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About dizzyallie

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    I'm 36 and have had cfs/me for 11yrs, POTS for the past 4. I mainly have problems with 24/7 dizziness and fatigue. Diagnosed migraineous vertigo 2015. Ive also been dealing with depression the past yr. Unable to work, largely house bound but I push myself to do what I can with what I have.

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  1. 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.
  2. Hi Sarah! Still here been pretty rotten. Thanks for noticing. Hope ur managing ok?
  3. 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.
  4. 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
  5. Lovely dizzy girls, a lil something positive. Good for her.
  6. 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.
  7. 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.
  8. 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
  9. 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?
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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