1st time to airport since MAV hit

Hi there,

I am waiting for a 2 hour flight right now at a very busy airport. I’m still fairly ill, only traveling by air out of absolute necessity at this point. This is not a vacation.

I have to say (as expected) the airport has been pretty difficult. I can walk in line with everyone, but when I have to break away and try to cross pedestrian traffic, etc I’m walking as though I’m 100 years old.

I just confirmed I’m going to hop in a wheelchair just to get out of the terminal at my destination because I don’t think I can manage the long walk right now.

I’m not alone (Thank God) but still scared about this flight and hoping it won’t be too bad on the plane. I’ve read the previous travel posts and tried to prepare myself as best I could.

Please say some prayers for me. :pray:

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Hi Liz,
I hope the airport was the “worst of it” for you and the balance of your travels were better than the first part.

The plane travel itself was not the issue for me, (to my surprise) it was the airports. The lights, reflections, sounds, echoes, wide open spaces, activity, motion, escalators and the list could go on and on!

Once I was on the plane and airborne, I have done fine.

I hope you are doing okay!
Keep us updated!

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Agree with Renee @Naejohn, the plane itself is fine once you get seated and take off. But yeah getting to the terminal, uhg. I remember we were late and thought we would miss the flight so we had to really hurry. Sun glasses, hat, and ear plugs were installed… I thought to myself “oh well, just power through and this will be all done when we make the flight”. Well, we missed the flight and my brain was exhausted with all the lights, beeps, escalators, security, carrying heavy luggage, etc… I almost cried and had a panic attack right there because I knew we’d have to do it all over again to move to the next flight. My wife was fairly understanding, but you almost want them to experience just 10 minutes of what you went through so they could understand better. Was I trip’ing?! Did someone slip some psyllisibum into my decalf?! Nope, just MAV.

Anyways, hope your experience was better than mine, I can relate!

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Hi Renee and Erik,

Thank you for your very kind responses and empathy.

I made it through without passing out but I had to sit in a wheelchair when I reached my destination because terminal just too extensive. I resisted the idea of not walking on my own but soon realized I would have collapsed with the crazy disco lights in one part of the second airport.

Erik - I’m so sorry about that story where you missed your flight. I’m sure at the time you felt terrible and happy that your family was so supportive for it all.

It’s just so amazing to me how I used to whip through a terminal without any trouble and now walk like a little snail (this was around the first airport this morning).

It’s also been very enlightening to take note of how far away railings are when going down ramps, etc. I’m much better on a nice set of steep stairs vs. a big open ramp - felt like asking for a sled!

I never really thought about these things before but earlier today thought what the **** and why is everything so far away?

Also felt like I needed a traffic light :vertical_traffic_light:or crossing guard to go across pedestrian traffic to try to get to the restrooms.

I tried to joke around about some of these things and stay upbeat but honestly i just pray to God I can move like I used to some day.

I feel like this illness has really kicked the independence and spontaneity out of my life to great degree and I’m not at peace with it.

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It’s true what they say. Nobody appreciates what they e got until they lose it. Everybody’s the same. Speed and ease of movement is indicative of balance status. So most on here should be able to relate to your comment. It’s something I think at least once most days even now and that’s without the terminal reference. Just what is euphemistically called ‘Everyday Life’. Thats just all so different once you’ve got a vestibular disorder like VM.

You will. I do. These days I do. On clear head days I am back to moving with my normal pre-VM pace
And agility. By your comments about how far away things appear I suspect that, like me, your VM has affected your spatial awareness/3D vision and until that normalises again your brains having trouble knowing where your body is in space.

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Hi Helen,

Thank you for your response and yes, I’m having a lot of difficulty with the visual vertigo/ spatial awareness aspect of this illness. Just curious did the propranolol knock that out for you eventually?

I’ve been on 240 of verapamil (120 mg extended release twice a day) for about a month now. I realize that isn’t a particularly long time to be on this dose (was taking verapamil at lower dose in April).

Verap knocked out the marshmallow floor feeling and the feeling like I’m going to walk through the ground/ floor.

Verap hasn’t done anything for visual aversion to stores, busy areas (as noted above with airport). I get very shaky, have to walk very slowly, and almost freeze up in these settings.

Doc that I just saw said much better research on beta blockers vs verapamil for all vm issues (if can tolerate s/e of beta blockers). At this point i will try whatever just to get some of my life back.

His thought was try beta blocker, hopefully get some good relief, and if not add in low dose Effexor.

I know this combo has been previously discussed by several others. I was hesitant to lose the progress I’ve made with verapamil. I’m prone to rapid heart rate at times though, and this doc thinks beta blocker will help with that issue and potentially offset Effexor heart rate s/e more effectively than verapamil.

I think that makes sense bc I can still get my heart rate up pretty easily with verapamil without much trouble (minimal to moderate physical exercise).

I think something like propranolol will make that more difficult (which may be a benefit to knock out the vm symptoms but will probably make me feel cruddy). Not a lot of easy solutions but I think this plan makes more sense. Thoughts?

I could see as much by your wording. Reading that I was exactly there with you in spirit. Looking through your eyes as it were. Been there myself though no airports but large hanger like stores, railway stations, shopping malls. It’s all the same thing to the brain.

And yes the Propranolol has knocked out almost all the visual vertigo and is still working on the spatial awareness/3D stuff as we speak. The Propranolol has done a lot for me. It stopped the vestibular attacks completely for over 3 years and since they are much milder. It also cured :crossed_fingers:- hope there’s nobody listening to jinx it - my severe photophobia. It took 8 months to begin to stop the constant 24/7 rotary vertigo but it did it. Reason it’s taken so long I think is because I had no knowledgeable medical support and was subsequently not on a high enough dose for such severe symptoms. My own GP kept telling me to ‘take as little as possible’ rather than building up to sufficient to control symptoms. Another complication might have been I should have been taking a Modified Release version and until 6 weeks ago I wasn’t. Not problems you are likely to experience from all I’ve read on here from the US side. That said if you read Dr Hain he swears by Effexor for visual vertigo but of course that comes with far more side effects and titration difficulties. I found Propranolol so easy. And I’m very med sensitive but Propranolol. I just swallowed it. Virtually no problems.

I agree with your doctor (which is rather arrogant really as I have no medical training whatsoever) however everything I’ve ever read always indicates there’s been far more research done surrounding betablockers and specifically Propranolol Than Verapamil and Calcium Channel Blockers and that results always favour the Propranolol. Propranolol gets glowing reviews all around. As an aside just here in U.K. guidance for VM treatment to general practitioners lists Propranolol, Topiramate and Amitriptyline. Not even a mention of Verapamil. So I’d say he’s spot on there.

I cannot comment on whether it would prove more difficult to get your heart rate up on one over the other. No idea. Sorry.

From all you’ve written I cannot understand why you weren’t started on Propranolol in the first place. Would have seemed a better fit some how but I’d say as you’ve had some success with the Verapamil it’s the ‘Devil you know’ so might just be worth sticking with it a full three months say and reassess. Seems these particular drugs do take much longer to really kick in than some of the others used presumably because they work a different mechanism.

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@ElizabethHope18 , in regards to the flight, have you or anyone else had blocked ears from the pressure, unblock them, followed by severe vertigo? This happens to me every time I fly. I haven’t had an attack as bad as I’m experiencing now in years, so I’m pretty nervous to fly in May. Hopefully it’s better by then, but I’m nervous this could trigger an attack while I’m away.

Any one have any experience with this? Any travel meds that may help without causing rebound?