Dealing w/ Friends' Dubious Advice?

Thanks for the replies re: my friend who's nagging me to see a chiropractor for my migraines.

Unfortunately, I also have others in my life who are suggesting various 'miracle cures' for my migraines. It just stresses me out all the more!

I've had severe chronic migraines for 25 years. In the last 3 years, my severe migraines have gone constant. In 25 years, I've seen every sort of specialist and tried every sort of medications and herbs, etc. Nothing helps me, except I now see a pain management doctor, so I'm at least able to get out of bed in the morning.

I don't think anyone who doesn't suffer from migraines understands just how SEVERE genuine MIGRAINES are! I'm a college grad, I've done the medical research, I know what I'm talking about. And I've tried it ALL.

I usually don't talk about my migraines, because people just don't understand that severity. They think it's 'just a headache' or something.

I recently went to an employment support group, because I'm trying to find some sort of a job, but I'm too ill to work. It was all HEALTHY people there, and THEY cannot find jobs in this economy, either. I said times are so hard, and it's almost impossible for me to work due to my severe constant migraines.

I must have had at least 6 people from that group attempt to 'help' or 'cure' my migraines with some very dubious and/or wacky 'medical advice'.

Ex: #1. "Have you ever seen a holistic doctor? My sister went to one for her migraines. All it took was a couple of adjustments and some herbs. Now her migraines are gone."
Ex. #2. "Have you ever tried Vick's Vapor Rub? I've heard that works for migraines".
Ex. #3 "Too bad you don't live in Canada. My mom lives in Canada and they sell codeine over-the-counter there. It really helps my mom with her migraines".
Ex. #4 "Have you tried Excedrin Migraine? It just might do the trick".
Ex #5 "Have you ever seen a doctor for those migraine of yours?"
Ex #6 "These days they have all kinds of treatments for migraine. I know because I'm a nurse. Something has got to work for you. Have you ever heard of the triptans?"

Get the idea, everyone? Maybe these people are trying to help. But 25 years of severe migraines and I have tried everything and nothing works!

I've been forced to learn more than most doctors know about migraine, due to my illness. My intelligence and my medical research skills are NOT the problem. I've spent more money than I care to think about on 'treatments', both conventional and alternative. Nothing ever works for me.

I have tried every medication. And YES, I take several medications but I'm still in a lot of pain. I see a pain management doctor who helps to bring the pain down to a level where I am at least able to get out of bed in the morning. My pain doc is GREAT. I have no problem getting the latest medications. The meds decrease my constant severe chronic pain by maybe 50%, which I think is about the best that I can hope for.

I found a lot of the above comments by these people trying to 'help' to be very condescending. I'm smart and I know a LOT about migraine. I've done more research into migraine than any of these people will ever do in their entire lifetimes.

Vick's Vapor Rub?! Please! Excedrin Migraine? Yeah...right. And if one more person tells me to see a holistic doctor, I don't know what I'll do. Herbs? I've tried them all. Triptans? Of course I not only know what they are; I've also tried every single one of them, to no avail.

I'm a very rare and severe case. I should be on Disability, but I no longer have the recent work credits. (People constantly tell me I should just 'go on Disability').

What's the best way to handle this? At the job seekers support group, should I have just not mentioned my migraines? How else to explain the 10-year gap in my employment, though?

I'm in a real Catch-22. I seriously doubt I'd be able to get a job, let alone keep one. The unemployed people could relate to how hard it is to find a job in this day and age (even with a B.A.). But obviously they know next to nothing about migraines or Disability rules. They simply have no idea what it's like to have a CONSTANT migraine and cannot relate to that AT ALL.

Should I have kept my mouth shut about my migraines? I told the truth: I'm chronically ill and haven't had a job in 10 years, due to severe health problems. Should I not mention 'migraine'? Should I call it something else?

Thanks for any advice re: What to tell people or what not to tell people.

M

I do know what you mean and I have experienced the same thing from "just stop getting so stressed" to "I read of this new miracle cure" and all things in between. It is annoying but they honestly mean well, just have no concept of what a real migraine really is and also don't understand that most of us really have tried almost everything under the sun to little or no avail.

