I very much appreciate this group. I recently joined. after 5 1/2 years of being diagnosed with "migraine associated dizziness," I seem to actually have lyme.
My symptoms consist of a violent rocking sensation when standing, walking, lying down, sitting- pretty much always , spinning sensation in my head, brain zaps, extreme fatigue, flu like, migraines.
I went from being a healthy, active, clinical psychologist, to being pretty much bedridden. after being diagnosed with "migraine associated dizziness" for so long, I'm still trying to wrap my head around how chronic dizziness can be lyme.
I know lyme can present in varying ways. anyone else dealing with dizziness or come across anyway with such symptoms of chronic dizziness with lyme. I have appts with LLMDs in few weeks.
I thank you so much for the support, and wish everyone better health. just want my life back and an end to this unrelenting, torture:( wishing everyone better health. thank you! Lisa
.................................................
Hi Lisa - it's easier for many here if you break up your posts into a couple lines at a time.
You will feel better with the right treatment, so hang in there to see the doctor.
The only guess I can make, and it is a guess - I get dizziness when my C1 vertebra is subluxated. A chiropractor puts my tight neck back in place.
If you have a tight neck, or even possibly a skull-to-vertebrae misalignment, that's something for a good chiropractor to determine. Otherwise, it's called needing meds to treat Lyme.
[ 12-26-2012, 02:41 PM: Message edited by: Robin123 ]
Posted by droid1226 (Member # 34930) on :
My very first symptoms were severe dizziness. To the point of vomit. I would lay down and feel I was on a rocking boat. I stopped working for months because I couldn't see straight. Spinning head, almost like I was drunk for weeks. Zaps, and jarring motions when my head was completely still.
Valium was an absolute last resort and it saved me. Even at very low doses, it's effective.
My first dx was migraines, then about ten more diagnosis .....then finally tested for lyme and co infections with floored positive results. Treatment has definitely lessened a lot of these symptoms
Posted by Keebler (Member # 12673) on :
- Magnesium is the best helper against migraines. Magnesium defiecency is very common for those with lyme and can cause some profound symtpoms, made worse (of course) by lyme.
I had the exact symptoms as you describe with "violent, rocking" etc.
Sound like your inner & middle ear (the vestibular system) are (is) involved.
That, and the resulting dizziness, Vertigo (which are different but similar and due to similar causes), Balance trouble, hearing changes . . . all very common with lyme and other tick-borne infections.
Valium can be fabulous for some but make it much worse for others. I did worse with it, even a tiny bit.
But, always start ANY RX with just a tiny bit as those with lyme are often much more senstive to Rx that sedates and it can be hard on the liver so be sure to take milk thistle and magnesium, too (just away from the Rx).
I'd ask your GP for a Valium Rx, low dose as it's very commonly prescribed for Meniere's syndrome (which is what you describe but most doctors do not understand that lyme can cause it).
There are other things that can cause this, too, but see your LLMD first and ask if she or he thinks you need further evaluation. Likely not.
In addition to getting to a LLMD and getting infection(s) properly addressed (glad you have an appointment coming up):
AVOID ALL SCENTS around you (scented personal care products, colognes, cleaning products), etc.
Get rid of all scented candles, too. (Sigh! I know!) Do not burn petroleum based candles but plain bees wax if you want candles.
Even battery powered candles can clobber your inner ear and your liver. Really. (Another big sigH) for most are scented and typically from petroleum which offgases when warmed up at all.
GAS HEAT or STOVE? "Air flush" your home once or twice daily - just enough for a fresh air exchange for every room (about a minute of cross ventilation), especially to reach upper levels.
1. GINGER CAPSULES (helps calmdizziness and nausea)
2. MAGNESIUM - to calm down overactive nerve spasms, and the violent "attacks".
3. TAURINE
4. MILK THISTLE (to help reduce the liver reduce toxicty from infection - that toxicty affects ears in all sorts of ways)
5. VALERIAN - the herbal forerunner to the Rx Valium. Easier on the body. A tincture with with a dropper allows for tiny doses to start. Herb Pharm one good brand. Mix in a cup of warm water.
are your best helpers. More detail in thread below. There's a lot to sort through but so worth it.
Just take it a bit at a time - or have a trusted friend or relative help sort out the posts that seem best for you. Maybe they can print out the best so you don't have to be on the computer.
