3 questions (revisited)

Boy, today’s been a weird-feeling day, the last few hours.

I have a follow-up visit with Hain on Monday.

OK, three things I’d like to ask. (I never quit, do I…)

(1-a) For those who used verapamil and it worked, what’s a realistic timeline to expect to begin seeing a change, or at what point did you have your first “better” day? I’ve agreed to give it a full 8 weeks – I think that’s sufficient to gauge whether it’ll work or not. Right now, this is day 31 for me.

(1-b) Have some people found verapamil unsuccessful at first but useful after going to a higher dosage?

(2) My MAV is still hard to explain. “Lightheaded” seems to be the closest standard term for my type, but I need something clearer than that to give the doctor. It is sort of a completely internalized wooziness or unsteadiness, sort of like the inside of the head’s “rocking” on a turbulent boat but the eyes don’t perceive any false motion. As I’ve said many times before it’s very abstract yet extremely perceptible and disturbing. Can anyone help pin down a better description of this “type” of dizziness?

George - lots of luck Monday. let us know how it goes. Unfortunately, Verapamil didn’t work for me so I cannot answer those questions. For me, my worst symptom is the rocking when walking (like I’m on a boat or trampoline). That is disequilibrium.
As far as what you’re describing, I have that as well. Maybe just explain it as brain fog. I understand, though, that it is worst than that. The experience is almost like how you would feel (I imagine) after someone shakes your head a million times. Does that sound right?

For me, my worst symptom is the rocking when walking (like I’m on a boat or trampoline). That is disequilibrium.
This is not exactly the case for me. I’ve never really observed how I walk, but all signs suggest I have totally normal balance. I don’t think I walk unsteadily, though it feels like it.

… Maybe just explain it as brain fog. I understand, though, that it is worst than that. The experience is almost like how you would feel (I imagine) after someone shakes your head a million times. Does that sound right?
Well, the brain-fog part doesn’t really fit me insofar as I don’t have much change in cognitive function, though I do seem to have occasional times when my short-term memory fizzles out a little bit.

Lisa, you know what the sensation of going to a grocery store is like, obviously. We’ve both agreed that it’s totally intolerable for us. For me, it’s a sensation where I feel like I’m rapidly coming under some sort of immense pressure. It’s absolutely bizarre (last night at a store I lasted exactly four minutes and had to leave), and there’s only a sensation of lightheadedness or dizziness – it lacks any visible evidences of such – but it’s extraordinary. In a way you almost WANT the room to start swirling, because the sensation is so overwhelming that you’d think you should see visual “evidence” of your dizziness to substantiate the signals.

Suppose I say this: In the absence of direct visual evidence of dizziness, I might describe it as “peripheral dizziness” – not “peripheral vertigo/dizziness” in the medical-term sense, but rather, as though the dizziness or lightheadedness exists just along and outside the realm of perceptible vision. When I’m in a store, do you know where the dizziness feels strongest, or what part of the visual field feels most disturbed? The peripheral vision. The objects and shelves just at the “edges” of my peripheral field are what seem to trouble me most; it’s almost like the peripheral vision is collapsing in on itself, if that makes any sense (no) – or like an uncontrollable stream of motion and balance signals. Actually, it’s kind of like your eyes trying to focus on every single visual object or stimuli (lights, thousands of things, motion, etc) at once, instead of as a “unified whole.”

Oh, to blazes with my descriptions. By chance, could you describe at all what the sensation feels like to you at the grocery store?

… I don’t know who’s about to run out of patience with my posts/descriptions first – the entire forum, or ME!

I also never lose my balance, but I have the sensation of the floor moving. In a grocery store it is particularly bad. I experience the fall and walls moving, swaying, etc. It is impossible to walk through without a cart. Again, this is my disequilibrium. It sounds like your experiences are a bit different.

Hi George,

I’m glad you don’t quit asking as you stated in your post!!! That is the one thing that I realized during my toughest days…is that some of us have the same symptoms, but we explain it differently and by sharing we can go…“yeah thats it, thats the way I’m feeling too” Anyway, for me, the head thing is definately woozy…like I have had a drink or two (I don’t drink, but its the best way I know how to describe it :mrgreen: I look forward to hearing about your visit with Hain on Monday!!!

Pam

Wow, George! What you described about the peripheral vision sensation is a great description of what I feel, too (though I’d never have thought to describe it that way). Nicely done, quite frankly. I usually describe it as feeling as if I were on a boat, without actually looking like it, but honestly, yours is a much more accurate description. Though I do experience the brain fog thing, especially if I’m trying to work on something particularly complicated or difficult. It’s like my brain just shuts off anymore.

