tutorial in the middle of my bad time of day...adverse effects!

[persephone]

Hey guys,

Just wanted to see what you all think. I've been donig really well as you know, but over the last couple of days I've declined a *little* bit- yesterday was truly terrible. I was at a party on Saturday night, had 3 drinks all night but was so wasted I can't remember how I got home- I would never normally get drunk like this- I am convinced that someone spiked my drinks with stronger alcohol.

Anyway, I had a really good tutorial today but I don't know what to do about the fact that I'm starting to notice the tiredness getting to me between 4 and 7 pm again. My tute was at 5, and it was fantastic- a really good class, nice people, lots of fun, went on til 7.15. BUT I'm worried that this time isn't good for me- by the end, my head was throbbing- it still is.

I normally have to eat between 5 and 6 or I feel odd. I tried to eat something before I went to class at 4.30 but it obviously didn't do much as I was starving by the end. And pretty unsteady, too.

I dont' want to as the tutotr to change her timetable for me- she had to do this last term SO MANY TIMES I really would be imposing ifI asked again, and besides, she explained to me that this one slot for us is pretty much all she has available this term.

In case any of you have been following my threads and posts, this is the wonder woman tutor who empathises fantastically and without whom I would have left Oxford within about 3 days!

Can any of you offer tips on what might help me to last the whole two hours without a pulsating headache or ending up tachy by the end?

She knows it helps me to sit cross legged and thinks nothing of letting me sit with my feet up on the couch like a little elf!!! She's always so understanding, but I can't get the class time changed- it woudn't be fair on the others, or on her as this is the time she has assigned for us...

Any ideas? I've been donig so well, and I want to keep it up, but I can feel the slippery slope of tiredness trying to get a grip....

[momdi]

Hi,

It is so encouraging to hear of your perseverance.

We just came back from seeing Dr. Low last week and he had one piece of advice in particular whenever you need a good 2 hours...

Drink 16 ounces of water pretty quickly. Since most of you all drink huge amounts of fluids, this may seem like nonsense, but he says that there are receptors in everyone's body that will respond to this rapid fluid load and give you about 2 hours of upright time. My son tried it last night when he had to drive to a friend's house. He's not sure it helped or not, but I think it's worth at least a couple of tries.

Good luck!

[persephone]

ooooh....fab tip, thanks very much! how much is 160z in metrical terms? Is that like a pint or something? A litre? sorry--being dim

[Evie]

hehe i was wondering the same thing, when i get home later i will look it up on a online conversion chart to see how much it is in L.

Are you able to eat in the tutorial? I went all dizzy once in a tutorial and left to get a cup of tea. I had previously told my tutor that i may need to do that from time to time. I dont know if any drinks work for you but maybe you could have a little pack/flask ready just in case?

[michiganjan]

I was going to suggest drinking during the session or even eating, if possible. I really liked hearing about Dr. Low's water trick. I am going to try that myself.

I have learned never to go anywhere without food and a bottle or water.

Would a nap earlier in the day make any difference?

[goldicedance]

Further to Dr. Low's water trick: Use ice cold water!!! That's what he told me to do each of the three times I have seen him. He calls it a "self-infusion."

[JaneEyre9]

That water trick is awesome. I didn't know about it, but by accident, I found it works! A few times this summer I got really symptomatic in public and didn't know what else to do but drink water!! One time i was at a restaurant ordering 2 glasses of water at a time. It did the trick. I made it through the whole meal upright

Kristen

[persephone]

I take water everywhere I go with me. I got through half a litre and was still parched come the end with a throbbing head

maybe the water isn't working for me

and today has been a complete waste of time I feel SO rubbish- don't know how I've managed to stay upright :(

[Guest CyberPixie]

Are you able to tolerate caffeine as that works for me. Also see my recent post about potassium deficency as thats helped me feel less tired.

[Laura]

Hi!

