seen much of that work for people sufffering from headaches or migraines.

This project is in its developing stages, but I would love to get some feedback from you. We were wondering whether or not the people on this forum would be willing to take part in a week or 10-day long daily diary survey, and if your spouses/partners would be interested in doing so as well. Everything would be done over the phone and over the internet and would require completing the survey just once every night for a week to 10 days.

If there is a link between headache or migraine and social support, that can have a strong implication on how doctors treat this disease - perhaps to consider the biological as well as the social environment of the patient.

Any feedback would be very much appreciated. Thank you in advance for your time.

p.s. Can some people talk about how often they get a headache or a migraine? The duration of the surveys would ultimately be dependent on that since we want to capture at least one headache or migraine attack. Thank you!

anything for the cause

I think it is great that someone is willing to study anything that impacts the lives of migraineurs. The difficulty for me and perhaps others who suffer chronic, near daily migraine/headache, is being able to be available and functional enough to answer survey questions every day for 10 days.

I tend to be functional on a 50/50 basis these days. On those tough days, I just try to get through the work day (I now work 6 hours/day instead of full-time) and hope to get some things done at home. Forget having a social life on most days....I'm sure most here can relate.

So, I'd like to participate, but could not guarantee follow-through if I were having a particularly bad day. If there is a way to work around this, I'd be willing. Please provide more information. Thank you.
Jane

i speak only for myself. my 41-yr migraine history has nothing at all to do with social or any other kind of support. mine is a neurological problem triggered by lyme disease, or perhaps another similar infective organism which can leave long-lasting neurological damage. (there are no good tests for lyme).

when i have the killer kind of migraines i want only to be left totally alone for the 40 hours it takes for the M to retreat. i'd be interested to see how many of us on this forum have that response, rather than wanting/needing someone there with them.

now that i have "new daily persistent headache", for the past 12 or so years, i do need an understanding support system. but i truly think nobody can possibly "get" the kind of pain we have, unless they've had it at least one time in their lives.

my family does seem compassionate, but anyone with a chronic and long-lasting problem soon becomes a pain to others. nobody wants to hear about this on and on and on. it would take an extraordinarily sympathetic friend or loved one to hang in there for the duration. therefore, i've found it best to minimize the pain i feel and just go on with life as best i can. dianne

Hi there,

Welcome to migrainepage

I think this is important research. In so far as social support (but perhaps in particular spousal/family support imo) alleviates the physiological stressors involved in a migraineur's self care and daily responsibilities (getting to the doctor, the pharmacy, the hospital, cooking, caring for children, animals, the home) to that extent I believe the intensity or at least the perceived suffering during a migraine attack could be reduced.

But then again, it's equally feasible that for migraineurs who are not at the severe end of the spectrum in terms of pain or duration, the process of self-reliance and having to be out and about might distract from that inward focus which I know in myself seems to magnify the pain so on a self-report measure they might rate themselves in a different way.

I would be interested to hear how you intend to experimentally control for the wildly different intensity and duration of migraine which people suffer to begin with in order to see if there's any effect of support. Are you doing a multiple regression? Factor analysis? (I'm a stats newb but interested).

living

Hi everyone,

Thank you so much for your support. We are encouraged by the responses that you all are giving and judging by the various responses, there seems to be a need for more conclusive knowledge about the role of social support.

gardner50 - We appreciate your support and will let you know once the project begins.

Jangel - Hi Jane, that's a good point about the feasibility of the project. We'll make every effort to keep the surveys as short and simple for you as possible because we are interested in hearing from migraine sufferers.

dcook60 - Thank you for your feedback. While there are cases where social support is important, there also might be cases where they're not - that's what we're trying to find out.

living - Thanks for the welcome! We're definitely going to take into account the different levels of pain intensity, duration and frequency, and this will all be controlled for in the analysis. This project is still in the development phases which is why we are posting here to get different views on it. We will elaborate more on the procedure and analysis at a later point, feel free to PM me if you'd like to discuss it further.

Again, thank you all for the wonderful feedback and we look forward to hearing from more of you!

My social support is from these forums, on bad days, I read the stories of forum members and I realize, that I am not doing too bad. Also, I can vent to my heart's content, with people who understand the illness.

Also, the medications and treatments (main medical or alternative), forum members have tried, have been very helpful. For me, I am especially glad when forum members post medication side effects. If it were not for these type of postings, I would have never figured out that the adverse side effects, I was experiencing, was from one medication I was taking.