Detail here about the importance of PROTECTING YOUR EARS is also much more vital to those with lyme.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
[ 12-26-2012, 04:57 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- (Another Big Sigh!)
Avoid ALL FLUORESCENT LIGHTS.
Those energy saving lights are nice only in that they save electricity but, IMO, anyone with any kind of symptoms as you describe should be around those - or any fluorescents at all.
The regular incandescent bulbs are hard to find but still around, in certain wattages.
This is really important for reasons detailed in the tinnitus thread.
AVOID ALL BIG BOX STORES or similar environments. -
Posted by Keebler (Member # 12673) on :
- NEVER TWIST NECK -----------------------------
From your top post:
Quote: "If you have a tight neck, or even possibly a skull-to-vertebrae misalignment, that's something for a good chiropractor to determine" (end quote)
Important CLARIFICATION:
NEVER, EVER have any adjustment that suddenly twists the neck or spine. Never. Ever. This can cause severe trouble (even damage) for those with lyme.
I found out the hard way. I've also seen this addressed by the lyme researchers with the same advice to avoid all twist of the neck / spine but I did not gather that source at the time I read it and have not been able to find it again.
But, because lyme in the spinal cord causes so much trouble, the spine must be treated with tender, loving care. NO TWISTS
However, a gentle cranial-sacral method such as UPLEDGER or FENDLENKRAIS can be very helpful. Best with a LL DC (chiropractor), DO (doctor of osteopathy), PT, ND, etc.
NUCCA technique is somewhat gentle, too. I found UPLEDGER much better, though.
NUCCA was actually too forceful for me and they don't do the whole body like Upledger - or allow for "recovery" time before you are pushed out for the next patient.
Massage therapists must also be informed but, generally, they don't twist the neck / spine. Still, tell them beforehand.
While correctly the vertebrae misalignment is a good goal, often, those with lyme are unable to "hold" a treatment due to the severe muscle pulls that lyme toxity causes.
Magnesium deficiency - and also Taurine deficiency - contribute to muscle pulls that can be throw a spine out of line.
Also avoid activity that turns or stresses neck or spine from any direction. Avoid even the mini trampolines. Avoid jumping.
Gentle is the key word.
LLMDs are best to direct you to those adjunct professionals in your area who may be best for you - the ones who are lyme literate or, at least, lyme "friendly" as it matters so very much.
More detail further down in this thread, see the BODY WORK post:
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posted by lymelisa (Member # 39743) on :
Thank you so very much for all your help. I've been seen by countless doctors during years who diagnosed me with "migraine associated dizziness." Trialed approx 10 migraine preventive with zero improvement in dizziness.I have tried benzos to zero help except help me sleep a bit when rocking doesn't enable me to sleep. Will see what LLMD say. I had 1 positive band and 1 indeterminate on igenex. wish there was more positive testing but I know that lyme is a "clinical diagnosis." Been reading nonstop about these weeks. was told countless times by non LLMD that I do not have lyme, but will see what upcoming appts reveal. tried chiropractor. everything - nothing has helped. I lived in a very prominent area for lyme (NY) and was sitting on grass quite a bit, so I think it is possibility. thanks for your help. I am so sorry that others are contending with these horrid symptoms. they have taken my life. I am no longer accepting diagnosis of "migraine associated dizziness" being that 5 + years of meds for that has done zero. thanks again!!
Posted by lymelisa (Member # 39743) on :
so sorry I realized that I forgot to break up the reply. it helps me as well when it is written broken up. I greatly apologize and will write better in future. thank you
Posted by lymelisa (Member # 39743) on :
I copied and pasted above reply Thank you so very much for all your help. I've been seen by countless doctors during years who diagnosed me with "migraine associated dizziness." Trialed approx 10 migraine preventive with zero improvement in dizziness.I have tried benzos to zero help except help me sleep a bit when rocking doesn't enable me to sleep. Will see what LLMD say. I had 1 positive band and 1 indeterminate on igenex. wish there was more positive testing but I know that lyme is a "clinical diagnosis." Been reading nonstop about these weeks. was told countless times by non LLMD that I do not have lyme, but will see what upcoming appts reveal. tried chiropractor. everything - nothing has helped. I lived in a very prominent area for lyme (NY) and was sitting on grass quite a bit, so I think it is possibility. thanks for your help. I am so sorry that others are contending with these horrid symptoms. they have taken my life. I am no longer accepting diagnosis of "migraine associated dizziness" being that 5 + years of meds for that has done zero. thanks again!!
