Aa
dizziness anyone?
Hey again guys :) just wanna see if anyone else with lymes experiences dizziness and if so then what kind? I get the off balance dizziness feeling like I'm on a boat and the druk kind of feeling. Also does anyone get dizzy with watching movement? I hateee being dizzy wouldn't wish it on anyone but it does comfort me knowing I'm not the only one! Thanks in advance for any responses !
I just saw your message to Melissa072, and if you don't hear from her, it may be that she isn't checking in anymore. She joined here in 2007 (seven years ago!), and I don't recall seeing her post here recently. If you hover your mouse/pointed over her screen name, it should pop up a small box that includes a place to 'Send Message' to her. Click on 'Send Message' and a message box will open up, and when you are done and click 'send' (or whatever word is used), this system will send your message to her. If she is still at the same email address, she may respond.
As to your question in the second paragraph of your post, 21 days of doxy can work against Lyme, but if you have been infected more than a few weeks, the Lyme may well have found a way to hide from the meds and from your immune system, which means the meds may not be effective. This treatment your doc is giving does not, from what I read, work except almost immediately after infection ... not 5+ years after infection. When your meds are done, if you do not feel very very well, then it may indicate that the meds were ineffective. At that point, seeing another doc with more progressive views is what I would do personally. If you need help finding a doc who understands, let us know. Best wishes to you!
As to your question in the second paragraph of your post, 21 days of doxy can work against Lyme, but if you have been infected more than a few weeks, the Lyme may well have found a way to hide from the meds and from your immune system, which means the meds may not be effective. This treatment your doc is giving does not, from what I read, work except almost immediately after infection ... not 5+ years after infection. When your meds are done, if you do not feel very very well, then it may indicate that the meds were ineffective. At that point, seeing another doc with more progressive views is what I would do personally. If you need help finding a doc who understands, let us know. Best wishes to you!
I know this thread is old, but in case your still around on the board I wanted to ask how are you doing now? How long of a course of Doxy were you giving?
I have the same symptom as you, bobbing in head, off balance, drunk feeling like I'm standing on a dock. I;ve also been having these symptoms for about 5 1/2 years now and I never know why until I got my positive Lyme test. I got my Lyme test back almost three weeks ago and my Doctor started me to on 100 mg x2 per day of Doxy for 21 days. I'm praying this is enough to cure me despite what many people on the forms say. I'm trying to be hopeful. I only have 4 days left until I'm done the Doxy.
I have the same symptom as you, bobbing in head, off balance, drunk feeling like I'm standing on a dock. I;ve also been having these symptoms for about 5 1/2 years now and I never know why until I got my positive Lyme test. I got my Lyme test back almost three weeks ago and my Doctor started me to on 100 mg x2 per day of Doxy for 21 days. I'm praying this is enough to cure me despite what many people on the forms say. I'm trying to be hopeful. I only have 4 days left until I'm done the Doxy.
"He wouldn't test me as I had never left the country" ---??? Egad.
Good for you for persevering -- your courage has paid off for you and for your daughter.
Thank you for sharing your experiences --
Good for you for persevering -- your courage has paid off for you and for your daughter.
Thank you for sharing your experiences --
Yes was 5 years, even longer.
All I could manage to do of a day time was sit and just stare into space
Walking to the clothesline was on a very good day
I put on a lot of weight, and practically become a recluse.
I avoided everyone, even my family as my head was so 'stupid' I just didn't want to be around anyone.
Once diagnosed with lyme, I started the meds, and was so unsure they were going to work, I would wake up everyday, and think nope, no change, I even rung my Dr in a state of panic as they just weren't doing anything.
Then exactly 3 weeks into my meds I woke up one morning and the horrible 'bobbing brain' was just simply gone....
I must admit though I was paranoind that it wouldn't last and that I would wake up to it again, and every morning I would awake and think, still gone, was a while before I could relax and think maybe its gone for good.
But its been over a year now, and its still hasn't rared its ugly head, and hopefully it never will again, its the worst sympton I have ever experienced.
My eye dizziness has also subsided and on good days I can turn my head quickly to very minimal dizziness.
And with my daughter just getting back her igenex and CDC positive results for lyme, (she has exact symptons as me ) I have no doubt that lyme exists and we both have it. ( I did have doubts even with my positive results)
Also the fact they say its not here in Australia, I must admit I was sitting on the fence too with the belief that it was here.
