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Migraine or something more sinister?...

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Unread 04-25-2012, 12:11 PM   #1
dmplaura
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Default Migraine or something more sinister?...

Ugh, I need help/opinions! I'm a bit freaked out about what I've been going through now for a couple weeks...

I had been waking up again with left side headaches each morning (I had my Optic Neuritis attack in the left eye, for a bit of background). I kept working with them, and this has been happening since my O.N. attack consistently for about a month and a half now (the O.N. attack happened end of Sept./beginning of Oct).

Most times, the headaches were gone a few hours after waking up, but as the work week went on, they intensified. Then, after my regular 2 days off (which I generally spend running around doing grocery, chores, etc etc, away from looking at a computer/television in other words) the morning headaches wouldn't be as bad going in to the beginning of a new work week. Again, however, the cycle would repeat.

Fast forward to last Friday. I woke up with a vicious headache that didn't leave. I worked none the less, I had numbness down my left side, pins and needless, cold feeling all in my arm/hand on that side... so I called in sick Saturday (with an even worse headache), and didn't improve Sunday. Monday, went to my GP, she thought this was migraine I was going through (fair enough, I've been a life long migraine sufferer). Prescribed me Maxalt (not sure if it's the same name in the USA). I had an adverse reaction to it, the bold listed side effects that say "Stop taking if you experience this and talk to your doctor". So I only took 1 dose which made me feel even worse than before (intensified the headache/migraine). Notably, it made me feel like I had lockjaw.

As of today, my doctor has me in limbo, work has me back on short term disability, and I'm freaking out about the level of pain I'm in!

Is this truly a migraine? Has anyone experienced an ongoing migraine for weeks at a time?

This is not only pain, but also very unusual sensations. My smells are intensified (only certain things though). My bridge of my nose/under my eyes (more left side than right, though both can feel the sensation) feel like they have a band over them/cold/tightness. The back of my neck feels like a cold flush is going through it. My cheeks feel like they're crawling. If not that, anything brushing against the skin feels 'unusual' (numb, but almost like a hyper-sensitivity to soft - my hair will feel like satin touching the skin, not a painful sensation, just a 'not right' sensation).

Does this sound familiar to anyone? I can go through a period of hours when I'm okay (the pain's low, barely noticeable), then BAM, smacked upside the head, literally, with all this pain.

I also 'think' I'm seeing a blue dot flash in my vision at times, and noticed lots of dots/spots in my vision today (not floaters, more like sparkling black dots coming and going).

A lot of it does seem migraine-y, but at the same time I don't know if I can truly call this a migraine, or if it's the MS flared up.

Can anyone relate? Sorry for the long post, as many of you know it's tough to explain what we're 'feeling' in our bodies.
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Unread 04-25-2012, 12:22 PM   #2
SallyC
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Aww Laura, it does sound migrainy, bot it could also be a tumour of worse. Please have it checked out and let us know how you are,

BTW welcome back, I missed you..
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Unread 04-25-2012, 12:34 PM   #3
ANNagain
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Hi Laura,

I don't know what specifically this is but it does sound very MS-y. The bands and the paresthesias and the pain and you history of ON and TN.

We share those and the "lockjaw" that you mentioned. I had that for about a year and literally had to use my fingers to open my mouth in the mornings. I never found out what it was- just went away like it came.

The only suggestion I have is to MAKE A LOUDER NOISE so your providers hear it and get this some attention before the weekend!

Best to you.
Hi Sally!
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Unread 04-26-2012, 06:23 AM   #4
Dejibo
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ME ME ME !!!

I had bad ON in December in both eyes, and went blind. I have had rotating headaches ever since.

I get visual migraines first (like someone came out of nowhere and took a huge flash photo of me, then sent me from the bright sunny yard, into the dark house.) its awful! cant use electronics to read, watch TV, or even read paper books.

Next is an actual migraine. one sided head pain, nausea, cant think, cant function, just want to lay down and cover my head.

followed finally by a tension headache.

Now I dont have a headache 24 hours a day. Most days I wake up and say Hurray! no headache! then...I lift my head and let the games begin. Will have a visual migraine for about 2 to 3 hours (15 minutes in normal for most folks) then I get a break for about an hour or two and an actual migraine will begin. ( i swear, they are cluster head aches, not migraines) and after I finally get it calmed My head and neck are so tight from holding them in strange positions to find releif, that a tension headache will take over. This rotates from day to day to day.

Neuro says its migraines, and cluster headaches. If you are worried. Look in the mirror. SMILE. nice and big. Are both sides of your mouth curled up the same? frown, the same? squeeze your eyes tight shut. pull up on your eye brow. Can you force that eye open? squeeze a ball or a rolled up cloth. Does it feel the same on both sides?

Please see your neuro. There are meds they can give you to prevent migraines in the first place if you are having more than 3 per week. My neuro said they can be triggered from meds, foods, having your hair in a pony tail too tight for too long, or stress. Im still trying to find the right meds for me.

btw, he said this type of cycle is common after a bad case of ON. it takes time for the optic nerve to heal, and the brain can go into electrical storms to try to heal itself.
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Unread 04-26-2012, 07:47 AM   #5
dmplaura
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Thank you for the support all, and thank you for the welcome back I've been super busy and, as you've read, not feeling so well.

Dej, thanks a TON for sharing all that. It makes a lot of sense about the ON attack/headaches following. Perhaps you're right (and your doctor was right) about the healing taking time. I feel like they rushed me back into a stressful work environment which partially reversed what healing I was in following the initial ON attack.

I'm definitely going to get examined again, and I'm off until they can not only calm down the current pain situation, but also find a prevention 'method' going forward.

Spoke to Mom last night who explained how grandma got vicious migraines for weeks at a time. I take after grandma in many 'aspects' of health, so this news was comforting in a sense that, grandma went through the same type of pattern of headaches/migraines, so it's not new to the family.

Now time for some rest and healing. Hope you've all been well. xoxo
__________________
2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Unread 04-29-2012, 09:46 PM   #6
dmplaura
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Woohoo!!!

After a week+ of this, today's been a major breakthrough for me.

I woke up without a crushing headache (first good sign!), more of a 'picking in the background' pain. My upper lip felt like it had taken a shot of novacaine, and I noticed disorientation until this evening (after supper, 7-8 pm).

This disorientation was very odd, but something I know I've posted about here before. Alice in Wonderland syndrome. I kinda suspected that what I was going through today was AIWS, and then validated this sensation by reading the Wikipedia entry about AIWS....

...the ground felt too close to me. While walking after having a coffee at the coffee shop about 25 minutes (walk) from my place, I felt 'shorter', or 'dwarfed'. Then I noticed it was that I felt as though I was walking on my knees, not my feet, based on the proximity of the sidewalk to my sight.

VERY strange phenomenon! I've had this happen before, and have had other visuals that are described in AIWS.

The good news is, AIWS, or components of (like the ground too close feeling) are said to be quite commonplace with migraine.

Bingo!

I have my GP appointment on the 7th when I'll bring this up, but in the meantime, I seem to have re-oriented this evening, and the pain's nearly non-existent. Whew.... I felt so freaking discouraged going through this episode.

Thanks again for the kind words and support, this group is great as ever
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Unread 04-30-2012, 12:13 AM   #7
SallyC
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Just super to hear Laura..yeaaaaaa!!!
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~Love, Sally
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"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
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