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Nancy Harris Bonk
Saturday, June 20, 2009 at 08:32 PM -
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c
Thursday, July 09, 2009 at 03:51 PMHi
I feel your pain ... I too suffered for nearly thirty years without a proper diagnoses .. I would get home from work and just lie on my bed staring at the ceiling, crying and begging for the pain to stop ... migraines are not headaches ... there are so many manifestations ... I have finally been diagnosed - migraines, fibromyalgia, arthritis and herniated disc in my neck and then 5 years ago chronic regional pain syndrome after a hand injury.
The major problem is that no one has a definitive answer to just what causes migraines ... they know different triggers but not why we have them to begin with ... I have a lot of trouble with the various medications ... I find most people with fibro do ... I'm at the point of being afraid to try anything new because I can't deal with the side effects .. and I am tired of getting my hopes up and then being squashed ... I am presently on disability and very grateful for it ... but I am beyond tired of trying to explain to everyone including doctors what I feel and why I can't do things ... I also get the vision problems ... sometimes just a kaleidescope but others total double vision.
This week is a bad migraine week ... in fact I've only been on the computer for 10 minutes but have to finish this and then take another maxalt and just sit on the couch watch tv (may try my sunglasses as annoying as they can be) and do nothing ... this I hate because I can't even read or do puzzles ... frustrating ... I keep telling myself there are others that are worse off, a lot of days this helps me get past the woe is me syndrome ... but today it is not working too well ...
just have to hold on till this subsides again ...
Good luck to you.
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Dogmom
Friday, July 10, 2009 at 09:02 AMWow, thank you for your comment it makes me feel better that there are people out there like myself. My disability is up for review and my doctor wrote a letter for me. I wanted to do so much with my life and simply cannot because of the severe symptoms of migraines.
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Untitled Comment
rockin' girl
Thursday, July 09, 2009 at 06:25 PMDear Patrice & all of us who are a part of this pain together,
Your words resonate so much w/me at this moment. Thank you for expressing all that you did as for a moment it is reminding me as i sit slumped over in pain yet so desperately holding onto the power of hope, human connection and faith, I'm not alone. And that may not take away my throbbing pain which has been non-stop for months, it does nourish me and us all, I suspect, on an emotional & spiritual level. We're in this boat together.
May i ask if any of you have done the dhe iv 3 day hospitalization for chronic, intractable migraines? my neuro is trying to admit, after having sent me to the er a couple of times, to attempt to get me addmmited & treat me this way, yet it has fell through. and now we ironically found out our doc is 'out of network' which means huge costs would be incurred if i'm admitted (we're military). we're meeting w/my primary doc tomorrow...i'm trying to hold out going to er again to just have pain masked & to yet again have to set up a comfortable place for our daughter so she doesn't have to go - thank goodness she has been so patient in all of this. she's 10 and she gets what you conveyed Patrice, on some level...yesterday, in her loving, intuitive way she said: "mom, you have a disease which hasn't been identified and I'm scared there's no solution".
i've had numerous scans, emg, evoked potential, doppler ultasound (where it indicated i had some narrowing of carotid artery, 40-60%; mild stenosis, yet my neuro doc says my mra said all checked out so he doesn't think we need to worry about that...i tried topomax 2xs yet couldn't take it long enough due to side effects and took cymbalta yet was on oxycodone and muscle relaxants at same time and had some weird effects so he said to stop cymbalta (note: my pain doc is prescribing the pain meds - have taken for 1 month, then ultram eq and now back to oxycodone - yet no relief). i'm hesitant to do the dhe iv hospitalization and potential spinal tap as i've read about some troubling things re: taking it...one person ended up w/a stroke yet some have had their migraines stop. my doc indicated i could get better and then have a rebound effect. i'm at a point where i always have pain, never stops and do not sleep well, even w/ambien er...so i'm considering it.