One thing I am doing though is going back to my neurologist who told me I must have ms then (even with all clear mri's and LP, as he couldn't find what was wrong with me, so he threw me the ms diagnosis)
I'm going back with my daughters and my results
I'm going to tell him after having horrible symptons for over 5 years straight, they are now disappearing
I'm going to tell him he was wrong with my ms diagnosis
And that he should have got me tested 5 years ago when I asked him twice if maybe I could have lyme.
He wouldn't test me as I had never left the country
I knew I should have lied and told him I had of
If probably won't make a difference to what he believes in, but maybe if someone else comes into his office one day and asks about lyme, he might just have the balls to test them and that one person may not have to suffer like I did....
All I could manage to do of a day time was sit and just stare into space
Walking to the clothesline was on a very good day
I put on a lot of weight, and practically become a recluse.
I avoided everyone, even my family as my head was so 'stupid' I just didn't want to be around anyone.
Once diagnosed with lyme, I started the meds, and was so unsure they were going to work, I would wake up everyday, and think nope, no change, I even rung my Dr in a state of panic as they just weren't doing anything.
Then exactly 3 weeks into my meds I woke up one morning and the horrible 'bobbing brain' was just simply gone....
I must admit though I was paranoind that it wouldn't last and that I would wake up to it again, and every morning I would awake and think, still gone, was a while before I could relax and think maybe its gone for good.
But its been over a year now, and its still hasn't rared its ugly head, and hopefully it never will again, its the worst sympton I have ever experienced.
My eye dizziness has also subsided and on good days I can turn my head quickly to very minimal dizziness.
And with my daughter just getting back her igenex and CDC positive results for lyme, (she has exact symptons as me ) I have no doubt that lyme exists and we both have it. ( I did have doubts even with my positive results)
Also the fact they say its not here in Australia, I must admit I was sitting on the fence too with the belief that it was here.
One thing I am doing though is going back to my neurologist who told me I must have ms then (even with all clear mri's and LP, as he couldn't find what was wrong with me, so he threw me the ms diagnosis)
I'm going back with my daughters and my results
I'm going to tell him after having horrible symptons for over 5 years straight, they are now disappearing
I'm going to tell him he was wrong with my ms diagnosis
And that he should have got me tested 5 years ago when I asked him twice if maybe I could have lyme.
He wouldn't test me as I had never left the country
I knew I should have lied and told him I had of
If probably won't make a difference to what he believes in, but maybe if someone else comes into his office one day and asks about lyme, he might just have the balls to test them and that one person may not have to suffer like I did....
Thanks for all the responses guys .. Glad to know I'm not alone and hopefully some day soon we all get better !
Hi
I had that dizziness for 24/7 for 5 years.
3 weeks into my lyme meds it stopped, now I only get it with sudden head movement, and I hope it continues to go away.
I felt like I was drunk, and walking on a moving boat, the inside of my head had a 24/7 'bobbing brain' feeling, it just never stopped.
Thank goodness it has now...
I had that dizziness for 24/7 for 5 years.
3 weeks into my lyme meds it stopped, now I only get it with sudden head movement, and I hope it continues to go away.
I felt like I was drunk, and walking on a moving boat, the inside of my head had a 24/7 'bobbing brain' feeling, it just never stopped.
Thank goodness it has now...
2 Comments
I have same symptoms and I started treatment a week ago! Glad to hear yours went away. Are they still gone? What medication were you on?
I have same symptoms and I started treatment a week ago! Glad to hear yours went away. Are they still gone? What medication were you on?
I take metoprolol succinate. My tachycardia kicked in just as I could feel myself really going downhill fast. I was developing new symptoms quickly , and the high BP and heart rate were part of that. Then, I started on provigil, which made the fatigue better, but the high heart rate worse. My PCP gave me the scrip for the beta blocker to get both the heart rate and BP under control. Thank goodness for that.
