Trashed in Ohio

Hi guys,

I think I am probably more trashed and dizzy right now than I was last year in Toronto at its worst. It started Sunday and has been escalating. Yesterday an attack of herpes hit and today I was a passenger in a car and just completed driving 700 km south. I’m now in a hotel just north of Dayton Ohio with my father and his wife. I can’t get over how screwed up my head is. It’s like this super high-frequency dizziness if that makes any sense and feeling totally freaked out and disconnected from the world X100. They told me at dinner that my face was white and looked as though I was staring at a ghost. I’m trembling everywhere from the driving all day. Tomorrow I have to do another 700 km to Atlanta and I have no idea how I’ll make it. I think the only way through this is to sit in the back of the car and NOT look at the road at all; just keep my eyes shut or stare at the inside of the car only.

Can any of you relate to this from a car trip? I did a similar road trip last year but had none of this going on.

I’m so pissed off that this is happening. I only have two days with my brother in Atlanta and I don’t want to be flat on my back. He’s in for a shock when he sees his zombie brother. Sorry for the rant … i know some of you are feeling much worse off than this. I guess it’s all relative.

There’s a hot tub in this hotel. I might sit in there for a bit and see if it calms down my nervous system. Failing that, lots of valium.

:frowning:

Scott what nightmare.

I’m normally OK in a car but I have to sit in the front and watch where I’m going, or drive. BUT on a bad day if I do that then stop - then the “fun” begins although it doesn’t sound as bad as your experience - and even if I start driving again I’m B*ggered.

Rant away - it completely sux to have all this stuff happening on holiday (let alone the rest of life!) :evil: . If valium helps then I’d say go for that - the hot tub might make you more lightheaded?

Gabrielle

Hi Scott,
I forgot to say earlier , dont forget the ice pac’s on the head and neck ,
sometimes it can help bring me out of the fog.
This darn illness is shite!!!.

jen

Hi Scott,

So sorry this is happening to you as it did on my holiday. If you remember I posted 3 weeks ago having just come home and half the week was flashing light migraines etc.

Seeing as you are still debating if CFS is part of this, and I have this, then I can say that the biggest help would be as long as you can, away from everyone, on the bed, resting so that you can then do more later on. Eating high protein meals regularly throughout the day (keep the blood sugar up) helps the shakes (shakes usually come from exhaustion, low blood sugar or caffeine). Open the window of the car, fresh air and stop to eat and rest and get away from everyone for a while so you dont have to talk, you can just rest (talking is draining too when you are like this). Small pieces (like a quarter of one tablet) throughout the day help too.

I get the white face when I am bad with the exhaustion etc. very noticeable, I also get dark circles under the eyes and red eyelids.

All of the above, helped me through. Good luck Scott, I know how rotton this can feel when you are away from home.

Christine

Thanks all for the input.

Good tips Christine. I was talking non-stop yesterday in the car. Maybe today I’ll keep quiet and not look out the window and hopefully that will reduce the impact of this. I had another horrible night in this hotel waking every 2 hours heart pounding and all the fun stuff. I still have this vertigo that kind of makes my head feel like it’s being gently jerked back and forth when lying down. The fingers in the electric socket has died down but I’m about to get back into the car and dreading it. I missed your post Christine … looking now.

Jen - I have an ice pack that my mother gave me. I was using it a lot in Toronto in the morning. They feel great. Had never used it before.

Back on the road I go. :shock:

Hi Scott,

I don’t think I could drive around the block as a passenger without getting sick let alone 700 km.

Are you taking anything at all as a preventive for motion sicknesss? I can’t imagine going on long trip without it. Gosh, I truly would need it even for the ride around the block.

What you are feeling seems par for the course with this disease, unfortunately. I do admire that you are not letting it get the better of you and you continue to travel all over.

If you aren’t taking meclizine please consider taking some. If I were going to travel as you are I would probably take 50 mgs to start and then another 25 every 8 hours. Maybe more. After that you can just curl up in the back seat and go to sleep.

I hope you are feeling better and are able to enjoy your time with your brother.

Book

I made it to Atlanta and didn’t stare at the road all day. It’s made a big difference. I still feel whacked but not like last night and I think I will sleep OK tonight. If I can just get one good sleep under my belt I’ll be so much better I think.

Book – thanks for the Meclazine tip. Don’t think I’ve ever taken it but might consider it on the way back. I have to do the 1400 km again on Monday. I want to be able to drive this time as well but that may be wishful thinking.

It’s crazy because in Sydney I drive hundreds of kms every week for work!

Scott

Scott, do you think its entirely down to the flight thats messed you up so bad?

I’m interested in that too - I have the chance to go to the UK for work in September but am v anxious about the impact that 24hrs in a plane might have on my MAV. Oh, and I hate flying. REALLY hate flying…although my GP has given me valium for the trip, which definitely helped on my last trip but that was pre MAV

Gabrielle

Hey Scott - Jeebus what a nightmare! Hope things settle for you. I had the pounding heart thing for a few hours in bed last week - next morning 'flu hit. Anything that upsets the equilibrium seems to taunt this beast. Two words - rest and Valium. And hang in there champ.

Gabrielle - Valium on flights is a life saver.

Vic

Scott,

Sorry you’ve been feeling lousy…especially after the car trip. Generally, the only times a car ride is bothersome is if i’m driving thru narrow, curvey mountains…like driving too Yosemitie. I very…very rarely go there but it i were to drive in mountains…i MUST be the driver. I need to be in control If i am sitting in the back seat…i am most likely will feel nauseated. Unfortantely, i’m one of those poor souls who has never out grown Motion Sickness (curvey roads, boat rides, amusement park rides, etc). Pain in the you know where!