Doesn't mean we give up though as there does always seem to be at least one more thing we can try. Sigh...maybe someday one of these hundreds of things we try will actually work. I'm still tinkering with diet and supplements.

We all go through this and it's so annoying. It's bad enough we have all this pain but to have to listen to all this and explain over and over, I've tried that, I've tried that, etc. And the cost! I could come close to buying a house with all I've spent on my migraines and neck pain.

I went to a brithday party and a man came up to me and said he heard about me having terrible migraines and he thought he could help me. He asked if I ever heard of MSG. I was so rude, but I couldn't help it, I burst out laughing. I told him I'd had them for at least 40 years and didn't he think I had done some research at least and knew about MSG? I was able to tell him a few places it's included that you wouldn't expect to find it. I have actually just walked away from people and said I didn't want to talk about it.

I am still able to work. My job just requires me to sit at a computer. A lot of days I take painkillers but I don't let anyone know and I hide it from people around me. I have a few people I confide in for sympathy but no one else could guess how bad I feel. It's so sad having to live life like this.

I use Fiorinal with codeine, a muscle relaxer, Phenergen for nausea and I have some Vicodin for those nights when the pain is just too much. Not a healthy cocktail. I take Magnesium and have done all the herbs, naturopaths, chiropractors, injections, prescriptions, all of it. But I still keep trying. I'm going to someone who actually does DNA testing next week. I'll see what happens. I keep saying I'm going to give up but what if something gives me some relief? There is something WRONG with us! Why can't they figure it out?

Hang in there! I hope something works out for you, both with finding relief and finding employment.

I've been thinking about this thread all day and think in the future I will simply say "thank you for caring" smile and change the subject. It hopefully will avoid the long annoying explanations.

The absolute worst one in my opinion is when people ask you if you're drinking enough water. As if, you've had migraines for decades and was somehow dehydrated the whole time. Also, dehydration doesn't even cause migraines for most people.

I don't bring my migraines up. If I call in sick to work, I say I am not feeling well. I take my meds in front of my coworkers but just don't say anything and they don't ask me about them. Maybe for an employment group you could state that you have a chronic pain illness but leave the details vague.

Some people can be genuinely trying to help but I think most are just arrogant and selfish. If they truly where paying attention to our lives then they wouldn't give us advice about the migraines and ask us stupid questions.

Able people do not understand chronic illness. They think when someone gets sick they either get better or they die. They can't wrap their head around continuous limitations and pain.

Especially in a professional environment, I ask myself: what's the least amount of detail people need to know? I'll say I have a "chronic health condition" or "a serious health challenge" or some similar language. I will tell my direct supervisor and the HR director more detail within the context of negotiating reasonable accomodations. But general work colleagues do not need to know the details.

Thumbs up to this.

Platypus wrote:Able people do not understand chronic illness. They think when someone gets sick they either get better or they die. They can't wrap their head around continuous limitations and pain.

Especially in a professional environment, I ask myself: what's the least amount of detail people need to know? I'll say I have a "chronic health condition" or "a serious health challenge" or some similar language. I will tell my direct supervisor and the HR director more detail within the context of negotiating reasonable accomodations. But general work colleagues do not need to know the details.

Platypus, it's so true that able people have no idea what chronic illness is like. They think 'migraine' is just a headache that can be cured by rubbing some Vick's Vapor Rub on temples or running hot/cold water over head in shower, or actually going running, etc. I've known very smart people with Phd's in Psychology who gave me the above advice. Some medical doctors, too.

My pain is so severe and constant it feels like a brain tumor (but I think it's 'just' migraine---have had CT's and MRI's).

Sometimes I wonder what the response would be if I told people I had a brain tumor. I'd probably get a lot more sympathy and understanding, but I don't want to lie.

Suffered 25 years with disabling migraines, not much empathy at all from people.

