Dizzy Dame

Hi Gals,

Has anyone here had hallucinations before? Over the past few days, I've started seeing shadows move, and other strange things that I can't quite explain. I've been having a hard time with my BP and HR, so I'm wondering if any of you have had similar experiences when your BP is irratic, or you're having arrythmias.

I hope it's not a ghost

-Lauren

Getting tenure nowadays is no easy feat! Congratulations

Welcome! I'm sorry you have to be here, but so glad you found us. I hope you find many friends and answers while you're with us.

Amy, I'm so glad to hear things are starting to go your way Hopefully this is only the first of many good stretches for you and your family!

I've never referred to my illness as POTS except for on this site. I always refer to it as PTS (Postural Tachycardia Syndrome), since that's a more appropriate acronym anyway.

Since the lyme diagnosis, however, I now tell people that I have lyme disease.

Welcome home Melissa

Ernie, I'm so sorry you had to be reminded of all you've lost. I know it's so difficult when that happens. But today is a new day, and from what I've heard on the forum from your posts, you are improving, slowly but surely. Hopefully in the coming years you'll have a new anniversary to celebrate all you've gained back

I went to the link today, but it's been changed. It no longer talks about Wiggles disease.

That's the beauty of Wikipedia, anyone can write anything they want and pretend it's fact, but often people come along and edit it to make it more accurate.

I guess all's well that ends well

I get this ALL the time. Along with other strange symptoms when I wake up. I've never had anything bad happen because of it, though, so I assume it's harmless. Hopefully it isn't too unpleasant for you!

Thanks Rachel. I've been on Mestinon for about 6 months now, and it's been a wonder drug for me so far. All of these symptoms began the day I started antibiotics, so I'm 99% sure they're related.

I'm sorry mestinon didn't help you. I know it's helped so many people. I hope you're on something now that manages your symptoms

Thanks guys for all the support

Unfortunately my symptoms are getting steadily worse, not better. I'm going to call my doctor tomorrow because I'm starting to worry something's wrong. I haven't felt this sick since last winter...and that was before I was on any medications for my POTS. Basically, I feel like I'm not on any meds of any kind, even though I'm on both midodrine and mestinon.

Grrrrrrr. I'm also on the lowest possible dose of antibiotics, so I don't know what we're going to do...

But anyways, thanks for the support and encouragement. It means so much to me!

Hugs,

Lauren

Ouch Maxine!

I hope you can get some relief for that nail! I think soaking it in salt water may help you feel beter, but honestly, you should go see your doctor before doing anything.

I hope you feel better!

-Lauren

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!

Maybe you have an ear infection? That's the only thing I can think of...

I do hope you feel better though! Ringing in the ears is sooo annoying I know

Hugs,

Lauren

I get this too in my hands and forearms. Mine has to do with my peripheral neuropathy though, and less to do with alleriges. Unfortunately I don't know any way to ease it, I just try to put up with it when it happens, and it usually passes within a few hours to a few days.

Hope you feel better!

Lauren

Thanks guys. The urination problems seem to be calming down, so now I'm just dealing with everything else. However, all my doctors think this is a good sign. Despite feeling so sick, these symptoms mean that the antibiotics are working and are helping flush out all the nasty bacteria hiding in my tissue. Hopefully in the next few days things will calm down...and who knows, maybe I'll even start to see some minor improvements in my overall symptoms.

Thanks Emily for the update. I know it must be difficult for you to post right now with your horrible period

Melissa,

I'm so sorry to hear you're in the hospital again, and on your birthday no less I really hope they can kill that nasty poultry bacteria and get your horrible headache under control so you can go home. In the meantime, know that we all love you and are rooting and praying for you here on DINET.

Hugs,

Lauren

Hi All,

I just wanted to update everyone on what was happening with my antibiotic treatment. I started taking zithromyacin on monday to treat a likely lyme infection that my doctors are hoping is the cause of my POTS.

Within a few hours of taking my first dose, a barage of symptoms knocked me flat on my butt. I had stomach cramps, diarrhea, nausea, a mild headache, my POTS symptoms got worse, and all I wanted to do was curl up under a bunch of blankets. It really wasn't soooo awful, it was just like a surge in all my normal symptoms.

However, on Tuesday, I woke up with sores all over my face, and my left lip and cheek were very swollen. I went and saw my doctor and she didn't know what to make of them, but assumed that it was part of the herxheimer reaction I've been experiencing.

Now, I'm having trouble urinating. I usually never have any problems going to the bathroom, but over the past 24 hours, it takes 2-3 seconds to get things started when I go to the bathroom. I also have to concentrate on it or else I'll stop. Does anyone else have this problem? Does this sound like neurogenic bladder?

If it keeps up I'm going to call my doc again, but I've been calling her every day, so I'd like to give her at least a teensy break.

Anyway, because my reaction to the antibiotics was so strong, my doctors are now convinced I have lyme disease, or at least I have something that's responding to the antibiotics. Hopefully over the next few weeks things will calm down, and maybe I'll even start to see some improvement.

None taken. I was pretty sure you mean anything by it, but I wanted to make sure.

My first symptom was tachycardia as well. But after awhile even the fast heart rate wasn't compensating for the pooling and I developed dizziness. It's possible that your heartrate is keeping you from feeling dizzy, but if it slowed down, you'd have problems.

One way to test this theory may be to test the pooling in your legs. I heard of a test where they strap a cuff to the ankles on a TTT and test the pressure over time. If you have pooling, the BP in your lower legs will go up, from what I understand.

Maybe if you get this test done and it's negative (meaning no pooling), they'll be less apprehensive to up the dose of your beta blockers.

...I've got to say though, while I know you probably didn't mean anything by it, saying that we're "just brain-fogged" feels dismissive. Almost everyone on this forum has tachycardia when standing, and most of us have other symptoms that are very disabling, including, but not limited to, being brain-fogged.

Gosh, Maxine, it sounds unbearable. You should get that lump checked out right away, though. You'll be in my thoughts, and I hope the pain lessens soon!

Hugs,

Lauren

I hope you can go home soon Melissa!

This year's been so rough for you, I really hope that things start calming down a bit

I'm sending big hugs, and good-health, no-fever energy!

(((HUGS)))

Lauren

That sounds awful Nina

I hope you start feeling better soon!

Tanzanite just reminded me of this one really funny episode last year.

I was in a store looking for a sweater. My chair wouldn't fit between the racks of clothes, so I got up and walked about 10 feet to a seciton I wanted to look at. Well, one of the employees saw me and excalimed "Oh my god! I thought you were paralyzed!". At first the comment shocked me, but then I just blurted out, "I was... holy **** I'm cured! I can walk again!". She knew I was kidding though and we had a good laugh about it. Then I explained that I can walk, just not for very long, so that's why I use the chair.

Feel better soon, love!

Let's hope 5th round's a charm

(((HUGS)))

Lauren