I had a headache start about 4 weeks ago. It was a stabbing pain on top of head and behind eye. It finally went away a couple days ago.
Now, for the last couple of days whenever I move my eyes left, right, or up and down I get this terrible off balance feeling. It's not dizziness or vertigo. It's really hard to explain. It's almost like the swooshy feeling you get if your suddenly scared and you turn your head quickly to see what is behind you.
I just started Doxy 200 mg a couple of days ago but this started before that. I know that is a low dose but I am starting Rocephin again soon and LLMD wanted to start me off slowly again.
I am going to my neuro at the end of December and having another MRI. LLMD wants to do a double check and make sure no more damage or anything new is stirring up. I am fine with that. My neuro does not treat lyme but he believes in it.
Anyone have any ideas what causes this? Is it a part of Lyme/bartonella?
I am ready to get off this roller coaster ride.
Thanks, kit
Posted by disturbedme (Member # 12346) on :
I know what you mean. I get this too. Though I also feel sort of dizzy and off balance when I have it.
If I move too quickly, I feel dizzy.
I know what you mean about the headache. Though I have mine quite often. It's always the same headache and in the same exact place.
Posted by Vermont_Lymie (Member # 9780) on :
Yes, I have that too. It is slowly getting a little better. Good description, it is hard to describe! I do not know whether it is due to lyme or bartonella; my only possible advise is to keep treating, which you are doing!
I also was advised to see a neuropthamologist for this, but have not had the time and resources to do that yet.
Posted by kitkat32 (Member # 9682) on :
Thank you both for responding. I am sorry you have this too.
Mine got really bad last night when I took my son to swim team practice. I had to leave him there and ask his coach to drive him home.
I went to a neuro optho about a year ago. They didn't find anything. My MRI that I am getting is with and without contrast so if it is an eye problem hopefully they will see it.
Most likely nothing will be found...probably just my walnut size brain...lol. Better safe than sorry though.
Tonight I have my sons chorus concert. I don't really want to go. All that eye movement and flashing Christmas lights...loud singing..the band..it will probably send me straight over the edge.
Thanks again, kit
Posted by webmeg (Member # 13647) on :
I had something like this years ago where if I turned my head the entire room spun. It was some kind of virus. It was awful.
The thing that helped while I got over it was Bonine which is for motion sickness. It is also sold as Dramamine II. And there are generics.
It's over the counter. It doesn't make you tired and works wonders.
It might help with your dizziness until you are better.
~megan
Posted by adamm (Member # 11910) on :
I have Lyme/Bart too, but I only experience this when I'm
going through antidepressant withdrawal.
Posted by kitkat32 (Member # 9682) on :
Adamm,
That is what it feels like. Antidepressant withdrawel. I knew I experienced this feeling before.
It was several years ago when I was weaning off of Paxil.
That is a great description of it for anyone who was had that withrdrawel symptom.
kit
Posted by disturbedme (Member # 12346) on :
quote:Originally posted by kitkat32: It was several years ago when I was weaning off of Paxil. kit
Yes! I've also weaned myself off Paxil and had this. What I have now though isn't the same as what I had felt then though. There's some differences as now I have rushing/wooshing noises in my head, etc.
But yes, when I was weaning off Paxil, my eyes would hurt and feel like they kept moving even if I'd just turn to look at something.
Posted by Keebler (Member # 12673) on :
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you said " All that eye movement and flashing Christmas lights...loud singing..the band.. " sounds like migraine or inner ear stuff - or both.
Could be inflammation. Hydrating with water, electrolytes is good. Not letting your blood sugar drop . . . this all helps me.
=======
One consideration could be problems with the vestibular system. Your eyes, no doubt, are taking over for your inner ear balance, but when they get shaky, something gives.
Smells (such as chlorine) can trigger vertigo, too. And vertigo has lots of type.
It could be just a blimp on the screen with the weather changes of the season. I hope it's no big deal, but some of what's below might be of help.
A quick test of your balance is easy. It's not as fancy as ENT's give, but it might help as a clue to the puzzle.
Stand in front of your bed (so if you fall, it's onto the bed) or lightly holding onto a soft chair. Close your eyes. Do you sway?
If so, that means your eyes are working overtime for the inner ear (vestibular) balance system. Frequent rests help as this system needs rest to help heal. This is a remarkable system and control far more than we realize - even our abilty to think clearly.
