10 week migraine - Need Help!

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HopeForHealing
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 3/28/2012 9:02 PM (GMT -6)   
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)


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/29/2012 1:35 AM (GMT -6)   
Sounds like you are having a rebound migraine. You need to get a refferral from your pcp to have a regular neurologist.
Also have an ENT look at you in regards of the vertigo. I remember one time I had an inner ear infection a couple years ago that caused vertigo, but I had a migraine at the same time, so it masked the ear pain.

In the mean time write down everything you eat and drink, medication you take, and when a migraine comes and goes away and how it feels
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

HopeForHealing
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 3/29/2012 8:30 AM (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?

catrina78
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/29/2012 12:35 PM (GMT -6)   
I agree sounds like rebound headaches. Migraines dont last that long. If ibuprofen has helped in the past and doesnt anymore then stop taking it, will take a miserable toll on your stomach. Gave myself an ulcer that way

HopeForHealing
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 3/29/2012 12:44 PM (GMT -6)   
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.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 4/4/2012 11:57 PM (GMT -6)   
Rebound migraines - a migraine that goes for like even a few minutes, but comes back. The other symptoms - Yes, when i have my neurological migraines. Try a neurologist. Teaching hospitals are faster than a year to get in with :p
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

HopeForHealing
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 4/5/2012 10:19 AM (GMT -6)   
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.

JEANNIUS
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/16/2012 6:04 AM (GMT -6)   
I can't begin to tell you how helpful I found this page and your email on Migraine. For two years I've been suffering, exactly the same symptoms, they now last in the region of 2 or more weeks, started with just a couple of days. Consultant insisted it was my sinus's and operated, which in fact has made matters worse, as well as the whole head pain, face, right eye, I now get acute pain in the nose, and can't wear my glasses.
Thought it was all to do with the menopause, then a fall I'd had, and have had to take so much time off work with it, and I genuinely love my job.
The pain is so great on times, I can't lay my head on a pillow at night.
I too am now on Amtriptyline 20mg a night, and it is helping.

babycakes88
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/16/2012 9:15 AM (GMT -6)   
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 :)

Saynne
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/21/2012 10:24 AM (GMT -6)   
Hello all,
My wife found this forum for me and i am so glad she did. And let me tell I don't feel like I am crazy anymore. Most all of the symptoms that you folks are describing is exactly what I have been dealing with for more than a week now with the exception of the numbness and tingling is on my left side. And like JEANNIUS I love my job as well. I have two little boys and a wonderful wife but this condition is a real pain in the butt. I haven't been able to or enjoy my family. But it is reassuring that I am not the only one who is dealing with this. Praying for all.
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