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your message
Kat Alfriend
Thursday, May 28, 2009 at 03:28 PMre: your message
dlmw_58
Friday, May 29, 2009 at 07:07 AMMigraine has many faces and trying to figure out how to live with them has it's moments. They say Lupus is the desease with many faces, but I think that many ilnesses are very difficult to diagnose and treat. No one thing seems to be the key to fit all migraineurs or solve the problem.
It's very hard keeping a positive outlook when we feel we have to give up so much in order to get by and with so little understanding from the people around us.
They look at us like we are absolutely silly in the head! Our body lies to others as they only see an able body (usually we are well hidden when our migraines are at their worst). It's a known fact that a person with a visible disability will get the 'respect' and acknowledgment far more than those of us with 'hidden' health problems.
If I started to count the times migraines have ruined plans, things given up because of them and the number of times people have made hurtful remarks...well, it would be totally depressing!
I've managed to build a wall to those who have no understanding, and to be truthful, I have slowly but surely 'dropped' those who are not helpful or understanding...as we don't need to worry about what others are saying or thinking...more stress that we certainly don't need...but in doing that, I certainly have a smaller circle of people I let in.
It's kind of hard not to let people know that you have migraines as to the many times plans have to be changed or cancelled. Unreliable should be my first name...as it's been told to me so many times over the years...by employers, so called friends (but at the same time we have to understand how they feel when they are all keyed up to go somewhere or do something with you and then last minute it's a no go.)
That's the other thing I hate, I always see things from more than my own point of view...not always a good thing as it causes more hurt sometimes...as you realize there is truth in not being reliable.
Finding the way to deal with the stress of not being able to do things and finding things we can do is the real chalenge for me...accepting migraines and living with them would be easier if we had a big bandage on our head so others would 'see' the problem!
Perhaps a shaved head with a tatooed scar running across it would make it easier?? LOL
mmm, now there's a thought!
Breast cancer has a pink ribbon, what color would our ribbon be? Black? White? how about purple? I say black because we need the darkness, white for the searing white pain and purple for the bruised feelings we end up with from no understanding.
Hang in there and count your good days, good friends and good pain management for those days that aren't so great!
Have a good one, take care,
D
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Untitled Comment
Anonymous
Thursday, May 28, 2009 at 08:43 PMI agree .... there are always adjustments to make ... everything has to be placed in a position so that the head and neck can be aligned. Sounds easy but is very difficult to do 24/7.
I have found that neck problems do indeed exacerbate migraines. Regardless of where you feel the pain ... because the nerves are irritated and that irritation travels and the reaction can be where you least expect it. Also migraines althought once thought to be blood vessel constriction it is now understood that it can also be blood vessel dilation. So I surmise that anything that irritates the blood vessel lining will lead to a migraine. One of the problems in others understanding is the use of the word headache. I have had migraines for over 30 years ... never has one felt like a headache ... it is pain and other symptoms ... nausea, vision disturbances, tightness, jaw pain, dizziness etc. So others try to understand by relating it to their headaches but there is no relation.
One thing that is non drug related that can be preventative in migraines is massage therapy ... not during the migraine only nerve stroking maybe ... if the therapist is experienced he or she will massage the mid back, shoulders, neck and base of the skull which loosens the muscles and therefore prevents one of the migraine triggers. But the therapist cannot have a heavy hand.
there is still so much that is not understood that no one not even md's can say that something definitely does not cause a migraine. you must rely on your own body to tell you and if you listen you'll know for yourself what your personal triggers are.
Unfortunately, even with that understanding you are 100% correct that all we can do is keep adjusting our lives to cope ... sometimes I feel that I have become monotone in my emotions (not too excited and not too low key) ... being optimistic or empathetic for others does help. dwelling on the negative is just stressful. understanding others who have conditions that are worse in many ways does help (except on those days when I just feel like screaming for myself... luckily I cope most of the time).
Good luck to all
trust yourselves
re: Untitled Comment
dlmw_58
Friday, May 29, 2009 at 07:26 AMHi, thank you for the information. I've only gone for one massage and found it so relaxing, actually I felt like my limbs were made of rubber!
My migraines are either behind one eye or one side of the head with auras. The part I hate the most at times is how muddled my brain gets. The simplest of things just don't come easy, and there are days were I can't spell, can't remember the simplest of things...I just get dumb!
Oh well, as I said, there could be worse things and I should be greatful that it's not something that is going to put a time frame on my life...just the quality of it on some days (a lot of freaking days! ;)
Have you tried acupuncture?