My doctor just told me about that on my last visit. He said they've found that you have to drink the full ammount very quickly - it doesn't seem to have effect if you simply drink alot of water spaced through the day. You must drink about 1/2 a liter (500ml) quickly to feel the benefit, and do this throughout the day. He said it affects the receptors that tell your body to retain the fluid. Interesting! Laura

[Wufflebear]

yea, I too stumbled upon this one by trial and error. It does help buy me some time too.

[taylortotmom]

Hi, Persephone,

Glad to hear this semester is going better than last. Let me tell you about some of my secrets: water and peanut butter crackers are crucial. Better still for me is milk because it is a protein. For some reason, salty peanut butter crackers and milk/or water can keep headaches at bay. Peanut butter crackers are one of my most significant "helpers". The salt helps, the protein helps, and they're filling so they keep me from getting a hunger headache when I'm in a situation when I have to eat at odd times. Hope this helps!

Carmen

[persephone]

THanks Carmen! Part of my problem is being lactos intolerant and gluten, too.

But I have salty wheat free crackers- maybe I'll have some of those right before I go into class. or a banana!

Or some irn bru!

I had coffee just before yesterdaym, and I think it might have triggered my really bad headache, or at any rate made it worse. It also gives me ectopics. I'm surprisedat Cyberpixie being able to tolerate it what with all her conditions and what not. I thought caffiene was bad for all post folks?Or am I wrong?

[Guest Belinda]

Persephone-Keep your head up girl..you were doing so well and I am learning that some of it is attitude even whe nyou still feel poopy!

I 2nd the water deal have tried it ..pretty neat how it works.

Oh and coffee, the thought scares me..Too many PVC's for me even after chocolate.

And I am suprised to see you can tolerate alcohol to some degree(LOL). I often wondered about it, having a glass of wine /or shot once in a while would be nerve calm,ing! Worry about it raising heartrate.

Don't let the bumps in the road get you down...YOU CAN DO IT!

Take care, Belinda

[persephone]

thanks for the encouragement, Belinda! I'm DETERMINED to do it--I've never been more determined about anything in my life.

Today, my tutor said "do you need me to stay?"

and I replied "Nope, because I'm going to be fine" (I was sitting on a ledge outside the faculty building like an elf, as I couldn't move any further).

And my heart was going BANG BANG BANG...shaking and everything, I was.

She said "should you bring your stick next time?"

And I said "nope, because I'm telling all this to just GO AWAY! Mind, if anyone looks at me wlaking today they'll think I'm drunk and it's only 11am!!! "

We both laughed then and made a joke of it. Best way to deal with it, I reckon....

[Guest CyberPixie]

THanks Carmen! Part of my problem is being lactos intolerant and gluten, too.

But I have salty wheat free crackers- maybe I'll have some of those right before I go into class. or a banana!

Or some irn bru!

I had coffee just before yesterdaym, and I think it might have triggered my really bad headache, or at any rate made it worse. It also gives me ectopics. I'm surprisedat Cyberpixie being able to tolerate it what with all her conditions and what not. I thought caffiene was bad for all post folks?Or am I wrong?

Heehee, I'm fine with caffeine, my endo prescribed it for me. He does a lot of research (and does lectures in Europe) into dysautonomia and caffiene. He told me what you've heard about it isnt true, it's not bad for your health, doesnt have any effect on a dodgy tum and he has had success at getting people with POTS 50% better just with caffeine. FOr me I wouldnt say it's worked that well but it has helped a little. Everyone's different though and some will be more sensitive to it than others. I take 3 50mg pro plus tablets throughout the day plus 2 cups of coffee and one drink of cola and chocolate when I feel like it!

[persephone]

great that it works BUT

a) what about the tachycardia? caffiene can knock people into arrhythmia even if they're fully healthy

and

how on EARTH do you get to slep consuming that kind of quantity of caffeine?

Hey, I should say to whoever it was who recommended gulping the water

MY GOD

what a difference!

