dizzyallie

Thankyou all for the replies. We are in summer her in Australia, so hot and humid but I am in air all the time. Like you Sarah I barely leave house, not well enough to - especially in warmer weather.

I get very clammy too artluver,not dripping sweat just clammy all over. Again this only started early december after 11 yrs being unwell. Kind of at a loss. Must be the symapthetic nervous system momtoguiliana - my gp said same thing. I just wish there was some treatments to help.

Ta guys, Allie x

Hi guys,

I am at a loss. I don't know what exactly med wise should be benfitting me at this moment.

I take endep at a low dose, beta blocker, sandomigran, vitamin b, vitamin d and megafolinic acid.

I am thinking about trialling fludrocortisone again - although I think it made me worse last time?

I am at a loss. Period. I don't know what to take to help this sick body at all anymore?

I am seeing a rheumatoloogist next month to rule out lupus but meantime I find I am getting sicker and sicker.

Any advice would be greatly appreciated.

Allie.

I hear you Goat and feel the same way. I too am under a thereapist, there is a lot of loss that goes with chronic illness. I have been dizzy now 4 and a half years constant, with all other dysautonomic symptoms - its the pits, really is. But I have learnt that it is NORMAL to feel such sadness and grief for where we are at. Still, makes it very hard, and unfortunately depressing. I do hope your therapist is helping you. I find they are beneficial in getting you to open yourself up to let yourself grieve. Hugs to you x

Hi everyone,

I have a question for you all, how many of us have problems with daily sweating? This symptom is new for me, started about a month and half ago and is really awful on top of all other symptoms. Yes we are in summer here in Australia but I sweat regardless, even in cool air conditioning. Any ideas to help this? I am upping my beta blocker propranolol to 20mg but hasn't helped so far

Firstly, thaks all for the replies! This is the best forum.

Yeah Naomi I agree with you - am concerned bout the building up of fluid in ear. Nothing exactly diagnosed - just BPPV and vestibular dysfunction. One treatment for POTS then the complete opposite for ears!

Thankyou everyone. I will have to keep an eye on potassium levels. I don't think I've been drinking enough with it - doc didn't even mention to!!!

The hard thing is I have been constantly dizzy prior to the florinef so.... oh man will this dizziness ever stop!

As POTS doc said - POTS doesn't care what position the heads in - hence I am dizzy with all types of head movements eg to the left and looking down is worse - and that bit aint POTS????

So incredibly frustrating

Thankyou all again x

Mine is low - but don't know the number? Doc has me on a weekly supplement of it tho. Just started 2 weeks ago.

both! big problems moving head position

Thanks Sonya, yeah I only recently read to up water and salt - why doc didn't tell me I have no clue - bloody useless! Did it help the dizziness then?

Hi everyone,

I have been taking florinef .1mg now for 3 weeks but find I am worse. The dizziness is definitely worse. I am in tears.

Can barely get to the toilet - and barely shower. Standing is cruel. I can barely manage 5 mins.

I think it's worsening my vertigo/dizziness feeling, anyone else found this??

Thanks

Yeah me too back head pressure right now it's there

Jangle doc says I do have bppv, have had the epleys which made it worse. I am just so over being dizzy 24/7! with this vertigo on top.

Glad to hear the exercise has helped you though - yeah very difficult with me at the mo.

I will keep at the VRT exercises but you'd think by now there'd be improvement not a decline in health

No nosleep study done - meant to have one in hospital but never happened

Thanks for the reply

hmm some interesting info - thanks Anna for explaining that.

The VRT doesn't seem to help me. Nothing seems to help.

Might ask bout that clonazepam when I see a doc next?

I think the doc I saw was a clinical pharmacologist? I tried the neuro otologist at the 7 month mark and found nothing?! said maybe its psychological!!!!

Anna and Issie I can fully relate to what you're both saying - sounds like me. The extra vertigo sensation with head movement is just awful - so limiting!!!

can I ask what EDS is? Hope today is being a bit kinder to you all.

Thankyou again for the replies xx

Thankyou Naomi, Jangle and Julie - so good to get feedback re this.

My dizziness is all the time - spacey, rocking, swaying, some spins, like on a boat feeling - and then I get vertigo on top where things spin. It's worse standing, sitting, moving and my head position up/down etc. I am so unbalanced. I walk like a drunk. Always tilted to the right hitting the walls!

All along they have said my brainstem isn't working right but again no test or treatment for it!! More than likely it is from the CFS.

Thanks Jangle - I was so upset when she said "no pots patient has symptoms sitting...it stops" as I knew I had heard so many others complain of this still.

Julie - you are right I can't concentrate on anything with the dizziness not even conversations it's just so hard. Perhaps I may try a beer one day, although I already feel drunk!

Same Mary - god I feel for you. Dizziness is my life too and boy am I over it. So limiting

This is so interesting. I am still dizzy as sitting! Feel like I will fall off chairs. Even on the toilet!

I am better to keep moving a lil but am so limited to even move! I am house bound.

I saw a POTS doc this week who told me "POTS patients are only dizzy standing up - when they sit it goes away" which left me more confused!!!!

Thanks Traci. I feel for you too - a full 2 years being dizzy is too much isn't it!!!

I just can't do anything. Really hating days now.

You're still dizzy sitting too huh - according to doc,POTS patients don't get dizzy sitting but I don't agree. I've read people have.

Maybe I'll do a poll.

Take care to you too.

Hi everyone,

I haven't been here in a while. Been in hospital. Seems my constant dizziness has 4 causes - CFS/ME, POTS, Brainstem Dysfuntion and Vertigo. Plus deficiencies in Vitamin b12, D and low DHEA and high cortisol.

Trying Propranolol at 20mg and Fludrocortisone at .1mg but am not too hopeful.

As the doc said to me "POTS doesn't care what position your head is in" as I am extremely dizzy with every head position. And still dizzy laying.

Not coping too well, after 19 months of constant dizziness, I've just had enough.

Glad I found this forum.

I'm sorry you're having such a rough time Bren. Yes the dizziness is my biggest problem - HATE it! I hope they can help with the MCAD diagnoses for you - many hugs back

Thankyou so much for the replies - just what I was after

I too am sorry to hear that Bren - makes you wonder bout the med side doesn't it? I want so badly to get some help. The dizziness is the absolute cruellest for me. Perhaps I should try the florinef down the track. Does your zyrtec help?

me too guys - doesn't matter what position I am in, my head feels empty. Too dizzy 24/7 so intense. At times can't get out of bed either Bren - well lots of the time!

It's so cruel this illness Have started 1omg Propranolol and awaiting spec appt for more advice.

I too am most definitely dizzy sitting - eating meals is excruciating, even typing this is hard! I wondered if POTS patients felt similar too.

As I'm new to this, is there a section devoted to this? thanks

eg: using a wedge or pillows to raise legs

Thankyou both - yes I am no good in any position - high, low it's all bad. I think I just keep head elevated a lil coz I get vertigo on top.

I forget how I used to sleep prior POTS - it was wonderful!

And gettin up in the morning is just as bad