Hope things are better.

Joe

Thanks VIctoria!

Thanks for the replies everyone.

I’m finally back in Toronto after 3500 km of driving of which I could only drive 300 km and I’m paying the price in a big way. I feel like a complete alien today. Tons of head motion going on, light-headedness, emotionally strung out, Sound sensitivity, blah … It’s hard to believe that I can drive without any trouble 95% of the time in Sydney but have gotten this trashed here.

Book – I didn’t take any Dramamine in the end. I haven’t tried it before and would have been a little bit too worried about a negative result from an unknown med. I should give it a go though in Sydney to trial. Maybe it would potentially stop this sort of fallout after a long car journey. Interesting that flying 15,000 km was a cake walk compared to this drive. I was fine after that flight. No doubt because the jet is relatively still without scenery flying by. If I ever go to Atlanat again, I’ll fly.

CJL – I’d say I’m primarily messed up this bad because of the jetlag and then a 10 km walk a few days later. I was already on thin ice and the walk (exercise) was the last straw. I haven’t returned to baseline since – or even close – nor will I for about another 3 weeks I suspect because I have to go through it all over again in Sydney. At least there I don’t have to run around anywhere. By contrast, a trip to Thailand last Christmas with a 4-hour time change had a minimal impact on me compared to this. I only had one nasty day on that trip.

Gabrielle – we’re all different with this of course but if you go to the UK, make sure you allow a good week to recover. In the first week take it VERY easy and keep all other potential triggers out, whatever your triggers may be.

Vic – did you have any bad days on the recent China adventure or are the meds keeping you well and truly sorted?

Joe – strange, but if I am the driver it’s much worse when I’m like this. It’s all visual vertigo garbage. I’m better staring at the back seat of the car.

Scott

Thanks Scott -I’m definitely going to plan a week of recovery time!

Hi Scott,

I did have a few bad days on my recent trip. After about 4 days in China I started to feel like I might have food poisoning - unwell, wobbly, out of it, blasts of vertigo, stomach upsets etc but my friend was fine and we ate exactly the same stuff. So I’m pretty sure it was migraine activity. I was still jet lagged, we drank a fair bit (free happy hour), the weather was hot, humid and Beijing was very polluted with dust storms. I continued to have some badness off and on during the trip. I think days and days of rattle-y train travel on old Russian trains (it’s a long way from Beijing to Helsinki!)contributed as well as not enough sleep (it didn’t get dark until after midnight and the sun was up about 3am!).

BUT, while I was uncomfortable a fair amount of the time it was bearable. I tried to just ignore it and take Valium as needed. I even broke my own rule about not travelling from Europe to Australia without a stop over. Went from Helsinki to London, then to Singapore, arriving in Sydney about 30 hours later at 6am. And they lost my bag. Sigh. Anyway - given what I put my migraine brain through I think I came out the other side pretty well. So yeah, I think my medication is knocking out about 90% of symptoms most of the time. I’m very lucky I know.

When you back?

Vic

Vic out of curiosity what meds are you on?

Hi Gabrielle,

I’m on 150mg of Prothiaden (aka Dothep) every night. Started at 25mg going up to 75mg which worked pretty well for a few months before things started creeping back, so then went up to 150mg where I plan to stay for the forseeable future (that’s maximum dosage). Doc says no dramas being on it long term. Also I take Valium as needed - it is fantastic. A pity it’s so dependance/tolerance forming.

Vic

I got my valium script filled a few days ago (in cause I go to the UK) and after a couple of really crappy weeks I’m tempted to try one (its 2mg) to see what that does for my symptoms. But I’ll probably just look at it for a few more days :lol:

Scott really sorry to hear you’re having all this drama on your holiday. It’s interesting (well, in the same way being hit on the head with a 2x4 might be interesting) that the driving is such a problem there but not here. Sydney traffic is enough to do my head in - after 10 years away not sure how I managed to live there for 30 odd years. I have to say I really admire you for getting on and going on trip etc. I’m really letting the whole MAV thing put me right off the UK trip - even though I would love to see friends I haven’t seen for 5 years…

This condition just keeps on changing. All day yesterday I was dizzy from the car trip and then it just stopped around 4 pm. Went out last night to meet a friend for dinner and wasn’t so bad until the dinner came and I started feeling really tired. Today it feels like I have full blown chronic fatigue now. I’m flat on my back on my mother’s couch. Even lifting my arms feels like an effort.

Is this trip aftermath? I have another family dinner on tonight and I can’t even get off the couch.

Marci – when I feel like this I can’t help wondering if I’m deficient in some crucial mineral in the same way you feel. It’s like all the cells in my body aren’t making any energy at all. No ATP.

So in the last 2 weeks I’ve had symptoms that you could class as fibromylagia, MAV, and now CFS. A trifecta. This whole thing has really put me off coming back here again unless I can seriously get a better management plan.

Scott,

I know how you feel. I probably sound like a hypochondriac: Is this migraine or fibromyalgia; are my symptoms triggered by all, some, or none of the confirmed diagnoses of iron deficiency, low vit. D, TMJ, narcolepsy, neck injury, blah, blah, blah! It drives me crazy! I really don’t care what the label is, I just want to feel like my old self again.

If you can get your hands on some meclizine, or even some OTC dramamine, I think maybe you should give it a try on your flight home. It helps me not feel quite so sick and hungover after I fly. I made it through a 24-hour flight to Europe and back last summer without too much trouble thanks to the meclizine. It makes me tired, so I try to time it right. Earlier this year, I took a business trip to Denver, which is only a few hours by plane, and was pretty ragged out when I got home because I didn’t take the med the way I should have.

I hope you feel better soon and get to enjoy the remainder of your trip.

Marci