Thailand

[scott]

Hi All,

I thought I’d sum up how things have been going in Thailand. This country is just beautiful and the people are fantastic. They are so incredibly hospitable and warm I can hardly believe it sometimes. They truly want you to enjoy yourself and have a great time. The island I’m on is magic – Ko Lanta. It’s definitely the major destination for a ton of Swedes. Everyone on the beach has blonde hair! :lol:

Now the bad news: MAV, the illness from hell. I have been doing pretty darn well considering how dizzy I was for 3 straight weeks before leaving. I have even been riding around on a scooter which, at first, knocked me around but I soon got used to it and it was ok. The problems began a few days ago with a dramatic increase in my fruit consumption as you do over here (a lot of bananas). I was waking with heavy head fog and feeling really flat as well. So as of today I dropped the fruit, but then I woke with what felt like a viral infection. Sinuses were jammed this morning and I was sneezing and now it seems to have gone. It was one of those feelings you get when a fan has been blowing on you all night (which it has been in this heat). So all day today I’ve felt like someone was standing on my chest and had that “wounded animal” feeling as I was trying to do stuff today, dragging my carcass around as this thing beat me up.

About 3 hours ago I went for a full body Thai massage here at the beach. The only cost 6 bucks and are amazing. Today’s was the 5th one I’ve had on this trip. The previous 4 left me feeling great and have really picked me up when I was feeling less than average, but not today. I’m now sitting here typing this feeling very ill indeed. I’ve got very heavy vertigo and lying down flat is impossible without feeling like I’m going to have a panic attack. Why did THIS massage push the buttons dammit? It’s like my nervous system was suddenly sensitised today and this was like a rocket up my back side. I’ve shovelled down 7.5 mg of valium to try and kill it but it’s done nothing at all! Worse, I feel embarrassed because I’m here with friends and I don’t want to freak them out. They just went out and I’m in lock down. It’s a killer because we were going to book a snorkelling trip tomorrow but I can barely walk to the front door of this bungalow right now. I also have the chance to go scuba diving but am too freaked out about that right now. I haven’t dived since MAV arrived.

Have any of you guys been trashed by a massage before? I have once before and it did come good but right now this feels like it doesn’t want to budge. I’m looking forward to sleeping tonight like a hole in the head. It feels like I’m heavily drugged and will likely be in for a night of my heart pounding in my throat.

The last thing that has been difficult on this trip is the food. Thai food is amazing but they use sauces in most dishes that are migraine triggers – especially for me. It kills me watching my friends eat Panang fish curries etc. I just can’t go there. I guess this is what a diabetic feels like weighing up the amount of carbs in a portion etc. Really boring but I’m not whinging, I’ve found other things that are tasty that I can eat. Really sucks having to end the fruit drinks though.

So there you have it: it requires constant planning and not going overboard which I’ve clearly done on the massage and fruit front. Very hard not to overdo things when the good moments arrive, and you’re having fun and there have been lots of fun moments.

No idea what the next few days will bring but I think the toughest right now is feeling like some “sick” person around my friends who enjoy a normal life without this garbage interfering with their lives (I am so envious when they drink beer whenever they like and then top it off with a Pad Thai).

I hope you all had a great Christmas. It was great here with people setting off all of these lanterns from the beach. They’re like little mini hot air balloons and drift about 200 feet into the night sky and float off out to sea.

Best … Scott :shock: ← feeling really spooked

[Joanmac]

Scott: sorry to hear your MAV took a turn on vacations. But I also have problems with massage and vertigo. Way back when I as going through Vestibluar Rehab, at then of every session my physical therapist would give me a shoulder and neck massage. Whenever she pressed too hard on my right side of my neck by my shoulders I would get an immediate feeling of tipping over. It just hit some type of nerve and would go straight up my neck and into my brain. Sometimes putting ice on my neck makes me feel better. Try it it can’t hurt. Hopefully things will get better soon. Just do what you can and enjoy.

Joan

[scott]

Thanks Joan. What I find totally bizarre is that I could have a bunch of massages a few times earlier with no adverse effect but today – BAM. This illness makes no sense sometimes. Maybe she just hit a spot today that was missed before and it went straight into my brain/ vestibular system and set me off. Or maybe because there’s a bit of virus hanging around (though it feels clear now). I’m hoping a night’s sleep will calm this all down again. The vertigo is still in full swing 8 hours later and the IBS is back which is not a good sign either.

Thanks again … no more massages for me that’s for sure.

