I'm new, here is my story

Hi everyone, this is the first time I've used a forum, I have been at the end of my rope for a while and figured I'd give it a try. I am 24 years old, I got my first migraine at 6 and had them chronically after that but they were manageable until about 2 years ago. I am in moderate pain almost all the time that fluctuates to severe pain several times a month. I haven't been able to work much less leave the house very often since it has gotten so bad.

I frequently get visual disturbances, and numbness in my arm and leg in one side of my body when it gets really bad. I always get the usual light sensitivity and nausea too. I have also had a couple seizure-like episodes that involved uncontrollable rapid eye movement, confusion and speech slur. I have noticed memory problems and generally feeling like I cannot function mentally a lot since it has gotten bad which i never had before the last couple of years. I also get severe neck pain at times and have had several trigger point injections that occasionally give me temporary relief from the neck pain.

I do notice that being cold, and sometimes storms can trigger worsening pain. I have tried tracking my diet and making changes without any success, and have been unable to identify any other triggers for the majority of my migraines.

I have tried every migraine med known to man, without any relief and sometimes causing worsening of migraines. Also tried calcium channel and beta blockers, antiseizure meds, heart meds, herbal remedies, antifungal meds, altitude sickness meds, b12 shots and kenalog shots and probably more I cannot think of at the moment to no avail. I have had 2 MRIs that show no abnormalities, an echo to check for a PFO, and lots of blood work that all came back normal.

The only test that has shown any abnormality is a thyroid uptake scan, I will be seeing an endocrinologist in a couple weeks, however my thyroid labs were all normal but scans show several nodules so I will see if that goes anywhere. My doc is also considering botox injs but first wants to see where the thyroid issues take us so if anyone has had any success with that I would appreciated any feedback.

I just wanted to get my story out there since I have tried all the obvious and some not so obvious options without relief and see if anyone has suggestions. I'm at that point where I will try just about anything as I'm sure most of you are. Thanks for listening and I appreciate any feed back and wish you all the best.

Hi Scarborough,

Unfortunately your story sounds familiar. Most of us seem to be dealing with chronic daily migraine or persistent headache. And we too have been through a slew of meds that didnt work and/or made even worse side effects.

At present I'm taking vitamin D, magnesium, and progesterone that has significantly lowered the frequency and severity of headaches for me. From 80% headache days down to 20%, which has really helped with quality of life. I've also recently started on a thyroid supplement (I also have a nodule and hypothyroidism), but it is too soon to tell if it will help with the headaches. At least I'm not as fatigued.

I hope your doctor is able to come up with something.

scarbrough, this is just to welcome you, and say we're sorry you have to be here. i've found this forum invaluable for the past 14 years now. you'll get lots of ideas, experiences, and time to just vent your frustrations. we all know there are many of those!

i haven't any wonderful new ideas for you, but my one question is: have you seen neurologist(s)? many of them are total jerks, and clueless about migraine, but if you have the opportunity to consult more than one, perhaps you'll find one who will actually care enough to pursue the reasons for your symptomology.

we are a complicated bunch of folks, with complex medical problems. personally, i've tried so many drugs i've lost count, and also countless "alternative" and mostly very expensive treatments, with no good results.

but i kept on seeking, and now do have a less painful life, with the triptan drugs and a few others to help me sleep because, for me, sleep is the all-important key to feeling human.

best of luck to you. dianne

Thanks for the replies.

I have not been to a neuro yet, I live in a very small town where there are no specialists so I have to travel to see any and the only neuro in the nearest city can no longer treat women due to some inappropriate behavior (yikes) and I haven't looked in to others further away yet, but that is something I plan on doing. I don't know why but I have always felt like that will just be another dead end because no tests have shown anything, and, from a lot of posts about neuros it probably will be, but I am going to try anyway.

I am glad to have found this place so I can feel not so isolated and look forward to talking to more people who get it. Thanks

Hi, I am Nick from USA just join this community need your welcome hope that i ll gain so much from here



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Hi scarbrough987, welcome to the forum.
I think you and I have extremely similar cases and I just want to let you know that there are people here for you when doctors and other people are being stupid.

here's some of my story, hopefully give you some ideas:
I got diagnosed with confusional migraine last august. It's a subtype of hemiplegic migraines, migraine accompanied by one side of the body going numb/becoming paralyzed altogether. I had gone through an MRI, a 48 hour EEG, and a lot of other stuff without anything coming up abnormal. After months, my neuro finally came to the conclusion that I had these migraines. It took me three years of searching for that diagnosis, but the meds worked like a charm. (topomax, 50mg 2x a day)

From what I understood you haven't been diagnosed with any specific type of migraine, so this might be useful to you. There is not a while lot out there about hemiplegic migraines but I think it might be worthwhile for you to investigate on your own, then go to a neuro when you get the chance and say ,"hey, is this a possibilty?"

Good luck to you, you can PM me anytime. I live around the world from most of you so I might take awhile to get back to you, but I'll do my best.

I don't think that my multi-nodular goiter has anything to do with my migraines. I do not take any thyroid meds.

Hello and welcome, sorry you've got this too.

Your story sounds familiar and for me they are finally looking in the direction of thyroid issues but I am on waiting lists after 7 years of looking at other things. (UK NHS now as had to stop paying into health plan when left union when I had to stop work).

I notice that some people think that there is a link with these conditions and that it might be of use to some of us, so I am keeping up hope.

Sorry I don't have any helpful advice for now but if I find anything, I will let you know.

regards

Di