My worst moment was shortly before I saw the PCP when I woke up in the night and my heart was pounding so hard, I swear it shook the bed. (I was laying on my stomach.) I grabbed my pulse/oximeter and my heart rate was 155. What a horrible feeling. I lay there wondering if I needed to call an ambulance. My husband was out of town and our 5 yr old was asleep. If I had been home alone, I probably would have dialed 911. I was torn between traumatizing my child with a midnight trip to the ER and the possibility of traumatizing my child by dying of heart failure. :(
Thankfully, it started to slow down. I was just days away from my LLMD appointment and I just hoped I would live to get there and start treatment before I got any worse. Obviously, I did. :)
And the docs in the hospital I had just come out of the week before were sure I had some mystery neurological condition, just not Lyme Disease.
My worst moment was shortly before I saw the PCP when I woke up in the night and my heart was pounding so hard, I swear it shook the bed. (I was laying on my stomach.) I grabbed my pulse/oximeter and my heart rate was 155. What a horrible feeling. I lay there wondering if I needed to call an ambulance. My husband was out of town and our 5 yr old was asleep. If I had been home alone, I probably would have dialed 911. I was torn between traumatizing my child with a midnight trip to the ER and the possibility of traumatizing my child by dying of heart failure. :(
Thankfully, it started to slow down. I was just days away from my LLMD appointment and I just hoped I would live to get there and start treatment before I got any worse. Obviously, I did. :)
And the docs in the hospital I had just come out of the week before were sure I had some mystery neurological condition, just not Lyme Disease.
I do get various kind of dizziness. It can be hard to explain to doctor the different kind of dizziness, including feel like as if I am on boat, and from watching movement.
-Motion sickness
-Dizziness from stand up too quickly/neurally mediated hypotension
-Vertigo-like
-True vertigo
-Too much movement (I called it sensory overload) will make me feel dizzy, even from watch tv/movie or heavy visual activity, or being in crowded environment.
I no longer take atenolol/florinef now for neurraly mediated hypotension and lightheadness-it has resolved after ten plus years last fall along with some of other chronic symptoms.
I take meclizine to deal with motion sickness, but it does not help with dizziness from sensory overload--quiet, even dark, environment helped.
Rocephin IV helped a lot of those symptoms. Doxy does not help. We'll see what other ABX will help for me.
-Motion sickness
-Dizziness from stand up too quickly/neurally mediated hypotension
-Vertigo-like
-True vertigo
-Too much movement (I called it sensory overload) will make me feel dizzy, even from watch tv/movie or heavy visual activity, or being in crowded environment.
I no longer take atenolol/florinef now for neurraly mediated hypotension and lightheadness-it has resolved after ten plus years last fall along with some of other chronic symptoms.
I take meclizine to deal with motion sickness, but it does not help with dizziness from sensory overload--quiet, even dark, environment helped.
Rocephin IV helped a lot of those symptoms. Doxy does not help. We'll see what other ABX will help for me.
Rico,
I am taking atenolol for the same thing. Did you have it before you got sick,
The tachycardia?
I am taking atenolol for the same thing. Did you have it before you got sick,
The tachycardia?
Me, too. Sometimes the dizziness was just a mild off balance feeling while walking, other times I had more like vertigo in which I could be sitting still but the room was spinning. And I also noticed more motion sickness/sensitivity, like you say seeing this move would make me feel dizzy.
I still sometimes get a little dizzy if my symptoms are flaring but this issue has mostly resolved for me, knock on wood that it stays gone!
I still sometimes get a little dizzy if my symptoms are flaring but this issue has mostly resolved for me, knock on wood that it stays gone!
Oh, yeah. I have had a lot of dizzyness. It would usually come along with my "unavoidable need to sit or lie down," as Burrascano described it. The dizzyness that comes with nausea is different for me than the "drunk" dizzyness I usually had with Lyme, although I have had both. The Lyme dizziness has been profound for me at times, where I have to lie down and close my eyes for an extended period of time. More recently, I only had brief dizzyness when I stood up. I realized my BP was a bit too low and cut back on my beta blocker., which really helped. (The beta blocker is keeping my tachycardia down.)
I think the Burrascano checklist referred to it as dizzyness without true vertigo. Doctors unfamiliar with this don't know the difference, and I have heard multiple stories of a doctor looking at a Lyme patient strangely when the Lyme patient tries to explain it.
I hate it too!
I think the Burrascano checklist referred to it as dizzyness without true vertigo. Doctors unfamiliar with this don't know the difference, and I have heard multiple stories of a doctor looking at a Lyme patient strangely when the Lyme patient tries to explain it.
I hate it too!
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