10 week migraine - Need Help!

Hi - I am relatively new to migraines. I've had what I used to call "normal" migraines - a little nausea, light sensitivity, pain above my eyes - take an IB profin - go to bed - wake up perfectly normal. And this would only happen about twice a year. It was so mild, I never considered myself to be a migraine sufferer.

But 10 weeks ago, my life came to a complete hault. I had some vertigo in the grocery store. Didn't think too much of it. Then two days later the vertigo came back and hasn't left since. Then a few days later a pain began over my left eye. Several days later light sensitivity and it felt like my left eye was being pushed out. Within the next few weeks the symptoms became more bizarre and downright scary. Blinding pain, burning in my head, tingling and numbness down my face and eyelids. Severe nausea - I've now lost 17lbs. Severe vertigo that landed me in bed for weeks on end. My doctor was at a loss.

After several ER visits, two teams of neurologists and over 130 tests done, including a CT scan and a CT angiogram the diagnosis is status migrainosus - a migraine that lasts more than 72hours. Once we finally had a diagnosis (3 weeks ago) I stayed overnight in the hospital while the neurologists tried to to break the migraine. I had two doses of DHE, IV magnesium, and an oral steroid, and I was sent home. The strong meds broke most of the pain, which now just seems to creep in from time to time. The tingling still comes and goes, the burning comes and goes and now I am dealing with muscle spasms to boot. (I am feeling pretty sure there's a magnesium or potasium deficiency now that there's muscle spasms too, and I have started a calcium/magnesium citrate supplement and eating foods with potasium). The nausea is mostly gone now so I am eating again. The vertigo is not as bad, although still there. So I am improving, but it's slow. I take amitriptyline at night for it now and am currently at 30mg/night, go up 10mg/week until the symptoms leave or reach 100mg/night - whichever comes first.

I think I'm slowly recovering but it is much slower than I would like or expect. I'm no longer completely bedridden. But everday life is hard. I can't drive because of the vertigo. I have lost wages. These symptoms suck and sometimes they scare me. Tonight was particularly bad - leading me to find this forum. My head felt so full - and then the pain started. I was home alone with my kids and was completely immobilized.

Has anyone ever had anything like this? Has anyone ever had status migrainosus? What helped? I'm new to this. I hate it. And I'm desperate for help. My life is on hold until I am functioning again.

Post Edited (HopeForHealing) : 3/28/2012 10:57:24 PM (GMT-6)

I had a refferal to a neuroligist and the waitlist was one year! Crazy. But one of my ER trips ended up getting me seen by a team a neuros and the headache specialist will now be my regular neuro. I was s upposed to see her again in early april, but her office has yet to call to make an appointment (which they said they would do).

I've also been referred to an ENT, but, yet again, have yet to hear from them for an appointment.

I have so many questions - I don't understand at all what is happening to me. Has anyone else ever had vertigo with tingling, numbness and/or burning in their head with no actual pain? The vertigo is dibilitating. The longer I'm up and about the worse it can get. Went through a 2 weeks phase where I couldn't be up for more than 5-10minutes before the vertigo got so bad it felt like I'd pass out. I have never actually passed out, so I think it's just the sensation. I don't know if I can take meds for just these symptoms when there's no actual pain. But just because there`s no pain, does not mean I`m ok or functioning. My head feels full and weird and all the other symptoms are making daily life a struggle.

I also wonder what brings on something like this? 10 weeks ago my life was normal with no real migraine activity. How does a body go from normal to THIS overnight?

Thanks catrina78 - if it's rebound headaches - then what are those? I don't take anything for the pian anymore - figured the meds were just making things worse. I don't even take IB profin anymore. I just deal with it.

Do people typically get vertigo and burning/tingling/numbness with rebound headaches? Many times I have no pain, just the other symptoms. Pain comes and goes. Sometimes minutes in between, sometimes days in between.

The pain is not what I find the most dibilitating - it's the vertigo and weird sensations in my head - feels like my head gets full. It's a horrible sensation.

Thank you for explaining that. I feel like I'm the only person who has ever had such weird symptoms. Because I had seen the neuro team in the ER twice, I got into the headache specialist and now have an appointment for a couple weeks time.

Are there any meds that work for neurological migraines? I rarely have any relief from these symptoms and thought if I can go into the specialist a little educated on what works for others maybe it will help me.

Hi iv been suffering with the same symtoms iv just got back from the hospital he said it sounds like reocuring migraines but iv got to have a brain scan just to make sure nothing else is going on... Iv had it for 5 weeks now constantly dizzy and. Light headed with sharp stabbing pains in my head and like a pressure, tingling and burning in my head fingers crossed they will sort me out :)