Scott

[cmoc]

Hi Scott,

My first and last full body massage was truly awful. I was laid flat on front with face through a hole with a strong smell of orange oil. When I got up I nearly fell over with dizziness and the next day I had a bad virus, it seemed to bring it out somehow.

On the other hand, I went to a neck, head and back massage regularly a few years back and I had it done, sitting up, much better, but once she bought on vertigo by stretching my neck and turning it to the side. Once we worked out what suited, it helped, I remember having a full week without a headache after one session. I went back to her at a later date and it didnt work anymore and I couldnt afford to go anyway.

I find fruit detoxifies and therefore I always feel rougher when I indulge too much, especially grapes.

I think you have done really well to just get there. I know its annoying not being able to do the things you want to do, when I went to Corfu in September, I wanted to go on a boat trip to another island but I had a good idea it would set things off so I didnt go, but you are having a different adventure and experience whatever you are doing. Every holiday is a mixture of good and bad with this illness but its when you look back at what you achieved you feel good.

Well done for getting there. Hope tomorrow is a better day.

Christine

[Joanmac]

I actually asked Dr. Priesol about this once. I told him it feels to me like the nerves in my neck, head become over heated or over stimulated and using ice actually calms everthing done. I know being in menopausal transition I frequently have hot flashes that go right up my neck and into my head. I put ice or cold compresses on my neck and head. Actually when I read Dr. Bernstein’s book, The Migraine Brain, she says that when ever any comes into her office complaining of a headache they can’t control, the first thing the nurses do is give them an ice pack to put on the area of pain and it seems to help. That is where I got the idea to use ice/cold. It works for me, hopefully it will help someone else out there.

[MikaelHS]

It’s great that you got to thailand, one just cannot let this bs take everything. I really hope you’re feeling better soon and can enjoy your holiday like you deserve. I would write a longer message but my heads damn foggy

Pop em pills and go to bed I say =)

[emmasaga]

Hey Scott,

I’m happy you made it to Thailand after all, and I’m sorry to hear you are not doing that well. I had my first huge vertigo attack after a massage, but I’ve had massages after that and I felt fine so I’m not sure what it can be. Maybe it is because you a relaxing and your body is catching up from all the stress in your life… When are you coming back to Australia by the way? do you get some time of before you have to back to work?

I’m about to start taking Neurontin today and I’m so scared of the side effects…but I know I have to give it a shot…

Call me on Skype sometime soon!

Emma

[scott]

Hey All,

Thanks for the replies re the massages. Emma, that’s crazy that a massage can trigger a big vertigo attack like that but then do nothing other times. Can a massage be a trigger? It must be depending on how everything else is going at that time. Christine –- she also stretched my neck as well in this really weird way … but had done the same thing on the 24th with no bad effect so I have no idea.

It’s been interesting to compare this holiday in Thailand virtually unmedicated (small amount of Paxil to keep my mood solid) versus my holiday here in 2006 when I was on 15 mg Cipramil. Back then I was eating just about anything (and gaining weight like a Christmas turkey) without really suffering too badly or at least not realising it (hard to recall now if I was getting head fog etc from the fruit drinks and food). We rode motorcycles everywhere and ran all over and I only recall a few small blips – one in particular after I had run about 2 km in a down pour. That sudden burst of exercise messed my head up for a week but only lightly. Compare that to now and I am dizzy pretty much every day and have become less functional as this holiday has progressed. I’ve had to call off a snorkelling trip today and make it tomorrow because I just can’t push myself any more. Yesterday, riding the motorcycle made me feel really ill (super dizzy, spooked and anxious) for the first time on this trip. I came back to the bungalow and couldn’t move or talk to anyone for about 2 hours. Up until now riding was ok. Another option I have is to go scuba diving but I think I’ll have to scrap that altogether. I’m gutted because this is one of the most outstanding places on the planet to do scuba but I just know that if I do a whole day out there at 15 m with all the gear and flying around on a boat etc, it’ll do me in – or could be too dangerous.

If anything this trip has made me realise how a medication is essential to lift the level of all that I can do. In Sydney I have my routine and can get around most things but a trip like this sure does throw a massive reality check in your face. It’s very difficult to not be enviuos of people sitting around enjoying beers and cocktails into the late hours at some funky little beach bar without a care in the world while I nurse glasses of soda water, or think nothing of getting up early after a big night out and jump on a boat snorkelling all day. While I don’t ever expect to be able to that (drink all night), it would be nice to cycle around for the day or go out on the water with scuba gear and not get trashed by MAV for a week or two afterwards.

Anyhow, I’m just really grateful that I can be here at all despite the hassles and down time. There’s so much to appreciate and I know it could be a whole lot worse if migraine decided to go totally nuclear on me.

