dizzyallie

I'm the same. Can't stand still. Get so dizzy blood pools. My feet turn bright red. I'm always shifting weight how I stand. Fidgeting and tightening leg and bum muscles.

Hi Sarah! Still here been pretty rotten. Thanks for noticing. Hope ur managing ok?

Yes very bad for past 5 yrs. patterns, stripes, carpets, anything makes me more vertigoey if that's a word. It's been there so long now I don't even remember a time not feeling it.

Wow, sounds odd but I am glad they have at least found something because when you feel that rotten, you ll take anything. I pray that it lessens her vertigo somewhat with the draining. Have sent you a pm. Allie x

Lovely dizzy girls, a lil something positive. Good for her.

I hear you and feel for you it's not pleasant. I get like this after car rides anything longer than say 40mins will leave me rocky, swaying like I'm still moving for a while. I think it's a bit of mal de barquement syndrome. Nothing really helps. I take stemetil before long car rides now. Elevators sometimes have same effect. Sorry dizzy girls for your daughters, how disappointing.

Unfortunately dizzy girls I relate so closely to you all. For me, with the horrid dizzy head, I have ME/CFS. I am as you describe. In constant states of boom and bust. I do the smallest of things, and I react badly after. That's CFS. Or I'm just bad from the get go. Thinking of you and your girls.

Pooter, I feel for you, really do. I had exact same problem as you 13 years ago. So, had subtotal colectomy. Any questions fire away! Can sympathise what ur going thru x

Hi all, I am curious, I'm seeing a specialist in this in a month. The same specialist who started me on my beta blockers for pots. I just don't know what exact things I should be asking for to help with my symptoms? Besides florinef. I remember something about h1 and h2 receptors. I guess I just want a work up on dysautonomia but have no idea where to start. My main issue is dizziness. And new symptoms of burning face and ears, that turn bright red. I know it's to do with histamine but I'm not sure what I should be doing to treat it? Any advice?

I dunno targs I haven't laid flat to sleep since 2010, it flares my dizziness bad and then I get vertigo. Even when I've had mri s it's been really hardon the head. I remember my spec saying laying your heart should be lower than your head.

Hi bigskyfam. I was told to raise it using bricks. Couldn't raise it enough so I bought one of those triangular wedge things. Helped a li, that was a few years back. Now I just sleep with 2 pillows. Sometimes I feel the need to drop my head tho, can't explain it. Too much elevation can worsen me.

CFS is a very real disabling illness. It has robbed 12 years of my life. It is really a form of dysautonomia. The name is being changed to systemic exertional intolerance disease. If you google that, along with new diagnostic criteria u ll find stuff. I watched the I O M video yesterday on it, a lady doctor spoke fabulously. Pointing out how the name CFS trivialises it. Which it does. I hope to raise awareness of this very real illness. Some docs shrug at it, like psychiatrists who just say somatisation....what a croc. But a good doc in this day and age will realise the gravity of it.

Oops. Unfortunately there isn't much in the way of treatment. But of late promising research is coming out. I think if you type in iom report on systemic exercise intolerance disease. You willl get some idea.

CFS/me is currently getting a lot more credibility. There are set criteria that must be met. I think it is on the I.O.M site. Plus it is in the process of being called systemic exertion intolerance disease. They are finding blood markers as we speak. Mine began after major surgery and has left me almost house bound. I have pots on top and get told a dysautonomia component. It's an awful thing. I am in Australia btw. Was diagnosed by rheumatologist sand an immunologist after bloods ruled out lupus.

Hi Michele, sorry you re having a harder time than normal. Sadly I too get like this. Mine is the CFS I have had for 12 years. Lots of the time I can not even take in a conversation. I can't hold a conversation and even listening is too much. I really struggle on the phone and am generally in need of a lay down afterwards. Our bodies just tire so easily. Only yesterday my mum was talking to me as I lay on my bed and I barely had the energy to reply or take in what was said. I needed absolute quiet so my body had no stimulation. I get where you're coming from.

Thank you everyone for your kind thoughtful replies. I've actually written a letter to him, saying how somatisation is used when symptoms are not attributable to a medical illness. CFS and pots are legitimate illnesses. CFS is currently being redefined and renamed as a disease. Yes, the period comment, inside I actually laughed. He was a nice enough man but unfortunately, only aware of conditions within his area of specialty.

Thanks Sarah for the support, sorry you've had this experience too. So ill informed some docs. Especially psychiatrists. Thank you for the links, I'll look at them. Not all would be like this I know, but when you come across one, as ill as you are, it's just hurtful.

