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"Phantom migraine"/thumping in my head - does anyone get these symptoms?

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Paradox
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Post  jwar Wed Aug 18, 2010 1:18 pm

This is a weird one, but I am in day 2 of an attack of what I call phantom migraine right now and I am wondering if you all experience similar things.

Sometimes I get these neurological attacks that are somewhat bizarre. They are characterized by an intense sort of thumping/fluttering sensation in my head - almost like someone is marching inside my brain. The thumping happens where the migraine pain usually hits (back right side of head) but it doesn't hurt. In fact in a weird way it almost feels good. On top of this my nerves in this area of my head feel like they are tingling or vibrating. Kind of like they are the strings of a guitar that someone has just plucked.

Like I said, there is no pain, but there is a pervasive odd feeling and I find it very unsettling. Like it's very clear to me that my nervous system is freaking out somehow. The feelings cannot by ignored.

During these attacks my motor control is kind of off and moving my arms and hands - and especially holding up my head - is very laborious. They all feel very heavy - like they have cinder blocks attached to them. I also get very clumsy and uncoordinated, and have problems remembering words for things and understanding things around me.

It's really clear when I get these attacks because my eyes become sunken in with large dark circles and I get very, very pale.

Migraine meds do not abort.

I am seeing a new neurologist next Tuesday and will bring it up with him, but I was just wondering if anyone gets anything similar?

Thanks,

Jayme
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Post  CluelessKitty Wed Aug 18, 2010 3:45 pm

Oh gosh it sure sounds weird. No, can't say I had something like that.

I would make sure the neuro orders both MRI and CAT scan. You never know.
I don't think there is a reason to worry, but better safe than sorry, right?

Good luck sweetie. Let us know what the neuro says.

Risa
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Post  jwar Wed Aug 18, 2010 3:54 pm

Thanks for replying. It is very, very weird.

I've had a lot of odd changes in the past couple months with my migraines. I started getting sudden, "migrating" numbness as an aura which I've never had before. I've had visual auras many times, though. Then I got a scintillating scotoma out of my right vision that wouldn't go away for 3 weeks but never culminated in a headache. Extra weird because I have always, 100% of the time gotten the scotomas in my left vision.

Something weird is going on up there. I don't like it. Sad
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Post  CluelessKitty Wed Aug 18, 2010 4:07 pm

Well, I am sorry to hear that.
I believe we have our instinct worth something. We know our bodies best, and we should listen to what they are trying to tell us.

If you sweetie feel something is not right, then INSIST on these two scans. Insist on two, too as both of them are a bit different.
Pay for if you have to.

Don't get too upset, though. I am not downplaying your symptoms by all means, but I am saying M throughout our life never stays exactly the same- it evolves, changes the pattern.

Sometimes slowly, sometimes rapidly. All the changes must be reported to the DR, pronto. So you are doing the right thing. It could be all what's happening to you, that's all.

Nevertheless, I understand how scared and upset you must be right now. I hope the time until the visit and the tests will fly by. The waiting and not knowing is the worst, and I hate that, too.
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Post  jwar Wed Aug 18, 2010 4:20 pm

I'm not super worried about it, more frustrated. I don't think it's anything structural in my brain - I actually had brain surgery last June to remove a large mass that had grown and the symptoms/headaches for that were entirely different than this.

I think it's a manifestation of migraine. I'm just so frustrated because I keep feeling like I reach a point of acceptance, but then the damn disease just won't remain the same. Even if it's predictable pain, I would give anything for some consistency. It's hard to cope with when you have to constantly evolve your emotional reactions.
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Post  CluelessKitty Wed Aug 18, 2010 4:49 pm

I know!!!!!!! I get you!!!

I have different symptoms but similar problem. Every time my M lessens to the point I take less medications
and feel better and I think I finally got the beast under control, it rears its ugly head again!
Usually for at least two weeks.

And I am down all broken and depressed - again. Yes, it IS hard to accept, still even after so many many years.

Risa
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Post  Paradox Wed Aug 18, 2010 5:56 pm

The older I get the more migraine "symptoms" I develop. It's very disconcerting. When I was in my early teens it was pretty straight forward. Severe pain behind right eye, vomiting, photo sensitivity four hours later I would be fine

As I got older I got to throw in olfactory hallucinations, more triggers, and clumsiness to the point I was tested for MS. Now, I have almost constant nausea ( I miss when I would just vomit and be done with it!), m on right and left side.

And I do what I'm supposed to with each new manifestation. I report it to the neuro, he runs more tests and after the MRI, EEG, etc. I get the same feedback. Migraine.

Can't win. I wonder if each migraine is mapping the sensitivity in our brains causing the whole scenario to be ramped up.
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Post  dawn.binks Thu Aug 19, 2010 5:56 am

jwar, have you ever had the painfree migraines before? they are actually common and having had them they are as debilitating as the painful ones as the same things are going on in your brain and you are as unable to do anything as you would if you had got the pain, i have found my imigram injections can halt them but i hope you get some answers from your neuro next week.
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Post  alli Thu Aug 19, 2010 10:18 am

I have episodes like that too. Not much pain but I'm extremely uncoordinated, slur and say the wrong words in conversations, which is really weird. I want to say sandwich and instead I say refridgerator. I notice right away that I said the wrong word, but getting the right one out take a few more seconds. Gets embarrassing but we just laugh it off. The coordination problems kind of sneak up on me. All of a sudden I'm dropping things, I can't open jars and bottles, bang into walls. Sad

I have chalked it up to different version of migraine. They've changed so many times throughout my life so sadly I've become used to my body not doing what I want it to. I always tell my doctor when a new version pops up just in case it is something else.
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Post  Leeann Wed Mar 16, 2011 12:19 am

To Jwar and Alli,

I also have most of the same symptoms both of you spoke of, but it's only been recently that I've realized they were the result of silent migraines. It is very frustrating, especially when you have an episode that requires you to be carried out of a room. People ask what happened, and when you say a migraine, they look at you like, "Oh, is that all?"

Jwar, you did a perfect job describing your symptoms (and mine), both the nerves in your head and the motor control. I've tried before to put in words what it feels like and have never been able to do an accurate description. I hope you don't mind, but I'll probably copy your post so I can show it to my doctor.

Alli, I've also gone through the same periods of clumsiness that you described, but didn't put two and two together to associate them with the onset of the silent migraine. Now, it makes sense.

Thanks to both of you, and good luck!

Leeann

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Post  Mini Wed Mar 16, 2011 1:43 am

Like Dawn said - this is what I also call the painless migraines.
In fact over the years much has changed and I went through different kind of migraine symptoms. This one definitely sound like the painless migraines which nowadas I get more often the the bad ones. I have posted on the subject here few months ago and got a good response at the time so you can look it up in the archives.

I think the pianless migaine might be also caused by hormonal changes as well as better management of this condition: like preventatives and changes in lifestyle - eliminating several triggers which caused many of my bad migraines in the past.
But in the end migraine in all it's form is still a mystery.
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