Mikael, Emma and Tran – there must be some mass migration here to Ko Lanta and Phuket from Sweden! The whole beach is blonde. Restaurants are packed with Swedish families. I read too that the tsunami 5 years ago caused the greatest number of deaths in one hit for Sweden since some war that took place back in 1709!

Scott

ps. Em, I’m back on the 1st. May try to extend my stay but nor sure given the current state of this dizziness. Will ring soon.

[joseph0952]

H Scott,

I admire you …taking off and visiting Thailand. How long was the Plane Trip? Seems like you did not have any problem with that? I didnot aggravate the MAV symptoms? I want to visit a friend in Germany (from California)…but something tells me not to go for fear of a setback because of the long trip…and god only know what else could make it worse.

I was in Thailand many years ago when i was in the military…so you are right…they are very nice people.

You mentioned that you are virtually unmedicated with the exception of a small amount of Paxil…that is amazing! If i don’t take a small amount of Benzo once a day i have lots of difficulty functioning outside the house. So i just don’t know how you made the trip??

Sorry that things sort of back-fired on you. You wanted to snorkel but then you changed your mind. I really can’t blame you for that. Plus…riding the mortocycle kind of set you back.

Yes scott…medication is most defintely needed. If i don’t take the small amount of medication daily…i live in a very uncomfortable dizzy-motion world but as you know it’s mostly inside of my body ( feel motion in me)…vs the outer world making motion.

I fly from California to kansas City without too muc problems… and i soppose i could make it a little further like Florida or New York… but haven’t tried it yet. Airports, lack of good sleep when flying and stress can set me back for a couple of days.

So how are you doing currently? How was the flight back home from Thailand?

Joe

[Victoria]

Hi Joe,

I’ve flown in the throes of MAV - 15 hours to and from NYC and 24+ hours to and from Cyprus. What has got me through is lots of Valium (taken as scared of flying but also good for the MAV). I think the worst part is not so much the flying itself but the jet lag - lack of sleep and huge changes in time zones. This really makes all things MAV worse.

Even with MAV under control too much flying is not great. A few months ago I flew from Sydney to Helsinki (30+ hours non stop) and I did have some MAV flare ups over the next few weeks, including a massive, blinding aura migraine.

In future I plan to try and break up any long flights with a stop over - so no more than around 10-12 hours each leg, and, where possible, no overnight flights. Still have to fly though - can’t let the MAV beast take over!

Vic

[joseph0952]

Hi Vic,

Thanks for sharing your story about long flights. I also have to increase the Xanax a bit when flying. You are right…it’s not flying on the plane that is so much stressful it’s dealing with airports, jet lag, lack of sleep and many hours difference in time zones. This is all so true!

Vic…i don’t know about you but I feel more comfortable flying with my partner or friend. Since having MAV… it’s a good feeling knowing someone is there just in case the MAV flares up. Prior to MAV i used to fly all over the place by myself and loved it!

Joe

[Dizzyrascal]

There is always a lot of worry about flying. So on a positive note for once I can say I haven’t had any problems with flying in the 5 years I’ve had this. Obviously feeling jet lagged is a by product which makes anyone feel shit, but thats all.

Also no problem with massages.

Just thought its important to remember everyone is different, so dont be scared to try things.

Scott hope things are better with you!

[scott]

Hey All,

I’m just killing 30 minutes before boarding the plane home. All up the holiday was a great success even though I did get absolutely slammed by MAV on two occaisons. The first was after the full body Thai massage after I had really pushed the envelope two days before and the second was last night. We decided after a day of travel, 6 hours sleep and three mojitos the night before that we’d go for massage again. My friends did the full body but I opted for just a “safe” foot massage. I thought this would have to be safe as there would be no prodding around my upper back, head and neck. Not so. Can you believe that a lower leg and foot massage for one hour sent me into orbit again? I could hardly believe it. I was really annoyed at myself for risking it but then thought c’mon it was a foot massage. I’ve only ever been set off by neck and upper back stuff and thought this would be really relaxing (which it was until I stood up). The result was full on vertigo for most of the evening which was really hugely annoying considering it was New Year’s Eve here in Phuket. Even 5 mg of valium barely made a dent. But I soldiered on despite feeling like I had been shot and even had a few drinks. I’m just determined to not let this thing screw up my fun any more. It stopped after the third drink and I was in bed at 3 am. I thought today might be a disaster and one I would just deal with on the plane home loaded up with valium but guess what? I feel really OK – about 85%. Go figure.

