Wondering if others have this? I am dizzy most all the time but it's definitely worse when turing my head any direction.
Posted by Razzle (Member # 30398) on :
Yes. I have 24/7 vertigo, but it is very much aggravated by turning my head one direction or another...especially looking to the left (in my case).
Posted by birdie67 (Member # 35994) on :
Thanks Razzle, sorry you have it too. Any idea what may be causing it?
Posted by Razzle (Member # 30398) on :
The theory is the doxy stirred up something and I'm not on anything to get at what got stirred up...I suspect babesia (though I test negative), but could be wrong...
Tried many things (meds, homeopathy, physical therapy, etc.) that usually help vertigo, but those things make it worse.
Posted by hiker53 (Member # 6046) on :
birdie67--do you get vertigo when you look up or down or roll over in bed.
I sometimes get BPPV--benign proximal positional vertigo. Little crystals in the ear get out of place and make your dizzy.
A good audiologist or trained physical therapist can check your for this and correct it.
Vertigo was my first symptom after an earache.
Hiker53
Posted by birdie67 (Member # 35994) on :
hiker, no I don't seem to get it when I look up or down or roll over in bed. I mostly get it when I look side to side. When I turn my head to the side, I get super dizzy right away. So weird.
My LLND who has treated many patients has never seen someone so dizzy as me. I've tried SO many things to get it to go away but have had zero luck.
Razzle, sounds a lot like me. I've tried so many things too with no luck. Mine could be partly babesia but I've treated for that with Mepron and Zith and it didn't help it at all. UGH!!
Posted by nefferdun (Member # 20157) on :
I had vertigo and ataxia when I had babesia. I had to sleep on one side or I would get so dizzy it made me sick. When it was really bad I walked like a drunk.
I don't have it any more. I got so used to protecting the dizzy side that I have to force myself to turn over.
Posted by birdie67 (Member # 35994) on :
nefferdun, so glad it's gone for you. What combo of drugs knocked out your babesia? And for how long did you treat it?
Posted by opus2828 (Member # 15407) on :
I have the vertigo with head motion intolerance. So far nothing has helped much. I think it is related to dysautonomia as I also have POTS. I think it may be from bartonella. I just started Beyond Balance and willbe starting rife this week.
Posted by birdie67 (Member # 35994) on :
Opus, sorry you have it too. It's the worst!! Let me know if the beyond balance or rife help you at all with it.
Posted by SDAR (Member # 51751) on :
quote:Originally posted by nefferdun: I had vertigo and ataxia when I had babesia. I had to sleep on one side or I would get so dizzy it made me sick. When it was really bad I walked like a drunk.
I don't have it any more. I got so used to protecting the dizzy side that I have to force myself to turn over.
I am looked my for help from anyone who has or had Ataxia and I sent your post can you please tell me if your sleep and walking for the symptoms?
Posted by SDAR (Member # 51751) on :
quote:Originally posted by nefferdun: I had vertigo and ataxia when I had babesia. I had to sleep on one side or I would get so dizzy it made me sick. When it was really bad I walked like a drunk.
I don't have it any more. I got so used to protecting the dizzy side that I have to force myself to turn over.
I am looked my for help from anyone who has or had Ataxia and I sent your post can you please tell me if your sleep and walking for the symptoms?
Posted by Keebler (Member # 12673) on :
- SDAR
I had had it worse yet still have ataxia - situationally, so to speak.
For me, it's likely various neuro functions getting "stuck" but directly also is related to various vestibular - inner / middle ear issues, too.
Sounds & Movement (even in nature) are my main triggers that cause my muscles to lock up. Fatigue, too.
First, though I know the positional vertigo question first posted in this thread was years ago: "The Epley Maneuver" may work for anyone dealing with that now. It depends, though. Google just that for faster finding or see it somewhere in here:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
-- Back to ATAXIA, there can be many influences, triggers and maybe even causes.
It's nothing new to those dealing with lyme, many not many but certainly more than just "some" seem to have this.
Most for whom this develops while they have lyme find it is lyme (or other tick-borne infection) related. And treatment for such usually helps this diminish and even subside, though it may take a while for treatment to work.
Certainly, if at all possible one's ILADS educated (and beyond with experience and study, etc.) LLMD or LL ND should be consulted. Also ask if they think some imaging of brain or spine should be done.
For vestibular connected issues, by going over some of the topics in the thread above, you may find some good aspects to pursue.
Vestubular therapy might help - at least to a degree to help with your safety of where to look, your posture and how to manage when "stuck" --- if the inner / middle ear is involved.
I cannot tell you have valuable these kind of things are to my safety ever day. Knowing where to look, and being mindful of my feet and my position in space has saved me from many tumbles.