In 2008, I got diagnosed with breast cancer. Suddenly, lots of people in my life acknowledged cancer as a 'serious' illness. I know it can be terminal. Doctors told me I was going to die, but it's been 6 years and I'm still here. I refused chemo and radiation; I know all that can go wrong and I felt it would kill me. I consented to lumpectomy only. Took my chances and never looked back.

My personal experience:

Migraine=25 years of chronic pain and debilitating suffering. Unable to do much of anything. Cannot work, etc.

Cancer=had no symptoms before or after lumpectomy. Went through stressful biopsies and MRI's. Tests were the stressful part. Never felt 'ill'. Underwent ONE surgery to remove tumor. Surgery hurt for a couple weeks, but I healed quickly. Surgeon told me I still had cancer and needed mastectomy. I refused. I refused chemo, radiation, mastectomy, lymph node dissection, etc. All that would have caused nasty side effects that I was unwilling to go through. Would rather die than go through all that.

People can hardly believe that going through cancer was 100 times easier than dealing with chronic migraine disease. (If you refuse the 'treatments', it will be quite easy). Suzanne Somers writes about this and she really knows her medical info. But I made the decision independently, after spending MONTHS at the medical library, etc.

This was my personal decision; I'm not advocating this for others. But you have to trust your gut. Doctors can and do misdiagnose patients. Maybe I was misdiagnosed. Or, more likely, my cancer was not 'aggressive' as docs told me. A certain percentage of breast cancers are actually 'benign' in the sense that they will never develop or threaten the life of the patient. It's a little known fact that I learned from doing TONS of medical research.

So for me, migraine has been so much worse than breast cancer. Just my personal anecdote.

It doesn't help that there's an OTC product called Excedrin Migraine. I could take a whole bottle of that crap and it wouldn't do a thing for one of my HA's. It's like if they made an OTC product called Excedrin Heart Disease. (No offense to anyone that likes Excedrin Migraine, but you know what I mean.)

We have a new member in my IRL migraine support group whose wife doesn't understand his migraines (which are very severe), and he has to even argue w/ her to come to our meetups. I feel so bad for him. I'm alone but I'd rather be alone than w/ someone that doesn't have compassion for my pain. It's not like it's hard to do a little research in the 21st century. Migraine is one of the most debilitating health conditions there is.

We live in a world were most people are extremely narcissistic. That pretty much sums it up as to why most people react to others situations the way they do. They are extremely self-centered and they just lack the ability to feel anything for others other than themselves.

People aren't trying to recommend various remedies because they are selfish or narcissistic. (They wouldn't bother if that were the case.) They are honestly trying to help (even if misinformed).  It really distresses many people to see someone with serious pain and not be able to help. 

It's best to say "Thanks for your concern. Migraines are a very complex neurological condition.  I'm working with the best medical team in the area ".  No further explanation or detail is required.

Migrainegirl wrote:People aren't trying to recommend various remedies because they are selfish or narcissistic. (They wouldn't bother if that were the case.) They are honestly trying to help (even if misinformed).  It really distresses many people to see someone with serious pain and not be able to help. 

It's best to say "Thanks for your concern. Migraines are a very complex neurological condition.  I'm working with the best medical team in the area ".  No further explanation or detail is required.

A big thumbs up, I completely agree.

Migraine Girl and Kem10, so what you are saying is that everybody has good intentions...people that you barely know care so much about your migraines that they just have to give others advice?
If you look at my post up above I said that some may have good intentions but most do not. So you obviously contradicted yourselves(Kem10 who agreed) by your response.

Also, your comment on how to respond is condenscending. How I chose to respond is up to me.

Do me a favor, don't respond to any of my posts anymore since it seems like you enjoy starting sh** with me...

I'm sorry you were offended Kate but honestly most are truly just wanting to be helpful. How you choose to respond to them is of course up to you.

"I'm sorry you were offended Kate but honestly most are truly just wanting to be helpful." More condenscending bs...

This used to be a pleasant forum, where people try to help and support each other. 