...and I've never heard of nerve stroking? What is that?
Take care,
D
re: re: Untitled Comment
Anonymous
Friday, May 29, 2009 at 04:27 PMHi D
I've tried acupuncture but unfortunately I found it irritating. Others that I know have found some relief with it.
Nerve stroking is when a person just very lightly strokes along a nerve route.
Example: gently stroking along the temple with the hair growth. After time the gentle stroke relaxes the area and the pleasure signals reach the brain faster than the pain signals so you feel the nerve relax. Sometimes it can take quite awhile so you need someone with patience and the stroke is barely touching your skin.
I've seen it work on migraines, ms patients, fibromyalgia patients and the like.
Hope you are having a better day today.
Mine has been an uphill battle all day. Maybe tomorrow will be less painful.
Moment by moment.
good luck
Cherie -
Wow
PJones
Friday, May 29, 2009 at 05:14 PMYou took the works right out of my mouth! I love to read, it is my absolute most favorite thing to do, but because of my migraines I am limited to how much time I can spend reading. I also love to watch romantic comedies, but they are often sad and crying is not an option! The worst migraines I have had in my life have come after a good crying spell. I would never wish a migraine on anyone, but sometimes it is nice to know that your not alone. Even though your family and friends may not get it somebody, somewhere understands!!
re: Wow
dlmw_58
Monday, June 01, 2009 at 07:11 AMHi, I'm at a point in life where there are a few people I wouldn't hesitate to give them a migraine or two! I think it would make them a little more 'human'! ;) ...blame the nastiness on ummm,,,, migraines!! and the lack of understanding that we sometimes get.
Hope your having a pain-free day.
D
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yes. i think neck can trigger migraines..
beck
Sunday, May 31, 2009 at 03:08 PMHi
I have had migraines for years, and endured doctors telling me that it was blood vessels, not your neck...well, I have had ones triggered like you have described..and have thought for a long time that certain positions or strains would cause them. Turns out, new research says that nerve fibers in the neck can definitely trigger migraines....but the most important thing is, what to do?
I find that very frequent stretching of the neck, especially forward and side to side can make a difference and keep that tension from creeping up. Also, try an ice/cold pack applied to the back of the neck or the side that is bothering you. Sometimes this can actually head off a migraine, i have found, or at least reduce some of the symptoms. Be very diligent in self-care and don't neglect yourself. I have learned this the hard way, and still have to remid myself of this. Hang in there. Are you taking triptans and NSAIDS at the onset?
re: yes. i think neck can trigger migraines..
dlmw_58
Monday, June 01, 2009 at 07:16 AMRight now I am on celebrex, Premarin (darn hotflashes!) and an antihistamine for alergies and since I'm back on celebrex I'm doing much better with less migraines not to mention that I'm walking a heck of a lot better these days.
I've have degenerated discs in the lower back and some bulging (again, already had surgery to help relieve a pinched nerve in the back).
Who said aging is fun? but then again, I've had some health problems since I was very young...
Lower back, neck, just not in good shape.
Oh well, as they say, c'est la vie!
Hope your having a good day,
D
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I agree too!
tucker317
Friday, June 05, 2009 at 12:23 AMIn the diary I keep for my doctor, I just wrote yesterday that my HA? (since I didn't treat it with Imitrex was it a migraine or part of my chronic daily HA???? Geez, I can't even differentiate that anymore) which came on pretty suddenly and started in my neck and the back of my head and then was all over my head (but no nausea) was triggered by the T-storms which rolled in and stayed for several hours and/or the fact that I had worked almost constantly at the computer for 2 days in a row. (with poor ergonomics nonetheless on a makeshift desk and a comfy but doesn't fit under the said "desk" conference room chair)
I am fortunate that at my "yearly Topamax renewal, maybe increase it too" visit last fall, my doc (PCP) said it was crazy for me to be suffering so much and let's make some changes. (I'm the one who never went back -usually just dealt with things on my own.) Now I go every 6 weeks or so and we try something new (for prevention) until I can find a happy medium between side effects and HA control. He even listened after a few visits when I kept telling him they often started in my neck, so he did some Xrays just to make sure nothing was wrong. Now I have a muscle relaxer to use, which is also helping my TMJ at night.
When he asked at my last visit if I thought I'd do better with a neurologist, I actually said no. Even though I live in a fairly big city, there is not a good HA specialist here in town that I think would do better. Maybe I could get some type of injection in my neck since everything seems to stem from one area but that would be the only thing that I could see as an advantage.
