Status Migraines, Head Pressure, Vertigo -- Help!

Hello,

My neurologist pointed me to this site in the hopes that someone out there has experienced similar symptoms to mine, and might have found a cause/cure. If any of these symptoms sound familiar, please please respond.

-In 2005 I had vestibular migraines (vertigo for a few weeks first, then a combination of vertigo and status tension-type migraines) for about three months consistently before diagnosis and administration of nortriptyline (25mg) which slowly alleviated the symptoms.
-I weaned off the nortriptyline after 6 months, and have been asymptomatic until this Fall 2009.

-Mid-September 2009 I had a searing headache that would not go away for three days, and was unresponsive to OTC pain medication.
-Misdiagnosed as sinus infection, so took amoxicilin, then methyl-prednisone, then prednisone over a few weeks, all to no effect.
-In the meantime, the pressure headaches were constant, starting at the sinus areas, then drifting to my temples and the rest of my head.
-Got clear CT sinus scan and brain MRI with no contrast.
-Blood tests came back clear.
-Diagnosed with status tension-type migraines and put on nortriptyline (25mg).
-Had chronic daily pressure headache and soreness all over my face and head for 2 months before any relief.
-One doctor administered a “burst” approach using Migranal for 3 days, and one week after this (still on the nortrip 25mg) the pressure started alleviating.
-Full relief in mid-November, with one month of no symptoms.

-Just after Christmas, I experienced a sudden dizzy/vertigo spell when I was walking down the street, where everything was spinning for about 2 minutes.
-For about a week after that had regular bouts of mild to moderate vertigo brought on my walking, with little signs of a headache, accompanied by intense dry mouth.
-I had two to three days of relief, and then the symptoms came back acutely, so that for the last two weeks I can hardly walk more than 2 minutes without intense vertigo (gravitational pulls in all the wrong directions when ambulating) and feeling like I’m not going to make it to where I am heading.
-I have tried clonopin a few times, and have reduced my nortriptyline to 10 mg to rule out that the vertigo is a reaction to the medication.

PLEASE HELP!!!

Maggie

I can’t find the MAV FAQ – can someone explain how I get there on this site?

Hi Maggie,

Welcome to mvertigo. The FAQ on all of this can be found in a “sticky” post above:

http://mvertigo.cloudapp.net/t/faqs-answered-by-neurologists/1223

It sounds quite clear to me that your recent vertigo spells are just migraine-related and not a reaction to nortriptyline. If I were you I’d bump the nori back up to 25 mg or more where you saw complete resolution of the symptoms. It’s great that you have a medication on hand that works for you. Most of the battle with this junk is finding a med that can ve tolerated and is effective. Did Dr Rauch suggest bumping up your med?

Best … Scott

ps. this is the first time I’ve heard the term “tension-type migraine” and I like it because that’s precisely how I get them. Many docs seem to think that TTHs and migraine headaches are mutually exclusive events. Carolyn Bernstein thinks the same but adds that they overlap. I think they’re mostly the same thing, that is, the trigger is the same.

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Thanks so much for your response, Scott. I’m sorry that you experience the pressure type of migraine headache, but I’m glad to hear from someone shares my symptoms. The 25mg of nortriptyline did help the migraine headaches abate after a month or so for this attack and the one in 2005. However, the vertigo started suddenly two months after being on that medicine this time. Is it common to have another attack (this time vertigo instead of tension-type migraine) so soon after, and after having stabilized on the meds? From your knowledge, if that happens is it best to bump up the dosage more to prevent re-occurences? Sorry to barrage with questions, but also is walking-induced severe vertigo/imbalance something that seems “normal” for MAV sufferers as well? And last but not least, I am a real athlete, and llong distance running and yoga are everything to me. Is this something that MAV sufferers have to really curb for the long term, or just for the short term?
Thanks again!
Maggie

P.S. Also, although I spoke to Dr. Rauch on the phone this weekend, I am being treated by Mark Green, the director of Headache Medicine at Mt. Sinai in NYC. Dr. Rauch corroborated Dr. Green’s first effort to eliminate the option of this being a reaction to medicine. I agree with you – I am sure this is MAV, so I guess I will go back to 25 mg tomorrow (that will have been a week of the lower dosage), and then maybe up the dose to 30mg or more if the symptoms don’t subside this time. I also just started the Migraine Diet, and have stopped trying to exercise or move around too much until the severe symptoms go away (fingers crossed).