Thank you for all the replies. I am trying to de stress from these comments from this guy but I just can't. He talked about somatic being a problem with cells, cytokines, energy but then says somatoform disorder ... Meaning unexplained medical symptoms. Our medical symptoms are legit. CFS, pots is legit. I have a diagnosis. He even said period pain falls under somatoform. I'm just angry. He didn't mention psychosomatic. I too have reactive depression xrobin, who wouldn't hey. I have been seeing a psychologist the past year for the depression. This guy was merely an appt to ask about meds. But he still gave his 2 cents on my medical conditions. I got the impression, to him, CFS, pots etc is all rubbish. Now I'm just hurt. Trying to switch off katybug coz I know how damaging it lol be otherwise. So hard. Thanks again everyone and for the link xrobin.

I can't believe it. After 12 years of CFS, 5 with POTS, I went to ask a psychiatrist what meds are available depression wise for me, should I go backwards. He first started by asking who diagnosed my illnesses because in psychiatry we call it somatic. I'm so offended. He said it's the same, autonomic messages aren't right but the code in psyche talk is somatic. It is not the same thing at all! I came home and read up on it, now I'm just insulted. I called his rooms back today. I said yesterday, no I do not agree with this. But I need to really voice how against I am with this crap. CFS is a real medical illness. Somatic implies you have all these symptoms, no medical basis or diagnosis for it. I'm waiting for a call back. If I get one. What's wrong with these people! my psychologist is fantastic, this one off psychiatrist re meds has no idea.

I'm like you Artluvr. Only one I can use is herbatint. I bought it online. Got light blonde and it worked well. No stench either. I was going to try olia but thought all the extra oil would give me pimples probably. I get too sensitive to things.

Hey there, well I'm not sure. I think the brain stem dysfunction came from the Cfs/me to be honest but I might be wrong. Sorry you have bowel issues too. Mine was removed due to blockages, motility disorder, prolapse and pain. I could barely tolerate food and was living on laxettes to use bowels. Was awful. I don't regret having it out at all. Sadly though I've had the CFS, pots, dyes autonomic, dizziness as a result I think. It triggered it all I guess. Sorry your son has chrons. A friend of mine has it too. Awful thing. By low Gi it's just slowly sustained blood sugar level regulating foods. I do it for my cfs plus I'm borderline diabetic. So it's eating like you have diabetes. Foods that sustain you longer eg porridge, bananas, etc. I've had to cut out packaged foods, sugars etc that cause glucose to be all over the place. I hope you can get somewhere with your symptoms too. and that they can offer you some treatment options. All the mthfr stuff is soo confusing!

Yep artluvr me too. Plays havoc with head. I find this all the time when I trying to hang stuff on the clothesline. The whooshin I get I figure is air movement. Its annoying but I dont know any different 5 years on now.

Haha chianti I meant chiari

Hi dizzy girls, I ve thought of you all often after reading your story few weeks back. Think I commented there but not sure what I said ... Der. Great brain. No I don't think I have a chianti malformation. I just get told brain stem dysfunction, like something in my head has been tipped upside down. Hmmm my symptoms, all over the place. I find typing even this very hard. My eyes jump, and my brain tires quick. The dizziness began as vertigo then stayed since August 2010. It was horrific for the first 3 years. The past year hasn't been as awful by comparison but it has still been **** if that makes sense. I find all tasks hard. Looking at people, trying to shower, looking at tv, it seems wherever I go it is with me just at a varying level. Even trying to wipe myself on the toilet. It's a constant state of disequilibrium. Sometimes it will wake me at night with a jolt. It is an awful way to live to be honest. I can only walk short distances say 20 to 50 metres, and at my worst, I can barely do 5 metres or stand beyond 5 minutes. All tasks are hard eg making a cup of tea, sitting in a car, talking. On top I get the spinning vertigo that hits when it wants. All I can do is take stemetil and not move. It is frightening being always dizzy, like your head is full of water. Nothing has been able to help me except, pushing myself to move when I can. Or practice sitting in chairs etc. I try to maintain movement because if I don't i know I will be worse. Very hard though, by afternoon I've usually hit the wall and need to lay back. CFS definitely has a part to all this. At my most exhausted the dizziness is cruel. Feel free to msg anytime. Thinking of you and your daughters. I hope your daughter can get her bone tended to also and find some relief. Best wishes to you all. Btw, Even this post, I have typed in stages. Head movement also is a big issue for me eg looking down.

Yes heat is a shocker for me. Heating in rooms makes me sick too. Stink bugs in the air con, yuk huh. I just get mosquitoes here in Australia. I'm praying for winter, minus the use of heaters of course. I soooo get where ur coming from.