If there’s one thing I’ve learned is that this thing can swing so wildly from one moment to the next. It’s astonishing and seemingly unpredictable. I do wonder if the amount of time I spend on the computer at home (work) has some sort of way of keeping me messed up on a continual basis whereas here I’ve hardly been on it at all and seem to tolerate more things that would kill me in Sydney. Computer use (as in eye tracking) does turn the screws for me.

Another weird thing: in Sydney I can’t eat fruit without getting mouth ulcers and headaches. Here in Thailand it appears that fruit has not caused symptoms even though I thought it might be at first. And not one mouth ulcer. Not one. I’ve been eating chilli too here in some dishes and still no mouth ulcers which is guaranteed in Sydney. I cannot make any logical sense from that.

I’m gutted to be leaving Thailand. This country is just unreal. The people are magic. Sydney will feel so clinical after being here. They definitely let it all hang out here. The fireworks last night on the beach were insane. The Thai people fire them off all over the place – the big suckers that they shoot over the Sydney Harbour Bridge, but off the street right in front of you! They must import them all in from China. There were guys selling them in the street by the truck load.

Luckily it’s only a 4-h time change to Sydney and a 9-h flight so should be cool although it’s an over-nighter.

Hope everyone had a great New Year’s Eve and may you all find new and better ways to put this MAV junk behind you once and for all in 2010.

Scott

ps. this was taken a few days ago at this great lookout on Ko Lanta. The guy cut the papaya off the tree for that drink!
http://www.glycemicindex.com/sd/scott1.jpg

[Victoria]

Hey Scott,

Your holiday sounds fabtastic and that photo speaks volumes.

I’m going to wax philosophical for a moment here and state the bleeding obvious - holidays rock. And it’s not so much that they rock that is good about them it’s that life sucks so badly in comparison. I really need to start gambling so I can win enough money to throw in this whole “career” debacle.

My second comment is about your massage(s). I was hanging out tonight with a bunch of people and all of us have been to Thailand and all have had Thai massages. It wasn’t until I said “Yeah, but they’re not like real massages they’re like assisted yoga” that the penny dropped. They are soooo intense. No woosy oil, soft music and clinking wind chimes - it’s some wiry old crone with the grip of a viper bending you all out of shape and she’s not happy till she hears you beg for mercy. If anything I’m surprised you managed to live through four before the MAV hit!

Anyways, hope the flight goes well and you’ll find Sydney completely unchanged .

Vic

[MAVLisa]

Scott,

I am glad to hear that overall you had a terrific time. I hope you have a safe flight home.

I have to say that I am a bit confused by your symptoms. For me and what I thought were many others, MAV seems to be a chronic illness. It does not come and then disappear based on what foods are consumed, a tiny amount of benzo in a person’s system, or what type of day a person has. That being said, I do very well know that there are triggers (food, etc.) that can make some days a bit worse than others. However, it seems like until a proper treatment (which usually consists of medication) is devised, a person’s symptoms do not change dramatically day to day, moment to moment. Perhaps, I am just feeling bitter, as I have not been well for one second in 2 years and 1/2; hence, I have never been on the correct treatment for me. I look forward to starting a proper drug trial next month, as I have stopped a few meds prematurely, which is not the way to treat MAV.

I also never realized that a subtherapeutic dose of a benzo can just rid a person of MAV sxs. Is that really possible or is MAV more anxiety based for some?

Mostly rhetorical questions here, and I hope that I am not offending anyone by these questions. I am just trying to get to the bottom of this devastating illness, as after 2 years 1/2 it is time to get my life back.

Thanks,
Lisa

[Joanmac]

Scott: I am so glad you enjoyed your trip. I agree with you about sitting in front of a computer all day. That usually puts me right over the edge. I do see a difference when I am away from the computer (on vacation or whatever) but I do pay the price when I return to 8 hours in front of the computer. Good luck in the next week returning to your work and computer.
Lisa, I have days or parts of days that I feel almost 80% ok. Hormones at menopause being a huge trigger as they fluctuate during the day my symptoms change. Also the computer, flourescent lights all contribute so if I remove myself from that environment my symptoms lessen or go away, that doesn’t mean my MAV has gone away. My symptoms change hour to hour and day to day. That is one reason I am not interested in trialing medications. If I were to try meds I may get my symptoms under control only to have my hormones fluctuate and throw things off again. I know I have to be physically active on a daily basis, eat regular meals, etc. to keep symptoms at bay, but they do flare up and everything is always just under the surface.