In the meantime, ginger tea might help. you can learn lots of self-care and safety tips from the
There is also a book / DVD called YOGA FOR THE EYES There are some very cool eye exercises that will help, too, beyond this book. An ENT can guide you in that.
Tai Chi and Qi Gong are very good balance training techiques, too. Sometimes a P.T. with vestibular training can help, but if you go, I'd sure go onto to one who really understands lyme. Lyme patients with vestibular disorders is a whole additional field of study, in my opinion.
=======================
OHHH - about sensitivity to sound - additional information from this place might help. Although this can result from damage from loud noise, drugs or chemicals, Hyperacusis is also very common in lyme. Many find that treatment helps resolve the problem.
Those on abx tx have ears that need extra protection, too. Earplugs, construction quality muffs, etc.
THE HYPERACUSIS NETWORK - consists of individuals who have a collapsed tolerance to sound.
www.hyperacusis.net (brace yourself for a moving bar across the top of this site, though. If I put both my feet flat on the floor I don't fall over. LOTS of good info here, though.)
and - magesium/calcium/ zinc help.
=====================================
[ 29. November 2007, 04:34 PM: Message edited by: Keebler ]
Posted by hshbmom (Member # 9478) on :
Hi Kit,
My daughter is having a similar problem. You may want to read my new post.
Keebler is on the right track and has some good recommendations.
Posted by kitkat32 (Member # 9682) on :
Thankyou all for your advice.
I tryed standing with my eyes closed. I was good for about 3-4 seconds and then I swayed to the left and backwards at the same time. It wasn't enough to fall down...I was able to open my eyes and regain balance. My husband watched though and he knew before I did that I was swaying.
YIKES..another thing to deal with.
So, I am a little confused. Does vestibular mean comming from the ear or the eyes?
My brain is not working properly tonight. I feel all mushy..I am sure everyone knows what I mean by that.
Thanks again, kit
Posted by Geneal (Member # 10375) on :
Vestibular is ears.
I have had this problem so bad that I almost fell when closing
My eyes in a shower to wash my hair.
Balance can also be some involvement with the occipital lobe of the brain.
That is where balance cortex is located.
Maybe some inflammation of the brain?
Usually when I get bouts of this (still get it at times),
I have a bad headache and a stiff, hurting neck.
Hope you feel better soon.
Hugs,
Geneal
Posted by Keebler (Member # 12673) on :
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Yes, vestibular is the ears - the inner ear, the middle ear . . . the entire balance system with other parts.
Our vision plays large role in our vestibular system when the ears can't do all they should. Our eyes take over. So, as a test, if you close your eyes and you're swimming or swaying, your ears' guidance system is off kilter, temporarily, we hope.
As others have stated, although vestibular disorders may be diagnosed - and yes the occipital lobe also has a lot to do with it - well - with those of us who have lyme / TBD - for what I've read for years and in professional articles is that if the treatment for the TBD(s) is successful, the vestibular stuff may get lots better or even all better.
I forgot until someone today on this or a similar thead posted that babesia can really pressure the vestibular system with odd sorts of vertigo.
As treatment for the TBD takes a while methods to take care of ourselves and retrain as we can can be found at the various sites such as VEDA.
And - sometimes it's not just the TBD. We are so used to having so many swirling symptoms that are related to TBD, but we have to be careful not to always think that's it.
So that's where the LLMDs come in (if you are so lucky to have one) . . . and if you need to be evaluated for vestibular or other neuro stuff, of course, if you can, find the specialists who also knows something about lyme but will evaluate adequately in case it's something else.
And, when it's lyme / TBD related the vestibular, the brain, the eyes, the muscles . . . well, it all can be affected so we have to emply a broad-based treatment. Toxin buildup, too, can gum up the ears . . .as can food reactions.
Some safety tips that may be on the VEDA site: at night, keep a nightlight on so you can orientate yourself.
When walking in a crowd, look at the floor where you are walking if people moving make you sway. Better to keep you chin up and look at where you are going, but in a crowd, that may be impossible as folks will criss-cross.
always wait a minute after you get up, feel the bottom of your feet on the floor and get your grounding. A cane can help, not so much to lean on but just as another sort of antenae. I touch walls, counters, tops of chairs, etc. a lot as I walk to give my brain one more way to know where I am in space.
sorry this is a mish-mash. I hope you find fast and sure relief.
