Thought I'd introduce myself at the same time. I'm a 37 year old female. I was diagnosed in 2005 with complex partial seizures, have a VNS implant for them because they are intractable. I have had migraines since I was a teenager though only once in a while. My mother, sisters, and grandmother all have/had migraines but mine seem to not want to be managable. I've been hospitalized 3 times since April for status migraines.
I'm on propanolol, have Treximet, and Sumavel Dosepro along with 7.5/500 Lortab for the seizures. I just can't ever seem to get a complete hold on them. I live in a state of pain, sometimes manageable and sometimes not. I'm a mom and a wife and feel like I don't participate the way I used to or want to due to either seizures or, more frequently, migraines.
I try to go without taking the meds but I walk a fine line of either not taking them and ending up out of control and worrying that I'm not taking then enough. I'm so tired of hurting. I constantly have a headache it's just a matter of whether I can deal or whether I need to curl up without anyone in the room, covers over my head, no food or drink. I sometimes linger in between these two stages.
My right side of my head is the one that my migraine is on usually so the back side of my head burns always. I can't lay it on my pillow on the right side. I don't wear head bands, I had all my hair cut off because it was hurting, as strange as that sounds. My head is constantly in overdrive nervewise on the right side. Even the sensations like hearing and touch are different from about my ear down to my neck and shoulder and now into my arm.
I just went through my second round of botox last week. I'm really hoping it helps me participate in life.
Does this seem possible, that the nerves and all are so damaged from the multiple migraines that they will always hurt and be sensitive now, even without the migraine? Is there anything else we can do so I don't hurt? At this point seizures seem so minimal compared to the constant pain and it's sad to say that.
I was just cruising on here, reading posts. Was diagnosed Monday with a.m. Neuro referred me to a head pain specialist. First available appointment is July, 2011. Just wanted to say hi and I hope you find some peace and pain free days.
I don't know a lot about your condition, but I just had a couple of questions: Have you ever tried Tegretol for the nerve pain? I was certain mine was trigeminal neuralgia, but he said a.m. He said the Tegretol would help, because I also have peripheral nerve hyperexcitability syndrome. I also take 100 mg nortriptyline for twitching. My sister has Graves disease, fibromyalgia and facial nerve pain. She is on tegretol and lyrica, really high doses, every 4 hours. But she thinks she has finally found her "cocktail" that works for her pain.
This may all be stuff you've already tried, but just thought I'd throw them out there. I am also a mom, 43, with 2 boys, 17 and 9. I can relate so well to when the bad days are really bad. I hate the days I have to stay in bed. I feel like they are wasted days that I will never get back. But it has made me have more empathy for others who are in pain. I really hope you get some relief. If I can help in any way, please let me know.
I am on Tegretol, KeppraXR, Lyrica, Propanolol, etc. etc. Geez! You should see me whip out my paper when someone at a hospital or dr office asks what meds I'm on. They tried switching me from Lyrica to Vimpat but that set off a whole storm of pain, pain like I've never felt & I've had kids! :) Needless to say we put me back on Lyrica.
Do you mind me showing my lack of knowledge and asking what a.m. is?
I keep feeling like maybe there is something that would connect the seizures and migraines other than the fact that they tend to occur together. I have other little things that either are or are not related that just bug me. Oh well!
AM is just atypical migraine. I had "regular" migraines since my teens. Start with the aura, like a blind spot, sensitive to light, sounds, then pain, sometimes unbearable. After they passed, the place where the pain had been was sore. It was a lot of pressure if I bent down for about two days after. They usually only came a few times a year, after a severely stressful event. Then they started coming with every menstrual cycle. I would have 3 or 4 in the week of my cycle, then none, then start right back. The closer I came to 40, the worse they became. I always just took Imitrex, or went to the er if it was a really bad one and couldn't get to my regular doc. If I saw her she'd give me a shot and it would help a little.
Now I have something that occurs every single day. Some I only have to take meds once or twice a day, others it is every 3 or 4 hours. It is a sharp stab in my cheek. It also builds and builds til the pain is just unbearable. Then it travels to my ear, temple, skull, jaw, teeth, on the left side. I have numbness and tingling on that side in my hand, sharp stabs in my ankle and my left foot goes numb and I can't make it move. It also has a sensation of feeling frozen and/or wet. I also have the stabs on my back right shoulder blade. I kept asking my husband if I was getting stung. Lately I keep asking him if my back is wet. He says nothing is there. Also I have stuffy nose and watery eyes. I know that sounds simple but I only have it until the pain stops. Then they go away.
The doc on Monday said atypical migraine can cause all of these symptoms and I need to see the pain specialist. From what I understand, he is supposed to be one of the best. I don't know where you live but his name is Dr. Couch and he is at OU Medical Center in Oklahoma City. It's so hard to see him because all of his new patient appt are for 1 hour, min. And people come from all over, other states, etc. I think he is a little bit older and just will not give up until he finds what is causing your pain or at least how to manage it.
Might give him a shot. Hope you get answers very soon!
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