Scott: let us know how things go as you re-introduce your self to your work environment. Maybe you can walk away from your computer at a regular basis as you get re-acquainted with your work set up.

Joan

[scott]

Hi Joan,

That about describes MAV for me too –– changing from day to day. Some days 85-90% and others well below 50% depending on the trigger load. I can’t say I’ve really ever been the same since this hit, maybe close on Cipramil which came with a price to pay however that was too high for me. Thanks for your input on computer screens. I have to wonder how that’s affecting me and maybe I should do just that: have a forced break from it every 30 or 60 min for 10 min every day.

Lisa – my symptoms are chronic but wax and wane. They never disappear completely but may drop to a level where I don’t think about it, sort of like the noise of traffic in the background that you would get used to. I haven’t felt “normal” since this hit me 6 years ago. For the most part I do not experience chronic dizziness at a level that is debilitating. If I look for it though, visual vertigo is there even on a good day. I can never hold distant small objects still in my visual field. Over the last 3-4 weeks, however, dizziness and vertigo have been in the picture daily at a level that IS significant and has knocked me out for two days here and there and required stopping everything (post massage for example) or after riding a motorcycle all day. As I write you now, I’ve got a lot of dysequilibrium going on from the lack of sleep and travel and so I’ll take valium tonight to make lying flat easier. When I walk, it’s like I’m drunk. This will (should) clear up once the routine sets in again and sleep is back on track. Lisa, I’m so hoping you’ll soon have days where this drops off for you to the point of it no longer being so unbelievably nasty. You must be very close to having the baby now. It has to change after that and with nori.

Luke, I think I have a good idea of what travel was like for you now, the good and the bad days you had. You just have to stop everything for a day or two and you can get a grip again if things get too nasty. Any update on the Piz trial? Maybe you’ll need to add in that Cipramil again if it was not a problem previously.

Scott

[scott]

Hi Joe,

How long was the Plane Trip? Seems like you did not have any problem with that? I did not aggravate the MAV symptoms?

Yup, it does but as long as there isn’t any huge time change it usually has no effect after a day or so of sleep etc. The trip was 9 hours all up. Going to Toronto was much harder though because of the much bigger time change compared with Thailand.

I want to visit a friend in Germany (from California)…but something tells me not to go for fear of a setback because of the long trip…and god only know what else could make it worse.

It probably will for a day or two and the jet lag may give you some grief but I’d just go anyway. I’ve just come to a point where I’ll just do things as long as I’m physically able. If the s**t hits the fan then I have a day off to do nothing and do my best not to freak out when the bad waves come through.

You mentioned that you are virtually unmedicated with the exception of a small amount of Paxil…that is amazing! If i don’t take a small amount of Benzo once a day i have lots of difficulty functioning outside the house. So i just don’t know how you made the trip??

It does very little for MAV control but keeps my mood from sliding. Whenever the dizziness hits it comes with depression and/or anxiety. Too many nights of that and I start to slide. The Paxil keeps me bouyed up after the episodes. When I got whacked on the trip I did use valium – lots of it until things settled down again.

So how are you doing currently? How was the flight back home from Thailand?

Flight was fine but I have lots of dysequilibrium and head fog right now from all of it. I think it’ll be ok in another 1 or 2 days. But then I have to go to work and sit in front of a computer screen which I’m looking forward to like a hole in the head.

I think you should go for it Joe and book that trip to Germany. Just make allowance for a bad day when you may need to have some time out.

Cheers … Scott

[Jen4205]

Hi Scott
I’m just back from a week’s holiday and have just read all your posts. So sorry to hear that the MAV knocked you around on holiday but well done for not letting it ruin the whole thing. Just for interest, I gave up eating bananas years ago…very bad for me!
Are you considering trying Pizotifen now? I have just posted an update on me since starting the sandomigran on the 18th Dec. Going really well.
Gotta run - 2 small boys demanding my attention!
Jen

[joseph0952]

Hi Scott,

As far as taking a long trip to Germany…even though i’ve made some progress in the last 10 years…in 1999 i took a trip to Hawaii…from California…and once i arrived there i started to have Vertigo episodes and severe vomitting. That is why i’m a little hestitant in going. Once the vertigo kicks in…equilibrium is a mess and then i’m a total wreck and can’t enjoy the trip. Also it can takes weeks before i get back to some normalcy. I realize that was 10 years ago and i’ve made some improvement…and it’s possible i would not have as much trouble as i think…but the worst scenerio would be vertigo (after getting off the plane)…and i nearly always vomit when this happens. So this is what i have to think about. I don’t rebound very quickly.

Joe