We had to go visit with my mother-in-law in Vegas this weekend, and wow… the combination of noise and lights made me occasionally feel like the whole building was tilting just outside of my line of sight. Any hope I had of my husband allowing me to drive a little on the way home was dashed by the 5th time I grabbed his arm to steady myself.

Hi George,

Verapamil helped a bit with severity of my migraines it took about a month to help,
I didn’t stop my migraines I use verapamil prescribed by my cardiologist for tachycardia, not by my neurologist.

I also have the shopping center “overload of sensory input”.
I know for sure I’m about to have migriane if I don’t leave the store.

Visually everything appears more brightly colored vision becomes very sharp.
During this time everything appears to shift visually slightly.
Then my motion intolerance would kick in, moving my head or body around a corner or too look up at the shelves ect… each head movement seems to trail a while longer after my head has stopped the movement, like my vestibular system trying to catch up to my head turn.

It only took about 10 minutes in a store with fluro lights for this to start happening.
I also feel this during and after a migraine attack.
I often wondered if people with autism felt some of the things us mav’ers do, not the dizziness, but the sensory overload problems
I’ve read it comes hand in hand with most vestibular disorders.

Brian fog:
Patients with dizziness become more visually dependent “ to maintain our balance”
Our brains aren’t use to working so hard on everyday movements, its something that normally happens automatically, without us consciously having to compensate visually
I believe this is why we have chronic brain fog, this fatigues us and our brain, so our brain eventually has to shut down to rest, or is it that our brain is just overloaded by information and starts to freeze up like our computers do sometimes?

When I have a migriane, I have a slightly altered consciousness I don’t lose consciousness “fainting”
it’s more fading out I can hear see and feel everything going on but I can’t respond except to grunt. :shock:
I can’t explain it, but I know it arrives with my aphasia.
the Brain fog will go on for hours after a migriane.
I normally live my life like I’m on a small rocky boat, falling sensations, dipping floors.

Cheers
jen

Wow! More good replies!

Appreciate the input on my description, wobblyjess.

Jennyd: It’s pretty odd, but except for occasional head pressure or headaches, a twitchy-feeling eye, and some occasional short-term-memory “blips,” I have really no disturbances (visual or otherwise) beyond the lightheadedness. I don’t NEED anything more than that, of course … it’s a doozy.

I STILL think I lack a fitting way to describe my lightheadedness experience. It is a near-constant thing, though has some flares in intensity.

I guess I’d say that it’s not the vision itself that’s affected (except in a secondhand sort of way). Oh! I just thought of something. To use the terms loosely, the visual INPUT is affected, but the visual OUTPUT is not. By that I mean: The visual signals – “what I see” – is not altered; the problem lies in the “interpretation” of what I DO see.

Also, I find I lack the lightheadedness (or nearly so) if I close my eyes, and also if I go into a totally dark room for a few minutes, it’ll lessen the severity, including for a while after I leave the darkened room. Contrarily, I tend to do well while riding in a car, but if I close my eyes while riding, I get dizzy. (If I close my eyes while DRIVING, I get KILLED!)

All of this suggests to me that the problem (at least in my case) DOES NOT stem from impaired vestibular function, because if it did, I could be having balance and/or dizziness problems even with a totally blank visual field (e.g., eyes closed). So if lack of visual input equals no lightheadedness, then the presence of visual input causing dizziness is likely attributable to visual hypersensitivity, and the more complex the scenario, the worse it is.

Of course, that’s all speculation, and there are some kinks and question marks in such a theory – for example, why do I not get dizzy when I dream? Or why are certain activities triggers (or not triggers) for worsening dizziness? Etc. (Actually, as to dreaming, this is a fairly unique area, but I suspect the brain can and does differentiate between “actual” vision and “imagined” vision that is simply manufactured and not the product of any actual visual input.)

(If I close my eyes while DRIVING, I get KILLED!)

:lol:

Well, here I am at the waiting-room PC in Hain’s practice right now. I’m just waiting to be called.

Folks drove me into Chicago. Drive was OK. Parked and had to walk 2 blocks, though – bad in busy downtown Chicago! Might as well have been a supermarket.

Here goes nothing … again. And I’m about to ask to stay on verap. (with a bigger dosage) for another ~3.5 weeks. That’s a leap of faith for me. Talk about a tough decision; I’d rather jump on the Effexor bandwagon, esp. since it’s supposed to be good for visual hypersensitivity.

Glad you got there safely!! Keep us posted on his replies.