So I can say that while I am tired most of the time from these combos of preventive meds and I sleep way too much; like you, I know things could be much worse. My headaches don't confine me to a dark room every day. I'm not happy about them, but 6 months ago, they were much worse and a year ago even worse than that. And I am ever so grateful that at this time in my life I haven't been given a %age chance to live, or of a cure, or of even going into remission. If you think of the cup half full, even fighting children that give you that afternoon throbbing head can give you a reason to love them if you just peek in on them once they are asleep. :):)
Diane
re: I agree too!
dlmw_58
Friday, June 05, 2009 at 07:56 AMHi Diane, I certainly hope that you find something to help prevent daily headaches. I went through that for a while and I found that taking the pain medication ended up making it worse. I decided to not take anything for pain and 'tough' it out. Ended up on prednisone which ended the headaches, made the old back feel like a brand new one. It's such a 'feel good' medicine but unfortunately they won't let me stay on it, even on a low dose.
Right now I'm finding the celebrex and alergy medication are helping and I use to question all the 'why' is this working, now I just go with the flow and enjoy the break.
I seem to be able to go through stressful times fine, but it's the 'let down' when all seems to level out and the stress level lowers.
Right now I'm babysitting my grandson and I've managed to keep my migraines at bay although I'm still experiencing the auras and some of the other migraine problems but without the head pain - which is fine by me...and your so right, watching a baby sleep is so rewarding and so well worth the time.
I started to pay more attention to my shoulders and if I notice them bunched up around my ears, then it's time to do some stretches and try to relaxe them. I stop and think of what I'm actually thinking or doing that would cause them to get tight and then I look at the problem and see it through to the end...meaning I visually picture the ending result of what's the worst that can happen and what is the least that can happen...basically putting things in perspective...it's helping a lot.
I often wonder if we are more of worry warts than the regular population or what? LOL
Anyhow, hope you are having a migraine free day,
D
re: re: I agree too!
tucker317
Monday, June 08, 2009 at 01:36 AMLOL! We have a 3 section med cabinet (yeah, I know you're not supposed to keep stuff in the bathroom but only hubby shuts the door to shower when I'm sleeping), and he only recently looked in my side with it's 2 shelves! of med bottles. He was shocked - most are HA prevention and treatment, also some for my acidy tummy (had that since college - there is where that stress probably 1st showed up), allergies, asthma, face creams, and the whole vitamin regimen. He asked me if I was running a pharmacy out of the house. I'm sure he's noticed that shoebox in the closet with the lesser used stuff too.....
So you're right. My doc thinks I keep stress inside. I told him I don't FEEL anxious or stressed out every time I have a HA, though for a while I was waking up in the middle of the night with horrid migraines. 2 new nightguards later and new meds, I sleep like a rock at night, though I often wake up with mild HA. But my favorite dentist in this city told me 16 years ago he'd make tons of money putting crowns on my teeth as bad as I grind them. So far 5 nightguards have keep my teeth in place. Too bad he moved or I could prove him wrong.
(Well. just a few chips and shifts and ground down bottom front teeth from the NTI).Even sadder is that I used to do yoga for years. But it's a joke that some folks say I have ADHD and others say I have narcolepsy. I had a great teacher and at the end during the cool down/meditation part, even though she talked us through a relaxation phase, either my mind would be distracted by a hundred other things or I would just fall asleep instantly. So "relaxation" isn't really something my brain does. Even now, I'm either up and doing something or asleep - just like a puppy. Fortunately, I'm housebroken so my family keeps me.
Ah well, somebody has to worry about stuff. Imagine all the folks who don't and live those carefree and fanciful lives. Totally irresponsible and a burden on someone and uh, headache free? Hmmmmmm
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Your message(email) was about the best one I've read. I totally relate. I often can't read or do needlework due to my migraines. And I have stomach issues and more and more foods are having to be dropped. And while not overweight, I find certain foods such a comfort and now those are taken away. I'm told headaches and stomach issued can go hand-in-hand. I am trying to stop eating any wheat(gluten) to see if that helps. You know what I really miss?- saltines
I am going to physical therapy twice a week to see if my neck could be part of the problem but, honestly, I don't think it is. If your headaches are in the back of your head, maybe so. But, mine are almost always across my forehead-that tight band.
Anyway, what you said is true, in that, we need to be grateful things are not worse.
I try to count my blessings and not feel too sorry for myself. I'm thankful for this website because none of my family or friends have headaches like I do. I have to cancel plans at the last minute a lot and I hate that. People try to understand,but.....
Good luck to you.
Kat