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Im Tired Of Spinning!!


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The dizziness/vertigo is now a 24/7 thing! Its so relentless. The ONLY time i dont notice it, is when im asleep or right when i wake up. Also the FATIGUE. OMG its so bad. I sleep around 19 hour per day and still feel completely exhausted.

I know this sounds more like CFS, but my POTS is bad too. My hr is really high. I feel sick all the time now, almost like i have been poisoned. I dont think i will get my life back this time.

Any suggestions? I just had an MRI and Echo and coritoid artery ultrasound. Ill be getting those back soon, but it will be my luck for it to all come back positive.

I just dont know where to start. I have no clue if this is an inner ear thing or a CFS thing or a POTS thing. I just cant keep living like this, its completely horrid.

I will be starting LDN again in hope that it will build my immune system. Wish me luck :[

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Hi Dani

I have just started to get vertigo on top of the usual dizziness and boy its horrible. If I turned my head the whole room spins and I feel nauseous.

For the past year or so though, my ears have a kinda whooshing sensation and amplification of sound that resonates and it hurts. When people talk to me sometimes I wince as it hurts, so was not sure if it was to do with that or if it is just another issue to add to the list.

I get the chronic fatigue, but at the moment (which is highly unusual) I actually have some life in me. And at the spur of the moment, I paid my friend a visit! How lovely it was not to feel like crap and be able to get ready and go without debating over every detail - or putting it off.

I really do hope that the results are good for you :)

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Guest letitbe

((Huggs Dani)) Does not sound fun or safe! I have never experienced vertigo but I am no stranger to severe exhaustion. People take their energy for granted.

I used to have it. If only some.

please be safe. KEEP STANDING!!!

hahaha

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So sorry Dani! I hate that you feel this way. Today was a dizzy-day for me. I think it's b/c I'm on my "dot". I've been drinking my usual 4L/day & then some but still get like this on my dot. I can't begin to understand how some of you live with this on a daily basis. I mean, I have slight dizziness daily but not to the point where it affects me. But today I thought I was going to hit the floor a few times (just from turning my head or averting my eyes). And I was sitting down!!!

BTW: what is LDN and why do you feel as though you're immune system will help your dizziness? Anyway, my prayers are that you will have more stable days!

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Have you had an ENG to diagnose where the vertigo is coming from? An audiolodist does the test, and can diagnose where the vertigo is coming from in the inner ear--or if it's a brain problem. Then they can teach you exercises to settle the calcium crystals in the semi-circular canals which cause the vertigo. Google "vertigo" and you can find these exercises online. I've found when the vertigo starts it will "fatigue" and doing the exercises has helped tremenously. Good luck--I know personally how terrible this is.

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i just did a TON of blood work the other day.. so hopefully they will call back soon and let me know. b12 was included in the panel. I would love to get the shots anyways because it helped my moms energy levels so much

Lovebug- The LDN is low dose naltrexone. I feel that the epstein barr virus is causing me all these crazy symptoms, including dizziness/vertigo from the CFS/ME. The LDN helps build up your immune system so it can fight it off. This way i hopefully wont be on antivirals for years to come lol. Those are nasty things!

zaks27- No i have not which is weird because that is the main symptom i have been complaining about. Where do you go for an audiolodist? I have an ENT and neurologist, but they have not mentioned that. My ENT did mention that next time i see her she would do the exercises. Also read that an antidepressant will help stabilize the inner ear?

Thanks again! :]

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Dani,

Your ENT should have an audiologist on his/her staff in the office. The "Exercises" he/she mentioned are probably the ones I'm speaking of. Maybe he feels he doesn't need to know the location of the problem and will just progress to the exercises. I hope he can help you--I was totally disabled with this condition--couldn't drive--never wanted to gaze more than 45% from straight ahead, as this set off the vertigo. Talk to your ENT--I think this is where your relief lies...

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YES-- the exercises do help! It's all a matter of gravity and putting those crystal where they belong in the inner ear. You may not even have to deal with medications. Good luck Dani!

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Hi Dani,

Im SO sorry you are going thru this. i too have horrible spinning & rocking vertigo in addition to daily dizziness. Have had several episodes since last fall - each lasting days. In fact I'm just on the end of my longest epis The exercises you are talking about ate called Brandt-Daroff exercises. They help if you have Benign Positional Vertigo (BPPV)

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Sorry - I hit the post button by mistake! Oops. Was trying to say that I just came off a 9-day vertigo nightmare. It's so awful to not have your body know which end is up :( its horrible and I hope yours clears up soon.

The exercises you all are talking about are Brandt-Daroffs. They are helpful if you have BPPV but if it's something else and not out-of-place crystals then they will just make you dizzy. Definitely ask for vestibular testing (ECOG, VEMP, ENG) to rule out an inner ear issue. I've had all these tests come up "within normal range" and had unsuccessful Vestibular PT - and am still seeking an answer for my vertigo. Hopefully that won't happen to you. Currently my neuro-ENT is treating it as Migraine with Vertigo Component but there is also a paper by a doctor in Japan about vertigo in dysautonomia patients. I can't post the link now as I'm typing from my phone but will try to post it tomorrow.

Take good care of yourself and keep looking straight ahead :/

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Dani,

Here's the article I mentioned before - "Autonomic Dysfunction in Patients with Vertigo". I posted it recently on another dizziness thread, but I think it's worth re-posting. I've emailed the author, who's in Japan, and am going to ask my sister-in-law to translate it into Japanese and resend it for me, hoping the doctor may be more likely to respond in his native language... we shall see.

http://www.med.or.jp/english/pdf/2006_04/153_157.pdf

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hi sorry i have not replied.. had a MASSIVE migraine last night that was awful. ugh

Thank you dizzy de! i will try those exercises and see if they help. I heard they can make it worse or better depending on the situation. I am going to print out that article and bring it to my neuro and ENT! Maybe they will get their heads out of their behinds and start listening to other alternatives. Thank you again!

Lovebug- I would definitely talk to your doctor about it especially if your levels are still really high. I tried them for a couple months and they didnt do too much, but he said it could take YEARS. omg haha that will be my next alternative if my lexapro and LDN dont do the trick.

I really would recommend the LDN first because it has a lot less side effects and will help with swelling too.

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Hi Dani

Just wanted to let you know that I had vertigo for a month straight and they thought I had Menheir's Disease, and my ENT did a hearing test that came back positive for swelling of the tissue in my ears. I do not have that disease, as both my ears were bothering me and once they pumped me full of fluids, it cleared up. My whole body had stopped retaining fluids - except my ears! I think when they got me fully hydrated again everything equalized and the vertigo went away.

Hope that helps somehow - good luck - I know how horrible it is!

Claire

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