Intractable Migraines and Me.

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Date Joined Jul 2013
Total Posts : 1
   Posted 7/17/2013 1:51 AM (GMT -6)   
This will be looooooong.

I had my first migraine around age 13 (1995) from a ummm....orgasm..self...brought *cough*. I was taken to the ER where they gave me Demerol and I stayed home from school with residual pain for 2 days. From that point on I would get them here and there - maybe once a month, than 2 in a week, and not another for 5 months. I never had had an aura, just throbbing pain that sat everywhere a helmet would (this is still pretty typical of my migraines).

I started getting 1-2 migraines each week about halfway through my first pregnancy which would have been early 2012. The week before I had my daughter in June of 2012 I started getting mild-medium grade migraines 4-5 times a week and was prescribed Roxicet and was admitted to the maternity ward ER twice and was given IV Dilaudid.

The minute I actually gave birth to my daughter (after 24 hours of labor, 4 of which were hard) I had the worst migraine I have ever had as well as back pain that I had never had before. The nurse gave me two Tylenol 3 which did nothing. I also had a fever due to my water being broken early in labor and I had a spinal catheter due to a misplaced epidural which punctured my dura and I needed a blood patch. All of this may or may not be related.

So for 2 weeks post birth I had spinal headaches from the CSF leak and an ongoing (now I know - intractable) migraine layered over top which complicated things. To really make all of this fun I have a past history of Bipolar Disorder and Anxiety Disorder. I was not on any medications throughout my pregnancy. I ended up having severe post partum depression and psychosis. I was placed on Zoloft which made me manic and ultimately landed me in a psychiatric hospital (for the first time in my life) due to self-injurious behaviors, and suicidal and homicidal ideation (about the baby - now 2 months old).

I continued to have daily or near daily - let's say 6-7 per week - migraines. I guess I would say now that they were simply ongoing and I just couldn't really put it into words before. I was placed on Neurontin 800mg per day which was supposed to help my back pain, migraines, anxiety, and bipolar-ness. What a miracle drug. It did nothing other than the time I took all 800mg at once instead of in the AM and PM at which point I was incoherent.

I was placed on Inderal, Cymbalta, Lyrica, Ativan, Lamictal, Maxalt as needed, Migranal as needed, Compazine as needed, Zofran as needed, Vicodin as needed, and Ambien as needed in the mean time (and tried on a number of medications - I am still on the above as of today). I also use the Nuva-ring for birth control. I have been told that nearly all of my daily medications SHOULD help with migraines and I must say my chronic body pains and aches and migraines are much much worse when I forget to take my AM and PM pills. I was given occiptal shots of steroids by my pain management doctor who, when I told him they didn't work, shrugged and said "Well, I've done all I can."

I had an MRI (clear) and an Intracranial Pressure Study which sounds much fancier than it is and found nothing. I have never had auras and my only known trigger is smoke and really chemically junk food like those delicious mini-muffins that I cant eat unless I want to curl up and cry.

I was in the ER for migraines twice per month until I saw a neurologist in January who had me do a 3 day IV infusion which was a cocktail of steroids and benzodiazepines and migraine medication and Depakote. They say it is supposed to reset the migraine cycle and I must say it worked like magic. For maybe 3 months I was down to 4-5 migraines a week and they weren't nearly as severe.

I was diagnosed with Fibromyalgia and Myofacial Pain Syndrome as well as IBS and Degenerative Disc Disease in my lower back around this time as well. I felt like my whole body was breaking down. Everyone said it was hormones and it would take at least a year till I felt like "me" again. My daughter is now 13 months old and I hate to say I was watching the calendar like day 365 since her birth and I would be fixed, but, well, obviously not.

I have had my current migraine since the 5th and went to the ER last Sunday. My neurologist wants to change my Inderal to Zonegran, but it looks like my insurance doesn't cover it so we will probably be going with Topamax. I am scheduled for another three days of IV infusion this coming Monday - Wednesday. I have already had two series of Botox shots with some success the first session (3-4 migraines per week) and no success with this second set (see: current migraine).

So that is pretty much everything. I have a neurologist, a regular family doctor, a therapist, a psychiatrist, a psych nurse, a rheumatologist, and a pain management doctor. I am tired. It's been a long year. Every time I feel like I am getting better it just seems to get worse again. I am 30 years old and I don't want to be in pain everyday anymore. This is sucky stuff. Thanks for listening. Let me know if you have any thoughts or have had similar issues. I feel so overwhelmed these days. *sigh*
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