And if you use a cane, I make sure it's the length for your comfort. Mine is very short - It comes up to fit in the palm of my hand when I'm standing straight. I just sort of let it ease up a bit higher so as to not even hit the ground --- until I feel a sense that I'm getting "stuck"
Some PTs have been alarmed that it's too short but it works perfectly for how I need it. I hesitated for a long time with that and took a lot of tumbles. Making peace with it helped.
I only use it when I'm out as that's the only time ataxia hits, really (other than in my voice on the phone sometimes).
For me, the movement going on about me when out -- or uneven surfaces, etc. Those are my triggers. You may or may not have triggers but if you do, they can really help figure out not just some of the influences but maybe the cause(s), too.
QiGong has been very helpful for me. Tai Chi involved too much turning of the head and side to side traveling for me, though.
I was vegetarian when this all started, at my sickest. Since I've gone back to eating meat (grass-fed & finished if possible) - and a good portion of it most days. I am stronger, too. 14 months now on a ketogenic diet and that has helped even more.
The increase in good animal fats, Vitamin D & cod liver oil seems to also really help my neuro function / vestibular tolerance and muscle strength.
I've never been able to access a proper treatment program for lyme / babesia, etc. yet have found certain herbal protocols that helped to some degree.
I hope you can access an excellent LL doctor. Really look at babesia and bartonella, in addition to lyme, though as those two are often on board with ataxia.
Aside from the neuro influences, the sheer exhaustion of dealing with lyme can make ataxia events occur more often.
And the weakness of the body with babesia, the attack of the red blood cells - I suspect that when I was at my worst, it was due a lot to that.
My body could not get stronger until infection was worked on (however that is. I found the Zhang protocol the best for me but I had to stop it short).
If you happen to be taking any Rx, also look to that for how it might be influencing or even causing ataxia for you -- or making it worse.
Check out what your red blood cells look like and your iron nutrients, etc.
and SALT -- In my experience, I tend to think that the low blood pressure issues often faced by those with lyme can highly influence ataxia events.
POTS, NMH, etc. adrenal issues, tired now so can't elaborate but start with being sure you get enough salt.
I require at least 5 grams a day. I start with one gram in water and get that down fairly quickly. Most LLMDs know all about POTS, NMH and the drops that can happen that seem to kidnap muscles along with all that.
I have a tiny gram spoon but you can look up the tsp. = it's about 1/4 tsp.
With low sodium / electrolytes / minerals, the neuro signals can go kaput is various ways. Magnesium might need to go up to 1,000 - 2,000 mg a day always in divided doses.
And the gov't recommendation for salt is wrong, just wrong. But do consult your LLMD about it for your own body and considering any Rx.
Redmond sea salt is what I recommend. - and keeping to zero processed foods, or course. They can really mess up neuro function in many ways.
I also strongly suggest no colas but especially no diet colas and no aspartame (I saw direct ataxia from that long ago but I was clueless to aspartame damage).
I know this is getting long but there are so many key considerations.
Plant LECTINS and OXALATES might also have an influence.
For instance, lectins have been found to affect movement disorders of Parkinson's. I suspect also other conditions might be affected by lectins.
Search You Tube: "Dr. Paul Mason" Lectins
for his talk from March of this year at Carnivore Conference. Now, no need to think I'm saying one has to eat only meat but his talk is very good and it just happens to be at this conference.
About 13 minutes into this is where you see that part. The lectins travel to the brain from the gut / from the vagus nerve. the diagram he uses is helpful.
I also went to all his sources and studied those - it's remarkable. I have all that in a file but will just let it stand as this: plant lectins might have an influence in various movement disorders. Worth considering.
I also think all artificial or processed sweeteners should be avoided, even stevia. I have studied this, too, so it's not just my hunch and my own experience. It gets easier after awhile though the hope of better nerve function is a good reason to stay clear of those.
Good luck & take care -
[ 07-29-2019, 01:12 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Marnie suggested this recently to someone and I recall how helpful it was to my ability to walk at that time and feel clearer with my brain regarding balance.:
Pycnogenol.
You might also find Berberine to be a good helper while you sort out all of this.
Imaging or other assessments would be next, according to what your LLMD might think.
If you go for any other neuro assessment, it's best that your LLMD -- or if you don't have one - then call all the LLMDs near you and ask if they can recommend a good neurologist in whom they have confidence. This matters.
This might be something other than lyme / TBD however, if a doctor / specialist does not understand the complexities of lyme & all the other tick-borne infections, a proper assessment will be greatly compromised. -
Posted by Robin123 (Member # 9197) on :
I get dizzy if my top vertebrae are out of place. My chiropractor puts my cervical vertebrae back and the dizziness stops. It's an experiment you could try with a really good neck adjuster.
Posted by MissVictoria (Member # 45232) on :
Go to an Ear, Nose, Throat Specialist because vertigo is caused by the inner ear. Also, vestibular rehab could be really helpful for you