Pam

I actually saw Dr. Cherchi today. The meeting lasted 50-60 minutes. His initial thought (upon hearing that I felt “no different” from when I began verapamil 32 days ago) was that the medicine should have worked by now and he felt it was probably appropriate to switch over to Effexor, which he favors over Topamax.

I said, however, that I wanted to give verapamil a full 8 weeks, based on: (1) mention from some of this board’s members that verapamil worked for them – but not until about 8 weeks, and (2) prayerful consideration. In defense of using (2), I basically said, ‘I know pure science/medicine isn’t concerned with spiritual or religious matters. I’m not using religion or prayer in place of medical advice; I’m using it in conjunction with it – hence why I also incorporated logic in my thinking.’

Anyway, like Hain, Cherchi definitely listened very carefully (and actually cared about what I was saying) and agreed that he didn’t feel it unreasonable to give verapamil a bit longer. I asked to go to a higher dose, so he agreed to 180. He doesn’t want to go beyond that, though, as even the 120-mg dose has given a noticeable decrease in blood pressure and maybe pulse (pulse was 73 today, used to be closer to 85-88).

Cherchi gave a prescription for Effexor, to begin if verapamil still fails (after 3-4 weeks) or if I get worse on the new dosage. I’ll begin at 12.5 and move up to 37.5.

I inquired about Pristiq, the metabolite of venlafaxine/Effexor. Cherchi says Pristiq begins at a higher dosage than Effexor and added that he hasn’t seen substantial difference in effectiveness between it and Effexor.

We ran out of time, so I didn’t have the chance to ask the 8000 questions I wanted to. Was kind of hoping that maybe Hain or Cherchi and I would get stuck in an elevator for a few hours on the way down to ground floor, but no such luck.

I’ll post a bit more later, in case everyone isn’t bored enough yet.

Hey George,

Thanks for the heads up on your appt. LOL –– man, it would be great to get stuck in an elevator with those two but then the last thing they’d probably want to talk about is MAV. I feel the same way if someone starts quizzing me about the glycemic index – I run in the ooposite direction. :lol:

So it appears that mvertigo has turned into one big giant open-label Effexor experiment. Seems like we’re all either on it or about to go on it.

I am a train wreck at the moment. Pushed the envelope over the weekend and basically did myself in. Went to the Blue Mountains, went for a 4 hour bush walk, ate foods I probably shouldn’t have, drove 250 km, stayed up late etc … you know, life basically, and have been getting thrashed for two days with headache, dizziness and doom. Yeehaaa. I’m going to start thinking about Paxil now … and wondering if I can mix Paxil and Effexor without too much madness occurring. Maybe I should be saying some prayers to the great surveillence camera in the sky although I think he/she/it is likely got a huge backlog already!

Hope things work out with Verap.

Best … Scott 8)

Sorry to hear you feel so lousy. Overdid it, eh? That’s … one thing I’ll never be accused of. For a while, I felt guilty about possibly taking it “too easy.” I’ve since gotten over that guilt, ha. So you “pushed the envelope too far” … in my case, I think I got “returned to sender.”

Paxil and Effexor? An SSRI plus an SNRI? Wow! You’re braver than I am. I’m surprised, too, that you’d give Effexor a second go after it deep-sixed you once. (Not judging your decision; just commenting.)

Maybe I should be saying some prayers to the great surveillence camera in the sky although I think he/she/it is likely got a huge backlog already!

Heh. I’m not sure it works quite like that … but like I said before, there’s nothing to lose for trying. If “he/she/it” is in fact up there … I’m pretty sure They* can, uh … squeeze you in.

  • [Note the indiscriminate use of plural pronoun as poor substitute for gender-neutral singular. And I call myself an editor…!]

George,

I’m still on Effexor – just 15 beads daily or about 5 mg. A homeopathic dose really. I can’t go any higher (and this is just not an efficacious dose) without side effects kicking in so was thinking of introducing Paxil while dropping Effexor. I think it can’t posibly be an issue at 5 mg … but then this is MAV and anything goes doesn’t it? :shock:

Scott

George:

180 mg’s is not to high… I am on 360 (240 am and 120 pm) and I am doing well 95% most days… I am alos on 100 mg’s of Zoloft

I agree 180 isn’t too high. They don’t want to go higher, though. I think they figure that 120 probably should have done it to begin with, but are agreeable to let me “try it my way” for 3-4 weeks. At 120 I already had a bit of a blood-pressure drop (as I mentioned), though, so pushing the med. past 180 would probably risk dropping BP too low.