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Posted by kitkat32 (Member # 9682) on :
Thank you both for the info.
I always have everything checked out..I try not to blame everything on my Lyme/bartonella. All my tests usually show nothing, but, rather safe than sorry.
I get my MRI next week and then have a appt. with my neuro. He does not treat my lyme..I do have an LLMD..but he does believe in it. He actually was the doc to dx me with MS many years ago. As my symptoms didn't improve but I had no bands showing for MS...he was the one who said Lyme would explain all of my problems. He did my initial order for Igenex testing.
I know that many would have fired this neuro because of the wrong dx but I believe in my heart he really thought that I had it. Plus, since he believes in lyme I don't want to have to search for another one and convince that one to believe in it too.
Thanks again for the info. I am feeling a little scared because of all this. Especially since I keep getting those stabbing headaches. I will just have to be patient and wait for appt. LLMD is aware of all of this. He also wanted me to see my neuro for a check up.
Best wishes, kit
Posted by Tracy9 (Member # 7521) on :
I was going to say just what Adamm did; years ago when I abruptly stopped Paxil this is what happened. I didn't know how to describe it to anyone, except to say it felt like a "chi ching" noise in my head when I turned it from left to right.
Posted by Keebler (Member # 12673) on :
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Good luck, Kit.
Actually that doctor sounds like a good guy. We are all learning. Those who grow along the way, well, that's great. New information comes along all the time. It's what someone does with it - such as this doctor - that determines their character.
When you get your MRI, be certain to take the best ear plugs you have. The harder, white or grey type are better than the softer orange or tan type that swish more like circus peanuts.
If the MRI has a stethescope with ear plugs that they used to talk to you with, be certain that they make a perfect seal.
if, at anytime the seal comes undone, tell them to stop so you can reseal. It's important to have the seal for the hearing protection. And if you are sensitive to sound, be sure to tell them to talk very softly.
If you need to rest during "takes" tell them.
I hope they will also look at the neck for the MRI.
---
Cranial-sacral therapy really helps me, BTW. I wonder if you might be able to get that with a DO or gentle (gentle) DC ?
Best of luck to you. Rest well.
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[ 30. November 2007, 12:51 AM: Message edited by: Keebler ]
Posted by kitkat32 (Member # 9682) on :
Thanks Keebler,
I can't stand the noise of an MRI. I always get the ear plugs.
I have become pretty sensitive to being enclosed too. This time I am taking xanax before I go in.
I don't know if this one includes my neck. My last 2 did. I know I am getting it with and without contrast this time too.
Thanks again, kit
Posted by dguy (Member # 8979) on :
I've been disabled with this sort of vestibular imbalance thing for about a decade, during which time I've learned many things that don't help.
But after a year on the abx protocol I'm doing, the symptom severity is finally declining. Progress is very slow, but it is being made. If you have this symptom, don't give up, don't ever give up.
Posted by TheCrimeOfLyme (Member # 4019) on :
Kit,
I had this and it was not a joy to have, so I can sympathize. I used to call it looking through the fish bowl syndrome, as thats the only way I could describe it, or
as if when I looked at something- it took my brain a while to catch up with my eyes.
I had ENT testing done and it did show a problem on my right side. My lyme is mainly on my right side.
This problem S L O W L Y resolved for me, mainly on bart and yeast treatment.
I hope it gets better for you as well. Don't give up. Ever.
Posted by Ellie K (Member # 12056) on :
YES! I've had this for months, thought I was the only one. Thanks for posting! Now I don't feel so alone. I've also had the pain behind one eye socket, like you described.
I've had this sx during both Lyme and Babs herxes, so I'm not sure where it really comes from.
You're right-- it's really hard to put words to. I've tried describing it to my family but it's really hard. All I can say is that it's very unpleasant!
When it's at it's worst, I try to keep my eyes shut as much as possible. Posted by kitkat32 (Member # 9682) on :
Your right..it is a terrible symptom.
It felt better yesterday but is back in full swing today. It is driving me crazy. Like I need any more help to go crazy.
kit
Posted by klutzo (Member # 5701) on :
I had those symptoms so bad at the beginning of my illness that I would fall over and hurt myself. It was one reason why I was misdiagnosed with MS at first.
I had electronasography done by an ENT doctor, a horrible test I would not recommend unless you enjoy torture. The results showed "a great left beating nystagmus".
