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Weird Migraine?? or something else?

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Post  JGal Fri Jun 24, 2011 8:29 pm

Hi everyone,

I'm new, so this is going to long Wink I've been having migraines my whole life starting around puberty - my mom has also suffered with migraines for decades, though now she seems to be doing much better, with a better understanding of the disease, her triggers and which meds work for her.

I usually just get a common migraine with pain about one week before my period and I take Zomig for relief - works amazing. And beyond that, my migraines have been completely manageable.

Until about four weeks ago...

I went to the ER with Stroke-like symptoms - waves of vertigo, inability to speak, inability to move my arms and legs without looking like a robot and then after about 30 seconds it would be gone and I was back to normal. Had a CT Scan and bloodword - both came out normal.

A week later I went to see a neurologist and had a carotid doppler and another CT scan - again everything was all good.

Neuro said it's an atypical migraine.

Here's what's so weird to me though, having never experienced aura until now...

- I have NO pain at all (thank God) except random tension pain if I've been crying etc...
- Stroke-like episodes have continued non-stop, everday for the past 4 weeks, 2 days
- Episodes come 10-12 an hour or every few minutes and last for about 30 seconds

Nothing is working and I'm getting REALLY depressed that this won't go away... maybe it's not a migraine at all???

He's given me Nortiptyline 10mg 1 week; 20mg 2nd week; 30mg 3rd week and I'm now up to 40mg a night - I'm soooo tired all day long but hoping it will pass as I've read some of the past posts on this.

I've also been given low dose of Ativan to cope with the anxiety I'm experiencing through the day as I can't go to work safely and even a trip to the grocery store is freaking me out now that people will think I'm having a stroke - people get really scared when I have an episode in front of them. I only take this when I'm going to go out and I feel anxious.

I've been taking .25 mg clonazepam (an anti-seizure drug) at night to see if helps reduce the number of episodes or frequency of episodes - at this point I'm still not too sure if it's helping, but I'm taking it anyway.

I've started taking the following vitamins - B2 (riboflavin), CoQ10, Magnesium - as I've read that these can all be deficient in the migraine brain.

I've been going twice weekly to massage therapy, chiropractic and accupuncturist - have seen no improvement

My questions that are unanswered so far:

1. Has anyone else experience an atypical migraine like this? Without the pain too?
2. How long can these symptoms possibly go on for? I've been off work for a month and I think they're going to push me into Short Term Disability next week because it's just not safe for me to get to work on the subway (the flashing lights don't help much either).
3. What treatments have worked for anyone trying to rid of the acute phase of aura? Triptans etc. don't work because I'm not experiencing pain.

Sorry this is so long, but I feel very alone right now and I'm not seeing the neurologist again until August - I'm starting to get freaked out, but reading some of this forum's past posts, I was starting to feel comforted, so please anyone who has experienced anything like this, please reach out to me!

Jenn
JGal
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Age : 42
Location : Toronto, ON Canada

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Post  Jewishmother Sat Jun 25, 2011 9:01 am

Jenn - I have basilar-type migraines and have lots of stroke-like symptoms: numbness, inability to speak, confusion, lowered level of consciousness, unconsciousness etc... Sometimes I have pain before, after or during but not very often. I have found no meds that impact the aura symptoms. The best that I can do is to try and identify my triggers and avoid them as best I can. Also it helps to recognize them for what they are - not stoke the fire with added anxiety - that I know is hard to do but it does help me when the symptoms start to take a deep breath and find a safe space to let them do what they have to do. Do you know if you have any prodrome symptoms? Those are symptoms that are very subtle that sometimes occur before the aura........for me it is yawning and I know when the yawning starts that the aura symptoms will soon follow and I can be better prepared.

You say that the episodes come 10-12 an hour....................does that mean that you have different aura symptoms that each last about 30 seconds? Sounds like your migraine lasts an hour and consists of several aura symptoms which is not unusual for me also. How do you feel when it is over? How many times during a day do you go thru this cycle? Do you know what may be triggering the migraines? I know how frustrated and anxious you must be feeling but please now you are not alone in this journey. Leslie
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Post  jwar Sun Jun 26, 2011 7:20 am

I have similar auras in certain ways. I can definitely identify with the stroke-like symptoms of inability to speak/difficulty moving correctly/etc. I also often have a visual component to the auras, but it's not necessary. Often I have these episodes with no resultant pain (if you search on this forum for my past post entitled "phantom migraine" you can read about my experience).

The only thing that has ever helped the auras go away is Lamictal XR 100mg. It took me maybe 6 weeks to titrate up to the dose. During the time I was on the medication I had absolutely zero aura symptoms for close to a year. I stopped taking the medicine for some personal reasons (no bad side effects or anything like that - no worries).

It might be worth discussing with your doc. A quick pubmed search will show that Lamictal (or lamotrigine) has been proven clinically effective in the treatment of aura.

I'm sorry you are going through this. It must be truly horrible, and my thoughts are with you.
jwar
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Post  jwar Sun Jun 26, 2011 7:25 am

Here are some links to articles that you might want to try discussing with your doctor, if you are interested in trying Lamictal:

http://www.ncbi.nlm.nih.gov/pubmed/17508181 - discusses lamotrigine use in basilar type migraine

http://www.ncbi.nlm.nih.gov/pubmed/16291905 - study of lamotrigine use in classical migraine

http://www.ncbi.nlm.nih.gov/pubmed/11576209 - lamotrigine use in persistant refractory visual aura

http://www.ncbi.nlm.nih.gov/pubmed/10099862 - migraine with aura

http://www.ncbi.nlm.nih.gov/pubmed/9137848 - migraine with aura

Good luck to you!
jwar
jwar

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