  Anyone who thinks most people are not well intentioned is obviously in a pretty sad place. I'm sorry you think my  more positive opinion is " giving you sh**".  Don't worry, I won't bother to correspond with either of you again.  I have much better uses of my time.

I believe that most people are well-intentioned, just terribly misinformed about migraine disease. Most doctors are misinformed, too, so how can we expect the general public to be informed?

I agree with Platypus' point about the Excedrin: Migraine example. If they were a product named Excedrin: Cancer, it would be pulled off the market in a heartbeat. FDA does NOT allow over-the-counter products that claim to 'cure' cancer.

I certainly didn't mean to start any arguments here, and I sure hope I didn't. I always try to be nice to people and respectful. Let's all get along, OK? We may have differing opinions, but we've all got migraines.

People aren't trying to recommend various remedies because they are selfish or narcissistic. (They wouldn't bother if that were the case.) They are honestly trying to help (even if misinformed). It really distresses many people to see someone with serious pain and not be able to help.

It's best to say "Thanks for your concern. Migraines are a very complex neurological condition. I'm working with the best medical team in the area ". No further explanation or detail is required.
--------------------------------------------------------------------------------------------------------------------
Migrainegirl, I agree with what you've posted above. Excellent advice. When you said you wouldn't correspond with 'either' of us again, I sincerely hope that I was not included in that. Peace.

I am trying to write in response to Brenda, but it keeps deleting. What is going on, I wonder. Did this happen to anyone else? Or, is this my computer I wonder.

It was mainly about another migraneurs who also has breast cancer and also severe, daily migraines and always gets much sympathy for  her cancer (which, like in your case, is not causing her any pain, or discomfort) but she gest no sympathy for her extreme migraine pain.

This is causing her constant frustration. People just do not want to know. It is quite amazing she tells me.

I also said in my lost post how much I admire your courage in taking charge of your treatment and making such brave, but well informed decision, against the medical establishment pressures.

Migrainegirl, I agree with you that most people who make some irritating suggestions  mean well and try to be helpful. IT is a shame that often they are not well informed, or do not realise the realities of living with this condition and how debilitating it is. Sometimes it is just embarrassment, people say things they mean to be comforting, but they are not.

It is sad when people start attacking each other here. We are all suffering.
 Kate, I am sure no one is trying to offend anyone, so please we can do without bad language here.
Please, please let's  do not go back to the bad old days of Ronda's forum, where such attacks were a daily occurrence. Most people who behaved like this seem to be more comfortable on another forums these days.

I also agree with what Migraine girl and others have said and also hope I'm not included in the "either of you" though it looks like I was. Perhaps what I said was misunderstood. In any case we do indeed all have migraines and are all trying to find solutions to dealing with not only the migraines but the issues connected with them.

"so please we can do without bad language here"    Another condenscending comment...


"anyone who thinks most people are not well intended is obviously in a pretty sad place" It's funny how others can be so blinded to your comments, Migraine Girl. I can see right through you... Actually, I'm in the best place I've ever been. You are clearly delusional in your thinking and well, I prefer to see reality...

"Actually, I'm in the best place I've ever been"....Really? It certainly does not sound like it, Kate.
You sound so terribly angry. So ready to offend others, just because they dare to have a different opinion, to yours.
Why not try some tolerance and understanding for a change.

Mini, A contradiction in your words because you obviously haven't considered that maybe what I'm saying is the truth. You like the the others who commented about me think that you are the only ones who are right.

The very fact is that if you and Kem10 were so mature, you would have not got involved with my issue with Migraine Girl. That is what mature women do.

Mini, thanks for the nice comment about how I chose to handle the breast cancer situation. Yes, the medical pressure was the most intense pressure I've ever felt in my life. Then of course there was tons of pressure from family and friends. If it's possible to scare someone to death, the doctors just about did that to me.

6 years later and still healthy---I'm so glad I made the decision that I did.

I'm so sorry for your friend who is also dealing with severe daily migraines and also breast cancer. Sounds like she and I would have lots to talk about. I understand her frustrations all too well.

(Peace and good vibes to everyone here!)