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My Dizziness Not All Pots, Doctor Says


dizzyallie
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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.

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Hi Allie.

Sorry you were in the hospital but I'm glad you got more answers (I assume they were more and new). I've wondered also why i'm still lightheaded and dizzy sitting down. I'm with you about not coping well, it's been almost a full two years for me and being lightheaded every single day, i'm sick of it. So, I'm there with you!!! I hope the new meds and/or strengths help out, let us know how it goes.

Traci

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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. :)

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

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Dizzy is my life too - I'm so sorry you have to deal with this. Have a few questions. I think of vertigo as a symptom, not really a diagnosis - do they think you might have Meniere's or another condition that causes vertigo? What does brainstem dysfunction mean exactly? Was there some test for this? And when you say dizzy, what do mean... spinning, rocking, spacey, floaty, lightheaded etc.? For a long time I didn't believe POTS could cause this constant dizzy feeling (mine is spacey/floaty), but try as I might I have not been able to find another cause and with so many of us POTS people having this symptom, I'm starting to think it's from the POTS.

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I go through phases where I'm so lightheaded all day every day for like 2 months and like you, it is not positional. I also get episodic Vertigo where all of a sudden the room will spin for a couple seconds. That is also not positional for me. I'm so sorry you are going through this. I had it from week before Thanksgiving till first week of January. It is so awful because you can't concentrate on anything but the constant lightheaded feeling. I pray you will get an answer. This may sound weird, but have you tried drinking any alcohol with this? Myself and a few others on here feel less lightheaded when we drink. It may make it worse, but I think it helps some of us because it calms down the CNS.

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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!

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dizzyallie it sounds like the vertigo you're describing is coming from a dysfunctional vestibular nerve. Have your doctors suggested vestibular rehabilitation therapy? (VRT) Doing some gaze stabilization exercises as well as balance retraining might help your vertigo however it won't do anything for your lightheadedness.

I too have been lightheaded for a long time, I'm finding aerobic exercise to help me with this. Long periods of jogging (>30 minutes) seems to increase my blood volume, increase my parasympathetic nervous system, decrease my heart rate, and increase my heart's stroke volume. But definitely start at your own pace it took me a while to get to >30 minutes of jogging.

I would suggest you talk with your doctor about starting an aerobic exercise + vestibular rehabilitation program.

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Yes, it's total bull that 'no patient has symptoms sitting.... it stops.' Like ****, it gets worse. Many people with pots sit in chairs with their legs crossed under their bums -- the semi lotus position. I have a desktop computer at the moment and eventually I go potsy if I stay on it too long. Keeping my feet up means I get a longer time on the computer but eventually I go foggy, flush, feel sick and get tachy, and it can often bring on my gut pain.

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Like Jangle, I'm one of those pots people that exercise does help. Most of the time. I try to keep it up because, on balance, it makes me feel better. There are periods when it causes me to have that old battle with gravity and I'll not be able to exercise for a month or so but I wouldn't be starting over on my walking program repeatedly if it didn't help me more than hurt me.

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Thanks Jangle, I'll try the epley manoveur for sure.

I was astounded when I got to this part of the article:

-------------------------------------------------------------------

"

3. For at least one week, avoid provoking head positions that might bring BPPV on again.

  • Use two pillows when you sleep.
  • Avoid sleeping on the "bad" side.
  • Don't turn your head far up or far down.

Be careful to avoid head-extended position, in which you are lying on your back, especially with your head turned towards the affected side. This means be cautious at the beauty parlor, dentist's office, and while undergoing minor surgery."

-----------------------------------------------------------------------

I live like this. No one told me to do it. It's just my body's instinctive adaption to this problem. But seeing this in the article got me thinking. Interestingly, (interesting for me, anyway) when my migraine/pain specialist had me doing feldenkrais with a practioner he recommended -- she'd have me lie on my side. I insisted that I needed a pillow which was fine by her. And she'd make the most gentle adjustments to my body. So gentle and minute you could hardly feel the difference but everything sort of 'felt right.' All very lovely until she got to my kneck. Just moving it up, extending my chin up -- as gentle as she did it -- made me instantly sick. I'd want to throw up straight away and I'd tell her to stop. She'd stop. My pain specialist said it was because of the damage done to my kneck when I was 20 -- I'm in my 50s now - but after reading this I think maybe that although there is damage to my kneck it was more to do with balance/dizziness. I don't know, It's hard to separate the kneck -- migraine - dizziness problem.

I should imagine that with vertigo going to the toilet for a man is a real challenge. I thought I had it bad. I usually crawl from the bed or couch to the toilet and then faced with having to try and partially stand up so I can sit on the toilet I'm always thinking, "why do they make these frigging things so high."

Okay, I'm getting potsy. I have just spelt 'neck' as 'kneck' numerous times here. Time to get off computer and semi-recline on lounge.

blue

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...

I should imagine that with vertigo going to the toilet for a man is a real challenge. I thought I had it bad. I usually crawl from the bed or couch to the toilet and then faced with having to try and partially stand up so I can sit on the toilet I'm always thinking, "why do they make these frigging things so high."

Okay, I'm getting potsy. I have just spelt 'neck' as 'kneck' numerous times here. Time to get off computer and semi-recline on lounge.

blue

:lol: The standing folk are cruel to us.

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Yep me and my children have constant light headedness with dizziness when we move our heads at all regardless of body position, also long bouts of debilitating vertigo. It is a a running joke in our family that we have to pair up my daughter that walks to the left with my son that walks to the right so that they can walk in a straight line!! LoL

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Yeah, same with me with the neck thing. I have to make sure my neck is perfectly straight - even when sitting to watch TV. I have to have my chair positioned just right. I sleep with two pillows under my head and one under my back - so there is a gentle slope up of my body. I have to do this. I can barely sleep on either side, because it will cause me symptoms. I thought allot of it was because of EDS and connective tissue disorders - not holding things in place. But, maybe there is more to it than that.

Issie

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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

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dizzyallie

Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue condition characterised by skin extensibility, joint hypermobility and tissue fragility. There are six different types of EDS and they are classified according to signs and symptoms.

EDS is caused by a defect in a protein called collagen. There are more than 30 different types of collagen and it is the main building block of the body providing strength and support. Examples of areas it affects are ligaments, tendons and organs. Consequently, when the collagen itself is defective, it can produce many problems throughout the body.

The prevalence of EDS is known to affect both males and females of all races and ethnic backgrounds. The exact incidence is notknown, but is estimated at 1 in 5000, however, research is showing that it is more common.

Diagnosis is based on the presenting symptoms and family history of a patient. Many EDS sufferers, however, do not fit conveniently into the definition of a specific type, and are frequently misdiagnosed.

A skin biopsy may be taken to confirm the diagnosis and determine the type. Of the six types of EDS, the Hypermobility type is the only one that does not have a specific test. In the other five cases, the specific gene mutation has been identified and can be tested for.

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