What are your thoughts? any experience? are you seeing a regular neuro doc.? he hasn't had me try imitrex yet i've heard so much about it.
blessings to you all!
praying and hoping for resolution for myself and for you all
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Dogmom
Friday, July 10, 2009 at 09:05 AMFirst of all I wouldn't allow myself to be put into the hospital to be a petri dish for a doctors experiment for drugs. Im on enought meds and until they find a cure I will stick with what is simply okay for now for me.
re: Untitled Comment
Anonymous
Saturday, July 11, 2009 at 12:41 PMYou asked about DHE. I've had DHE numerous times. The first time I was hospitalized with my migraines, they gave me the DHE45. While they were giving the injection via IV I literally fell asleep. It did make a difference the first time they gave it to me. The second time that I was hospitalized they again gave me the Reglan and DHE45 via IV. It helped but not as much as the first time. After being in the hospital twice with the migraines and the only medication that was even close to bringing relief was the DHE45 they gave me a script and taught me to give myself Sub Q injections of the medication. I did that for close to a year and then I did go to a Headache specialist at the Cleveland Clinic and they did 9 days for a Sub Q Pain pump with the DHE 45. I didn't have as much success as I would of liked to have had. I have since given up on the DHE because after the 9 days of pump wearing I was no better. There are alternatives on the DHE (i.e. the pain pump, or doing sub q injections) which are out of the hospital but I think the best treatment I had with the DHE was when it was given via the IV. It worked rather quickly, at least for me the first go round. I didn't get rid of the migraine but it did make is much less.
I have the daily intractable headaches along with 5-6 migraines a week some times every day but I was NOT inpressed with the migraine specialist that I had gone to and I have gone to several.
I try to deal with the pain as it comes, it's not fun but all of the medications I've been given if they work it's only for a short period of time. I try to just push through everyday as best I can. There are days I would love to just cut my head off and send it out for a new one but I'm stuck with what I have.
I hope that is of some help. Just remember when you get the DHE 45 via the IV you may want them to give you something for nausea (i.e. reglan or something similar) because you do get nauseated from it. Doing the sub Q I didn't get the nausea as bad.
I wish everyone well, migraines are no fun and I don't wish them on anyone.
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Sure hate migraines!
grammybkb
Thursday, July 09, 2009 at 06:27 PMI'm waiting for the right med to work for me. Like you Patrice, I have had migraines well more than half my life. I took so much asprin when I was younger that my stomach cannot tolerate it now. I've been on what seems to me, a billion different meds, and none have worked even remotely except for the rescue meds...Relpax, a drug that surely the angels must have had a hand in... I see a migraine specialist in Milwaukee, and she's very good. It's still frustrating though. I watch my diet and avoid those food triggers, try getting the same amount of sleep every night, keep stress to a minimum (ha!), you know, all the usual things we do, and still, I get migraines. Fortunately, I have a great husband, and family and friends who know just how dibilitating migraines are, and they look out for me. I'm on day 3 of a migraine cycle right now, and anticipate at least 3 more days before I get a break. I haven't gone more than 2 weeks without a migraine in years, and when I hit a week without one, it feels like a vacation. I get frustrated with the fact that my life revolves around headaches, but I try to remember that they are just one aspect of my life, and I live for the moments without them. Hang in there. See if your insurance covers botox, mine won't so I'm saving my money to see if that will give me some relief. And yeah, I feel like a guinea pig sometimes with the meds. At least my dr. get migraines so she understands what we go through. This message is somewhat disjointed, but you know how rescue meds scramble your brains. Just wanted you to know you are not alone. We have had so much pain in our lives that we can get through anything. Blessings to you.
Something I've never read about
Karen L
Thursday, July 09, 2009 at 08:50 PMMy story is very similar to all of yours. To top it all off, I've cost my insurance company - BCBS - so much that two years ago, they decided they knew what was better for me than my migraine specialist and now will only cover one prescription of one triptan per month. I can barely afford the Relpax with insurance, so I can't consider paying out-of-pocket for more even though my doc would let me. Anyhow, I've always been quite certain that many of my migraines stem from my neck and shoulder muscles. They are so stiff and taunt they're like guitar strings - no muscle relaxant has ever helped. I found this therapist who invented a robotic arm that works to lengthen muscles, as opposed to stretching them (like you might do after you exercise). He developed this machine with gov't grants so he had to prove that he could, in fact, actually lengthen the muscle. I've been to him twice now and have not had the tension type headaches that would usually lead to migraine go away. I'm working very hard on my posture as this greatly affects those muscles. I still have a dull, nauseating pain up the back of my neck to the top of my head which he said comes from the cranial vagas nerve that goes up the back of my neck. Hopefully, I will get some relief there.
I bring this up because I've never read/heard/learned about the extent of the neck muscles effect on migraines until I met him. It all makes so much sense to me. Now, my problem is complicated and I don't expect this to "cure" me but it does seem to be helping. Check out his website but know that it doesn't do the work they do there justice. Call them and talk to them at length (which they will do). He and his whole staff all suffer from chronic migraines which is key for me. I know people come see him from all over the country. It's another avenue to try if you're interested. The website is www.meilus.com.