A study showed 70% of people dx'd with Fibromyalgia have nystagmus to some degree. Fibro was my second dx, after MS.
I needed help to walk across a room for quite awhile, so I'd walk around the edges, hanging onto the walls.
For tx I was given Prednisone.... No comment needed on that one!
It slowly faded on it's own as the symptoms moved elsewhere....you know how Lyme sx migrate. It was bad for about the first year and a half, but now I only have it for a few seconds, and only very rarely, when my neck is too stiff.
Wish I could be of more help. I know from experience that when this is happening, seconds feel like hours, so you have my empathy.
Klutzo
Klutzo
Posted by Dawn in VA (Member # 9693) on :
You might want to get checked out by a neurotologist (specialist in "balance disorders"- vestibular problems).
-Dawn
Posted by ICEiam (Member # 7519) on :
My daughter got this headache that has dizziness along with it, it started last Jan 10 and it hasn't gone away since. It doesn't let up and it has never gone away since the day it started.
She has had test after test on her head.........they find nothing. She has taken every narcotic around that is usually used for pain. The long term stuff such as patches or the extened release pills make her sick and her liver is messed up so she has to be careful about what she puts through her liver.
Any Ideas out there for the headache and the dizziness??
Hugs,
Posted by adamm (Member # 11910) on :
Hey I've actually been suffering this now for the past few days
despite the fact that I'm NOT going through anti-dep withdrawal.
Could it be part of a herx (I've also been gettig a ton of new
petechiae/purpura and suffering an upset stomach)?
Posted by islandgirl (Member # 5914) on :
I've had this problem for the past four years. Have 40 lesions in my brain, mostly cerebellum but also in the white matter which have not gone away and I believe will always be with me. It is a horrible symptom but here are ways I cope.
1. I bought two good walking sticks and use them always. Use two when I am walking through the parks and use one when I am walking with the dog on lead or when I need a hand free in stores. In this way, when I veer off or become very swirrly, I can always catch my balance.
PS These are MUCH better then canes. You can maintain an upright posture. Canes and walkers tend to change your alignment to a stooped position. AND, you look NORMAL as many people are using them now. Old, young, handicapped, knee problems, hikers, etc. You are now part of the moving generation!!
PSS they also train you to move your arms and legs in the correct cadance. The first two years, I would not/could not swing my arms in opposition to the legs as normal. Kept my arms in my pockets. The poles forced my to use arms and legs together, eventually regaining a natural rhythm and coordination.
2. I cannot move my eyes without losing balance. (I did 3 months of neuro/physical therapy training and this was the one thing I could NOT master...it even got worse with time.) So, I always move my head and eyes together. ALWAYS. And I will change my whole body facing to the new direction if necessary. If not, I am down for the count.
3. If I move my head to the right to see something, I can take two steps and then will veer/lurch immediately to the left. Therefore, I always have my walking sticks to catch my balance. I unconsciously anticipate this lurch and can counteract it.
It all is so natural now, it has become quite manageable. (And when I fall or lurch violently into someone, I can laugh at the absurdity of it all.) I can walk very quickly now, up and down hills, etc. I used to be a dancer so losing my ability to move with ease was a real shock.
4. I use sunglasses everywhere. I have, like many of us, a super-sensativity to light. So this helps this problem. As well, it forces me to look straight foward....sort of filters out side movement that distracts me and can throw me for a loop. It makes shopping possible now....the florescent lights, the crowds, etc are all unbearable.This is a common theme of us all.
Hey...whatever works. I get frustrated as we all do, but found that these and other coping devices, plus regaining my old sense of humour and bemusement with the ridiculous nonsense we all must deal with now, has made me grateful for what I do have.
I hope some of this helps....
Posted by adamm (Member # 11910) on :
HOLY CRAP! Is this a red flag for brain lesions? Posted by hshbmom (Member # 9478) on :
klutzo,
My daughter goes next week for an ENG. Is this the best test for vestibular problems?
She had nausea for a week, then had a cluster of neurological symptoms and was off balance for a couple of weeks. She felt like she was drunk, but not dizzy. She stumbled around the house.
The ENT and neurologist found nothing wrong...the neuro didn't notice she had no gag reflex and that her eyebrows were at different levels.
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![[Smile]](smile.gif)
~megan
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