dizziness...

[karinosa]

What do you all do for dizziness?  This week my dizziness has been really bad, when I have to get up or change to any position I do it as slowly as possible but I still get very dizzy.  This usually gets better if I take an antihistamine but this week like I said it was pretty bad, all week I felt like my head was really foggy with no chance of clearing!

My husband was suggesting I should make an appointment with an ear/throat specialist and see if there is anything they can suggest, but I'm just tired of going to doctors and everything being ok and I'm still the same as I was before all the tests and appointments.

So I was curious as to how you all handle this and what have you found it has helped - I guess for those that have the dizzy spells.

Karin

[evo123]

Heiferley I love your sense of humour - always gets a smile from me.

Well, I got some compression stockings from the doctor and they have helped me, the length of time I can be on my feet for has increased.  But they are driving me mad!!!!  I am constantly fixing them.  I have put in an order for tights and hope they will be better.  I am hoping it is these that have helped and I am not just having a few less dizzy days.....I suppose time will tell.  If it is these I would recommend them.

[Heiferly]

I have to second the vote for thigh-high compression stockings for dizziness, as much of a royal pain as they are.  And quite honestly, it's been the most miserably difficult ones--the 40-50 mmhg ones that are so tight that it's a battle with rug burn and bruises getting them on and off, and I need someone to help me do it--that have really helped.  But I guess the way to look at it is that I wouldn't go through the battle royale it takes to get those stinkers on if they weren't really helpful.  When I had lower compression stockings, I hardly ever wore them because the payoff just wasn't there.  These really do make a noticeable difference in symptom improvement.  They don't completely *fix* anything, but stuff like lightheadedness and dizziness are markedly *better* with them on.  I just wish I'd known a year ago that I'd be better off going for the stronger compression rather than choosing a lower level of compresssion; I think my doctors thought they were doing me a favor but really I just ended up with something uncomfortable AND unhelpful.

Your doctor should be able to guide you when you get the prescription, but generally speaking, probably 30-40mmhg is appropriate for moderate pooling and 40-50mmhg is the way to go for us "frequent fainters."  (Oh, if only we could accumulate "frequent fainter miles" to go towards perks like a free vacation or dysautonomia schwag.  Ha.  Hahaha.  I wonder if there would be "blackout dates" for redeeming our "frequent fainter miles."  Hahaha.)

[evo123]

I have worn knee length ones before just during and after my 3 c-sections and I didn't like them then.  But I am willing to try anything at the moment to take the edge off this dizzyness.

I hope they do help and I can tolerate them!!!

[LivingInHope]

You might want to make sure you can handle a pair of the compression hosiery such as you're going to buy- I bought a pair for a great deal of money and they were so hard to get on.  One of the toes got twisted and was cutting off my circulation in part of my foot, leaving its mark.  And also, I think it was the second time I wore them, thick as those prescribed hose can be that I got a run.  I haven't bothered with them after, but I think I still have them because they cost so much money!

[AireScottie]

Here in the US, doctors can prescribe stockings so they're covered by insurance.  I imagine you can get them by prescription in the UK too.  It's also possible to buy them yourself.  You probably want at least 30-40 mm compression.  Any less than that isn't much help.  Full length (thigh or waist high) are the most helpful.  Of those, thigh high are usually easier to wear.  Some people like to start with knee highs to get used to them.

Long term, treating your low vitamin and mineral levels will definitely help!  It might take a little time to notice the difference.  B12 especially should make a difference, because lack of B12 kills off autonomic nerves.  It can't hurt to try getting those levels up for a few months and see how you feel.

[evo123]

Where would I get these from in the UK?  Or would my doctor be able to give me a prescription for them?  

I have started taking iron tablets as I have low ferritin, and I have low B12, low Vit D also  (untreated), so I wonder if I address these problems will I be less dizzy.

[AireScottie]

Forgot to mention, the stockings can make a difference even if your BP goes up.  Since they help with pooling, your body doesn't feel like it has to overcompensate by shooting your BP up.

[AireScottie]

Wish I had some words of wisdom for you, but I'm dizzy all the time :P  Have you considered getting compression stockings and only wearing them on days when the dizziness is bad?  They're the only thing that has made a noticable difference for me, and even then, they just decrease it.

[karinosa]

My BP goes high too withany movement, my Dr. sent a request to have a 24hr BP monitor but I'm on a waiting list of 6 months!  She is still skeptical of the Cardiologist diagnosis of P.O.T.S but whatever I know what I have and I have told her how much my BP varies and how it is normal if I just lay down, what concerns me about that is that if there would be long term effects on my heart/body with the constant up and down of the BP?  I don't feel sick with the radical changes any more though, but the dizziness definitely is hard to take!

Let's see if there is any others input on this : )

[evo123]

My dizzyness has been really bad too this week.  I am okay until I get out of bed and then - wham - 10 minutes later it's with me!!!!  I have not found any way to relieve this yet so would love to hear some tips on what helps.  

I was wondering if it could be ENT related.  I have had two major surgeries on my left ear but it's probably just part of whats going on with me!!!

I drink plenty of water (i'm constantly thirsty) and my bp jumps up rather then down when i'm upright.  So i'd love to know what we can do to ease this.