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Migraines and The Brain
Dogmom
Friday, July 10, 2009 at 09:11 AMI see from many replies that people have been through many various treatments in hope of curing their migraines. There is no cure as of yet. And for myself I will not be a doctors experiment any further unless they find a cure. When it comes to matters of the brain we as humans do not know all we need to know about it and migraines do have an effect on the brain and we have an idea what but we really don't know to what extent and to put more further drugs into our bodies to possibly do more damage while finding and hoping for a cure at the expense of our health and possibly our minds. Im tired of the doctors throwing pills at me and i've been to psychiatrists, chiropractors, neurologists, etc.
re: Migraines and The Brain
Teri Robert
Friday, July 10, 2009 at 10:03 AMI have to ask -- have you been to an actual Migraine specialist? It's important to note that neurologists amd pain management specialists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
It goes without saying that it's your choice whether you keep trying to find treatment that works for you, but realistically, there will not be a cure in our lifetimes. To the topic of this SharePost, research. Until the NIH starts funding the basic research into Migraine disease and the brains of Migraineurs, we're never going to have the kind of treatments we need, let alone a cure. 12% of the American population has Migraine disease, yet less that 1/10 of 1% of NIH funding goes to research of Migraine and other headache disorders.
Teri
re: re: Migraines and The Brain
marinequeen
Monday, July 13, 2009 at 11:49 AMTeri,
I have to marginally agree with Dogmom but I have been to two migraine specialists among many other doctors. I have been to a Headache Clinic where one time I was made to sit for two hours before I could see the doctor for 10 minutes. When I finally saw the doctor without my knowledge he called in about 6 fellows. No one could give an explanation for the strange pain on the top of my head. It was diagnosed as idiopathic. I paid $1000. out of pocket for botox which did not help. I found a different migraine specialist who diaganosed that idiopathic pain as hemicrania continuum (continuous headache which is seperate from my migraines) and prescribed medication that helps. So far no medication really prevents my migraines. I have tried many but am willing to try more. I am now on my 17th different doctor so I know how Dogmom feels. I am still in pain almost every day and have a migraine at least 2 or 3 days a week. Like you said until the government sees migraines as a disease and invests money in its cure, there will be no cure.
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massage
c
Friday, July 10, 2009 at 10:35 AMThere is one therapy that does work and has no side effects ... Massage Therapy ...
you have to find a therapist that is a Medical Massage Therapist ... by massaging the neck and shoulders they relax the muscles which in turn stops the muscles from pinching the nerves and also they don't pull on the muscles at the base of the skull ... it is not a cure ... as we all know there are many reasons for migraines to rear their ugly head ... but the massage does help.
Also a couple of over the counter supplements that may help some ... "Estroven" this seems to help when the hormones are triggering ... "HeadacheFree" this is a supplement with various vitamins and magnesium (which I've been told that magnesium levels are related to migraines) ...
Again these are not miracle solutions ... but do seem to help with the severity of symptoms ... (except of course for those days when the migraine has a hold and refuses to let go under any circumstances ... then it's just tie a knot, take a maxalt maybe muscle relaxant, find a position that keeps the spine straight, and stare at the ceiling and wait, and wait and wait)
today my right hand (crps) and migraine are battling for lead position ..
so I've tied the knot and am holding tight ...
Good Luck All!
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Hello, and welcome to MyMigraineConnection.com!
You are right, we do need more research and public awareness about Migraine disease. We work hard here to do just that! The Alliance for Headache Disorders Advocacy(AHDA) is dedicated to advocacy efforts that will hopefully result in better treatment for Migraineurs and people who suffer with other headache disorders. Their website can be found HERE.
I see you have been to many doctors. The one you haven't mentioned may be the most important one - a Migraine specialist. Seeing as your current doctors aren't able to help you, it may be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
There are now over 100 medications and supplements that can be used for Migraine and headache prevention. The frustration of trying to find what works for us can make it seem as if we've tried it all, but with so many possible preventives, it's literally impossible to have tried them all. See Migraine preventive medications - too many options to give up! for more information.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.
If you have any questions, please feel free to post them to the forum or send me a message through my profile.
Welcome again,
Nancy BonkMyMigraineConnection.com Expert