Silent Migraine...Equivalent

Hi Everyone,

I recently posted my story but appears that many (not all) people who are diagnosed with MAV or Migraine Equivalent appear to have painful migraines. On occasion i have a run of the mill headache but since this condition began back in 1992, i mostly have a Throbbing…with Tension Inside my head around the Temples and more on right side of head which Evolves into Motion that goes every which way. If i do not take Medication(one tab of Xanex per day), i feel like i am afloat on Rough Seas…and much of the motion is felt inside my head. Skipping a meal can result in a headache with some pain but not severe. Tylenol takes care of the pain. Chocolate, Msg, Alcohol, too much Caffeine, too much Stress and lack of sleep makes the dizzy condition worse.

So what i am asking all of you MAV Folks…do any of you mostly have the Silent Migraine…anotherwards you experience lots of Motion and tension inside your head…but no real Pain??

Thanks,

Joe

ps. i am one of the few people who never out grew Motion Sickness…mostly in curvey narrow roads in mountains, on boats, and carnival rides that go in circles. Many people who are diagnosed with MAV appear to have a history of motion sickness.

Hi

I used to have the painful type migriane with aura since I was a teenager. The really bad headache part ceased when the dizzy part kicked in when I was in my late 20’s. I’m now 40 and get the aura and just a slight headahce but feel dizzy 24/7. I’m on Prothiden but haven’t really noticed a difference yet.

I don’t remember even being motion intolerant as a child but I never liked carnival rides that spun round so maybe?

I also take Xanax 2mg a day to stay sane and it helps but I still feel queer in the way I look at the world and light is a real problem for me.

Cheers

Dizzyloopy

Hi Joe,

I’m a silent migraneur–I’ve also had some trouble finding people who have rarely, if ever, had a migraine headache and whose major complaint is motion-related. I tend, as you said, to experience head tension and minor headaches, but nothing pain-wise that fits the description of a “migraine headache.” Internal sense of motion is generally accompanied by nausea and fatigue, but without any sure fire way of predicting these periods, Imitrex and other abortives are useless. I also, when looking back, have a history of motion intolerance, which I believed I had overcome until this came on.

I’m currently on 75mgs of Pamelor daily. It’s allowed me to be a bit more active, but I’m still a bit skeptical of the long-term benefits. Still experiencing acute motion sensations about 3 to 5 times a week, with constant mild imbalance. Let me know if you’ve had any luck with other strategies.

Hi Frances,

Could you describe a bit more about the Motion you feel? Where is the Motion mostly felt for you? My condition started with vertigo and then the rocking motion set in. The Motion is felt mostly inside my head and along with that is tension…like my Mind is not at ease. The best way to describe it is like when you walk into the ocean with water about mid-chest deep and the little waves that knock into you from all directions…that is the way it feels if i do not take medication. It’s like a ping pong ball or pendulum going every which way. When i take medication it helps to keep me more stationary but still not 100%. I have to watch my diet…like caffeine, msg, alcohol, chocolate plus i also have to watch my stress and get 8 hours or more sleep every night. If i don’t i will not feel as good. Some of my worst days felt like i was deep sea fishing.

what kind of medication is pamelor? I am taking Elavil…got as high as 100mg but began to have some side affects so i am on the way to reducing it back to 50mg. Not sure what medication i will try next.

Joe

My experience of motion is much like you described-- It feels as though someone is gripping the back of my head and moving it around. This, as you said, results in a general feeling of tension in the back/left side of my head and neck. I’ve been seeing a chiropractor regularly since this started, and that has a helped a bit with the accompanying neck stiffness. One of the hardest things I’ve experienced with this is that I am not very VISIBLY affected by this sense of motion. Every now and then I may stumble a bit, or misjudge a step…but generally I look and act quite normal. But it takes a ridiculous amount of energy to keep this up…

I’m also trying to evaluate whether the meds are still working for me. Pamelor is, like Elavil, a tricyclic antidepressant. I’ve been on it since September and it has made coping a bit easier…but recently it seems to have lost a bit of its positive effects. Nausea has always been a big problem for me with the imbalance and it has recently gotten worse instead of better. I took Topamax, an antiseizure med, for about 6 weeks before going off it in favor of Pamelor-- Topamax seemed to make everything worse instead of better. I may try Verapamil, a blood pressure med, in combination with Pamelor and see if that makes a difference.

Hi Francis,

Yes…i can relate to your symptoms regarding someone pulling the back of your head and moving it around. Another way i have described it is when you walk into the ocean…water is chest deep and you know how the little waves bop into you from every which way…well that is how it feels inside my head…if i don’t take medication. Now if i do take my medication…i feel less throbbing, pultizing with motion but generally can atleast work my part-time job and go to movies, etc. An over abundance of stress can makes symptoms work and ususally have to take a bit more medication. Remember…i have throbbing and motion inside my head but no pain except Tension. I know one person saying that Topomax has really helped her. I guess our bodies are all a little different. My neck hurts a little too but not severe. I very rarely get intense vertigo spins anymore, but the other day i had a small mini-spin getting out of bed. It kind of went 1/4 of the way and stopped. A number of years back i would have violent spins and always have to vomit. By the way frances…have you had difficulty with motion sickness in your life? They say many people with Migraine tend to be Motion Intolerance. I have had this all my life…particularly in curvey roads in the mountians or on a boat or carnival ride that goes in circle. I never out grew that stuff.

Joe

Hi Joe it’s jenny
I thought you might find this interesting.
Jenny [subject #482], Email to Klaus Podoll, December 4, 2007)

In fact, such migraine auras with hallucinations of time have been described as “the rushes” in the literature (Dooley et al., 1990). Following Todd (1955), such disorders of time perception represent a facultative symptom of the Alice in Wonderland syndrome (AIWS), a symptom complex characterised by a variety of self-experienced paroxysmal body image disturbances affecting the experience of the size, mass, shape of the body or its position in space (obligatory core symptoms of the AIWS, e.g. macro- and microsomatognosia, out-of-body experiences) which may co-occur with depersonalization, derealization, visual illusions and disorders of the time perception (facultative symptoms of the AIWS). The name comes, of course, from Lewis Carroll’s 1865 novel “Alice’s Adventures in Wonderland”, which is believed to have been inspired by Carroll’s own migraine experiences documented as early as 1856.

Jenny,

That is interesting. Thanks for sharing.

Do you have situations where the motion gets so intense that it brings on Panic? That is what sometimes happens if too much stimulation…like if i’m in a room with an a numerous amount of people and it is real busy with lots and lots of people…i begin to feel overwhelmed…rocking increases and can turn into panic.

Joe

Hi Joe most definatly, I think this is comen with al people who have dizziness for what ever reason, vestibular prob, ect.
but one of my aura’s is very similar to pannic, It’s called phonophobia, it makes me pannic even in my own lounge room. when it happens out and about, I just end to with draw or have a pannic attack.
I’m so over this dumb illness I just want to be normal again like other people.
I think this elavil is having a negative effect on me, I’m starting to feel depressed and I havent felt that for a long time, the wired thing is it’s suposed to be an anti depressant, and it’s making me very sad.
take care Joe.

Jen - thanks for the AIWS quote - when I was at my worst I had all of those distortions - I thought I had actually lost my mind.

Good luck with the Elavil - i’ve read that some people can get very depressed on Elavil and end up needing to stop it.

Julie

Hi Julie I had aiwas mostly as a little girl and during teenage years, horrible thing, I didnt ralise it was part of my aura as ive never had head pain with it, I have silent migraine with vertigo.
I also thought I was nuts lol
oh well you live and learn.
cheers jen