Vertigo & Dizziness

[ethansmom]

Hi everybody! It's been forever since I have had a chance to stop and say hello. My daily health challenges coupled with raising two active toddlers has decreased my computer time significantly, but I think of you all often.

Over the past 17 months since my second son was born, I have done very well and the only med I have taken is the beta blocker. Over the summer I began working full time (from home, but working nonetheless) and it was then that I realized I was becoming more and more fatigued and drained. I cut back to part time in October and recently began experiencing a type of dizziness that is new to me. I have always had spells of lightheadedness that would range from mild to severe at times.

But this symptom is different. I wake up in the morning many days with spinning vertigo, and it can be somewhat releived by standing up and moving around, but it still is very uncomfortable and makes me nauseated when I look any direction other than straight ahead. It waxes and wanes, and sometimes lasts for days before I get some releif. I also have pressure/fullness in my right hear and some minor pain, and that ear is very sensitive to noise. I have been to 3 doctors and they can't find anything wrong (no infection or anything) and I was tested for BPPV which was negative. They want to send me for a million tests that I have already had done since having POTS and don't care to repeat, and I don't know if this could be POTS or Lyme or both?! I was diagnosed with Lyme in 2004 while pregnant, and my doc thought I could wait to get treated until after pregnancy and breastfeeding were done...since I was feeling well I guess I put it off too long. I have been seeking alternative treatments recently and am hoping for the best with those.

I would like to know if anyone else experiences the spinning vertigo, fullness, and pain as I don't know what it could be.

[Guest dionna]

i don't know about lyme but i have the same problems with pots. hugs to you!

dionna

[MomtoGiuliana]

Hi Jessica!

I already answered you via e-mail, but when my POTS was very bad I could have that spinning sensation go on and on for days, along with low grade nausea. Recently I had a very sudden recurrence of it. One morning I woke up and stood up and the room was spinning. It got worse over a period of hours and I took off from work--something I had not had to do for awhile. After that, it SLOWLY got better. I am still getting it once in awhile when I move my head fast, or get in certain positions. I had talked to my specialist's nurse about it and she basically said "sounds like POTS" and recommended fluids and salt. She said basically -- when you feel well, you start to forget to keep up with fluids and salt--by doing it every day you can hold off sudden recurrences of symptoms. In my case, I think she was correct.

That said, I have not experienced fullness and pain with the vertigo.

If it is not resolving with increased fluids and salt--can you see a POTS specialist? If not, it might be good to go ahead and do the tests they suggest to rule out other problems. Also, perhaps you would want to review the alternative treatments you are using with a physician to rule out the possibility that one of these is contributing to or causing this symptom as a side-effect.

Hope you feel a lot better soon. I know it is unpleasant to feel that way and to try to get through a very busy day with such symptoms.

Katherine

[Dizzy Dame]

Hey there,

Have you thought about trying antibiotics to treat the lyme, or are you happy with the results you're getting with the suppliments?

I only ask because if your symptoms are getting worse, and you know you have lyme disease and haven't been treated with antibiotics, perhaps the bacteria are causing more damage?

I hope that's not the case I know vertigo is not uncommon among us POTSies, however I don't have any personal experience with it.

I hope you start to feel better either way!

[Jersey Girl]

Hi Jessica,

I had the spinning senstion for years, really bad and still get it if I overdo it ( i.e. try to do what normal people do in a day). I get nerve pain in my left ear and I am definitely still noise and light sensitive. A busy store is the worst. Good to hear that you are up to chasing two toddlers around! Martha

[nadine]

I have been feeling what you describe for the past year and a half. Still trying to figure it all out. Originally, diagnosed with vestibular disorder, but clearly not just that. It is all much worse when I increase activity- trying to do anything normal. Like walking more than a few feet, being up for length of time, trying to do household activities. I get pressure, fullness, pain in ears also when walking, standing for length of time and things like eating and feeling not digested can make it all much worse. It feels realted to circulation to me. I get real off balance and dizzy, sweaty. Pretty sick and tired of it.

[calypso]

Jessica -- Welcome back! Glad to hear that you are feeling well enough most of the time to work more but sorry to learn that you have this vertigo/dizziness issue going on. I have had spells of this that last for a short time, but the longest was maybe a few weeks in my pre-POTS days. But I was told it was an "inner ear disturbance," although the doctor didn't actually see anything or know for sure. It did go away on its own.

I had some of this same sort of dizziness during this pregnancy, about a month ago. Even lying down didn't help and actually made it worse. The spells often began with a headache, followed by the dizziness, followed by my heart rate going up (maybe from being freaked out, or maybe from some sort of autonomic response). I started increasing my potassium intake in foods and the episodes stopped. That may be a coincidence, too, but it's worth a try. Otherwise, if that is not what caused it in my case, I would attribute it to the changing hormones. Are you still breastfeeding? Wondering if that could be an issue with hormones for you, too.

Take care,

Amy

[DancingLight]

Hi Jess!

I cannot believe Alex is 17 months now! I remember too, last time you posted you had just gotten engaged over xmas time last year...will you be getting married soon too?

As for the Lyme, I am being treated for Lyme myself right now and I wish I had known to do so or had known I had Lyme a zillion years ago!

If you know you have Lyme and have had a positive test...I would really encourage you to treat it with abx. I also worry about your two sons who have been breast fed and their susceptibility to Lyme this way (and in utero).

I can't say what this symptom is--Lyme or POTS--it certainly could be either and it gets so wishy washy if your POTS is caused by Lyme, b/c then it comes down to treating the Lyme anyways, even if it is a more 'typical' POTS symptom...

What is your hesitancy to treat the Lyme? Especially if it might be worsening or might help your POTS? Just curious....

Let us know what you decide and how you are you doing! I really miss you on the board!

Emily

[becky]

hi jessica,

i've had vertigo for 12 weeks now, i was diagnosed with labrynthitis by my doctor. i have ended up in hospital twice with it, tried every medication and nothing is working. i feel very nauseous and when i move my head and eyes i have palpitations! it's great fun! i have an appointment with the ent consultant at the hospital on 4th january so i'll let you know what happens, but apparently they'll want to put me on a chair that tilts so they can see the results - er, no! the ttt was bad enough. They said i might need rehab for my balance as i currently walk into everything!

good luck with it though.

becks x x x

[Sunfish]

hi jess -

just wanted to say "hi" & that it's great to "see" you.

melissa