So I slept in again this morning but I made it to class on time, and made sure that I had TWO bottles of water with me.

I gulped the first one straight away and noticed my concentration was much better

and the second one I did in the second hour- I'm still ok now! No headache either. Maybe I have been inadvertently dehydrating myself?

I do drink all the time but the trick does seem to be necking loads in one go!

Hope this can help other people too!!!!

[Jacquie802]

The whole water thing is funny. I have had docs tell me to drink water, but I took it to the extreme! In my car there are at the very least 9 water bottles. Whenever someone gets into my car there is always a comment about the water bottles! I used to bring 3 of them with me when I went to my EMT course. It helped alot during the nice weather days, but on the hot, humid ones it didn't do a thing. If you ever see me though, it's always with a bottle of water.

[Guest CyberPixie]

great that it works BUT

a) what about the tachycardia? caffiene can knock people into arrhythmia even if they're fully healthy

and

how on EARTH do you get to slep consuming that kind of quantity of caffeine?

Hey, I should say to whoever it was who recommended gulping the water

MY GOD

what a difference!

So I slept in again this morning but I made it to class on time, and made sure that I had TWO bottles of water with me.

I gulped the first one straight away and noticed my concentration was much better

and the second one I did in the second hour- I'm still ok now! No headache either. Maybe I have been inadvertently dehydrating myself?

I do drink all the time but the trick does seem to be necking loads in one go!

Hope this can help other people too!!!!

No, the caffiene doesnt start the tachy off. The only times I get tachy now is after eating too big a meal or with stress and the odd occasion when I have no idea what's set it off.

Doesnt stop me sleeping either as long as I dont take it after 5pm.

My endo told me to take 500mg a day.

Be careful gulping huge quantities of fluid in one go, that can upset your electrolytes. It's as bad taking too much at once as it is taking huge amounts throughout the day. 2 glasses in one go is fine though, have had to do that myself few times, but otherwise I sip sip sip constantly all day! (Drives me nuts!)

[momdi]

Cyberpixie,

Good point about not taking too much water at once. It's so easy to slip into the *more must be better* mentality. Dr. Low's recommendation is for only 16 ounces of water, but quickly.

I have a question about the caffeine. Do you have high neurotransmitter/norepinephrine levels? I believe it would be called noradrenaline in the UK. I'm just wonder ing if caffeine is ok with that?

Thanks,

Edited January 27, 2006 by momdi

[Guest CyberPixie]

Cyberpixie,

Good point about not taking too much water at once. It's so easy to slip into the *more must be better* mentality. Dr. Low's recommendation is for only 16 ounces of water, but quickly.

I have a question about the caffeine. Do you have high neurotransmitter/norepinephrine levels? I believe it would be called noradrenaline in the UK. I'm just wonder ing if caffeine is ok with that?

Thanks,

I have no idea! If you mean the adrenaline surges, I do get those. But bascially the medical profession arent that interested in helping me, they never have been my whole life. I have diagnosed everything wrong with me myself then just sought out the right dr to confirm it. Apart from that, no ones interested in doing tests on me, nor explaining things to me (I've had to research loads myself), nor wanting to help me get better. Pretty much on my own, I'm thankful I found at least one thing that worked (the potassium) without it I'm sure I'll have died, I was almost unconcious for about 7mths last year.

Something interesting I did find out couple years ago. I took Sudafed for a cold for 3wks and that made me better too, lots more energy and feeling more normal. Think I'm just one of those rarer POTS people who does well on stimulants.

[faithinspires]

Hi! I have been following your posts with regard to your schooling...I agree you have amazing determination! I too use salty food and water with salt in it to try to help. Right now nothing seems to be helping...not salt...not water...not caffiene...I joke that what I really have is "The sleeping disease".

I do agree with the others suggestions though, the snack & water trick seem to work for my daughter.

You have my sympathy...hope your tiredness improves. Rest when you can and know that I find your determination to be an inspiration! Renee