Hi Maggie,
Welcome to Mvertigo. Sorry you have to be here but are glad you found us. I think Scott’s suggestion of raising the med that helped you is a good idea as well.

I am curious about Dr. Mark Green. Is he a MAV specialist? Does he treat many patients with MAV? How knowledgable is he in this condition? I am wondering why he collaborated with Dr. Rauch?

Thanks,
lisa

Hi Lisa,
Mark Green is neurologist who is more of a migraine and overall headache specialist. I have been working with him on my status tension-type migraines, along with another NYU neurologist (Dr. Mohammed Fouladvand, who I’ve seen for years). Dr. Green has obviously dealt with many patients with MAV, but it is not his specialty, so he wanted me to see an ENT. I actually was put in touch with Dr. Rauch because he is a colleague of my brother, who is a pediatric ENT surgeon in Boston. Dr. Rauch was so helpful, and I’m sorry that he’s not in NY, but I’m seeing someone he recommended tomorrow (Dr. Chris Linstrum). So, I hope Dr. Green and Dr. Linstrum can tag team to try to keep the headaches AND the vertigo under control!

Hi Maggie,
Thanks for clarifying. I was surprised I never heard of Dr. Green as a MAV specialist as I too am in the NYC area and I thought I had researched everyone:-) In addition, before taking my LOA due to MAV I was (am) a physician at Mount Sinai. Where and what type of doc is Dr. Linstrum? Is he a neurologist or an ENT specializing in MAV? Thanks again and please keep us posted!!!

Best,
Lisa

Hi Lisa,
I’m terribly sorry that your MAV has caused you to take a leave of absence. How long has this lasted? Do you also have migraine headaches? Are you experiencing any relief, I hope?
Chris Linstrom is an ENT and neuro-otologist at NYEE-- he was Dr. Rauch’s recommendation of who to see in NYC, so I assume he specializes in MAV and other balance disorders. Mark Green just moved to Mt. Sinai from Columbia to start Mt. Sinai’s headache center (new.mountsinai.org/Find%20A%20Fa … 9616326661). Since I’m unable to walk for more than a few blocks without crippling vertigo, I’m just hoping against hope that he has some answers.
I will of course keep everyone posted!
Maggie

Hi Maggie,
It took me 18 mos. to get a diagnosis and I have been suffering with 24/7 dizziness/rocking/head heaviness/dysequilibrium, etc. for over 2 years now and remain virtually bedridden. I am currently being treated by Larry Newman at Roosevelt Hospital. He sees tons of MAV patients and am trialling meds. Not much progress so far :frowning:

Let us know what Dr. Linstrum has to say for sure and maybe I will check in with him as well if you think he is a good resource. BTW- I too was a long distance runner. I miss that so much!

Warmest,
Lisa

Hi Maggie,

I just wanted to let you know that I saw Dr. Rauch a few months ago, and he really didn’t say much beyond the detailed answer to Scott’s question on this site. He seems to always use Nortriptyline as his first choice. I actually also saw a colleague of his, Dr. Priesol, a few months later, as Dr. Rauch thought it would be a good idea to see a neurologist (Dr. Rauch is an ENT). Dr. Priesol recommended Nort as well, but said that I probably wouldn’t see effects until 50 or 60mg, so you have a way to go and lots of hope. He also thought Topamax and others can be good drugs, but Nort is just what they prescribe most at MEEI. I have had disabling dizziness for 2 1/2 years now. I also have migraine headaches, but it is no where as disabling (although very painful) as the dizziness which has taken my life away for now. Please hang in and I hope you feel better soon. sounds like you are on the right track.

Lisa

Hi Lisa,
I’m so terribly sorry that your dizziness has been so disabling for 2.5 years. I really hope that there is a light at the end of the tunnel very soon for you.
Thank you for your advice. My dizziness is also very crippling, but I will just pray that the gradual increase in nortriptyline and a change in diet will help it abate.
Maggie

Thanks, Maggie. I hope you feel better soon too. keep us posted.

Well, Dr. Linstrom thinks I have vestibular neuronitis (he said the migraines could have caused this damage to the inner ear). He did a series of hearing and balance tests. And I guess from the fact that this all started with spinning and has settled into constant imbalance when walking – he felt this was in keeping with his diagnosis. SO…it’s lots of vestibular exercises and upping my dose of nori back to 25mg to get the migraines back under control.

One of my neurologists is skeptical of this diagnosis as being anything other than part of a migraine attack. Who knows! I guess I’ll just see if the nori increase and exercises work!

Anyone have any opinions, or experience with VN and migraines?!