Martin

I would like to know more about this. Are you considering all migraine sufferers? Are you going to be looking at the role of the support system, or both the support system and medication usage? I doubt many folks on here have the same medications, which can differ the outcome.

I also wonder about the support system. I think that few of us have really good support networks. Most of us have been at this long enough that our 'support' had kind of fizzled and moved on. I think it generally tends to start out strong, but once it is determined to be a migraine and not a brain tumor, the compassion evaporates.

One thing I would suggest is that DR's learn to treat this as a serious illness/condition. Until they do , I highly doubt other people will. I think the Dr's need to educate the family members and not just wave it off as a migraine. The explanation of pain and medication and everything else would be much more accepted if it came from a professional instead of a paitent. I swear sometimes people think I am lying about the pain!

Just some ideas, but I am interested in seeing where this goes. Thanks for thinking of us!

Hi all

Steph that is such a good point regarding medications. These things are all potential confounds which will have to be controlled for. If the study finds an effect of support they will have to be able to argue convincingly that it was not due to differences between individuals' medication usage.

I agree about the gradual withdrawal of support too - I think for myself it has been a gradual withdrawal from support as much as of support - nothing malicious about it. Just life. People move on with their health filled lives. If this is true for other migraineurs also, it will have a major impact on how the analysis can be interpreted.

I have learned trigger avoidance strategies which include not going out publicly very often at all - to the extent of not socialising etc due to the fact that there is a very clear relationship for me between going outside the house and getting stabbed with light in the eyes by headlights, sunlight, reflected light (= instant 3 day migraine), getting anxiety about letting people down due to a migraine (trigger; e.g., fear about not being able to go to a pre-arranged social event so it's easier not to make arrangements ahead of time) these two wither away the social support over time.

If this research were to find an association between support and migraine characteristics, there are causal factors to be considered in regard to why social support is or is not present. If it's not there because of my (or other migraineurs) long term trigger avoidance behaviour, that is something which should be investigated. Pain is a very effective learning aid so it is hard to believe (but not impossible) that by avoiding positive supportive social interactions I am maximising the frequency, intensity and duration of migraine. Because in real life there are no guarantees about the factors surrounding any one interaction, I guess. Avoid all interactions and sacrifice some good ones - but overall avoid all triggers...?

If you find long term migraineurs with little social support, I think it would be important to check how often they have gone out and socialised over the years despite their migraine because social support is always a two way street. It doesn't just materialise at the end of a 20 year battle with migraine (except perhaps if someone has the support of a church or other type of organised support).

Other things I can think of...Some people aren't triggered by light and sound as much as others. I am which I why I don't go out much. Also, personally, I now find that when I meet people at uni it is harder to break through (into friendship) because they see me wearing sunglasses indoors and perhaps perceive me as eccentric, weird or 'different'. They can't see my eyes so it must be weird. I remember seeing older people wearing those coloured glasses when I was younger and thinking 'strange old people'. I'm also on Topamax which makes me a bit obtuse and slow on the uptake which doesn't endear me to my supervisor, for example.

So bottom line - avoidance of social environments due to physical and subsequently emotional triggers (primarily light and subsequently shame and embarrassment about getting migraines all the time) has created a form of social anxiety in me. This necessarily has impacted on my keenness to get out and socialise - and in the context of the fact that the triggers remain...access to social support is minimal.

Long one.

Cheers !

I totally agree with you. I think there are a lot of factors for this study that need to be defined. I am glad this was posted on here because maybe they will be able to figure out how or what kind of study for this would be the best way to collect useable data!

Hi livinggood, Steph and Martin,

Thank you so much for your thoughtful responses. These are definitely issues that we have to consider. What we are mainly interested in looking at now is social support from a close partner/spouse specifically. For example, the effects of how spouses' respond to migraineurs in pain. The issue with medication is a good point, and this is something we will incorporate into the study by asking people on a daily basis the kinds of medication they are using.

Thank you once again for the great feedback!
Gim

Hi,

I would be happy to help in anyway I can. I'd love to participate in this if possible.

I have always had a pretty good support system- everyone here, plus good friends and family. I am 3O and have chronic intractable migraine/New Daiy Persistent Headache. I basically have some level of pain all the time. I have found that though friends may not shorten the duration of a migraine for me, the distraction and support they provide makes it more bearable. Well, that and a good neuro.

I'd be happy to help.

Pain free days,
sailingm

Hi there,

I have a very supportive partner - and would be happy to participate. My migraines have been completely under control for the past month though so hopefully I won't get any during the study! Oh, I'm in Australia. Does that matter?

Cheers,