Posted by lymelisa (Member # 39743) on :
so sorry. I thought that would have been written broken up. here it is again.
Thank you so very much for all your help. I've been seen by countless doctors during years who diagnosed me with "migraine associated dizziness." Trialed approx 10 migraine preventive with zero improvement in dizziness.I have tried benzos to zero help except help me sleep a bit when rocking doesn't enable me to sleep. Will see what LLMD say. I had 1 positive band and 1 indeterminate on igenex. wish there was more positive testing but I know that lyme is a "clinical diagnosis." Been reading nonstop about these weeks. was told countless times by non LLMD that I do not have lyme, but will see what upcoming appts reveal. tried chiropractor. everything possible - nothing has helped. I lived in a very prominent area for lyme (NY) and was sitting on grass quite a bit, so I think it is possibility. thanks for your help. I am so sorry that others are contending with these horrid symptoms. they have taken my life. I am no longer accepting diagnosis of "migraine associated dizziness" being that 5 + years of meds for that has done zero. thanks again!!
Posted by lymelisa (Member # 39743) on :
I just reread some responses, and forgot to reply to responses about inner ear every single test I've had including tons of inner ear, vestibular testing, are negative. but, are you saying that lyme can affect the nerve in ear causing such symptoms? yes, I definitely have to avoid such environments, but nothing helps. I am suffering even in my own home with zero lights, etc. thanks again! and, yes, also take magnesium. doesn't help nothing I've tried has helped. hence, why I am here.
Posted by droid1226 (Member # 34930) on :
There's no vestibular testing that will tell you if it's an inner ear thing. Could be labyrinthitis, caused by chronic infection. No ENT guy is gonna diagnose it. The only way to get your life back is address the infection, therefor reducing inflammation (eustachian and nerve)
One positive band and an IND would be enough for some LLMD's to diagnose, especially with symptoms.
Posted by jessicabooklover (Member # 39427) on :
lymelisa, I think droid1226 is correct in stating that no ENT can truly help you with this issue. I have really awful vertigo -its possibly my most disabling symptom-and have had countless ENTS look at me, shake their heads and say, "gee I just don't know what to do to help you."
Droid is also correct in stating that only by treating the lyme can you reduce the inflammation that is causing the symptoms you are suffering from.
I hope things improve for you soon. Believe me I know the misery of chronic vertigo. It is hell on earth when it really hits. Jess.
Posted by Keebler (Member # 12673) on :
- There are balance tests that can show trouble with the inner ear - or the brain balance areas.
A "Platform" test - and others were extremely helpful for me to validate what was happening and the severity.
Those are considered and ordered by neurotologists. A "Neuro - Otologist" is usually far better than most ENTs or other ear specialists. Detail in the Tinnitus thread but most also are not LL.
Again, lyme can cause all kinds of trouble that involves the ears but won't show on standard ear tests. LLMDs are the best to consult about all this first and foremost.
IF the LLMD think you need additional consulting, they will guide you. Other than to validate symptoms (which certain tests may or may not do), they won't help with treatment.
Stick with the LLMD - first and foremost. -
Posted by droid1226 (Member # 34930) on :
I've seen 2 neurotologists, did EVERY test including the platform. It resulted in them both prescribing a decongestant and 2mg valium daily. The only test that showed anything was the caloric reflex test, which showed abnormal results.
Stick with addressing lyme and/or stealth infections, it's the root cause.
Posted by lymelisa (Member # 39743) on :
Thank you for the kind responses
I actually am very familiar with vestibular disorders as I have seen a plethora of neuro-otologists, etc. during the last almost 6 years. I have had multitude of vestibular testing.
What I was wondering was if lyme can be the root cause of such severe vestibular symptoms, as I haven't heard much discussion of severe disequilbrium - unable to walk/stand without severe rocking. I also have many, many other symptoms, fatigue, hypersensitivity to any stimuli, flu like symptoms, to name a few.
Droid1226 - thank you for your helpful answer. So, lyme can be the root cause? after almost 6 years of neuro-otologists and over 10 meds for supposed"migraine associated dizziness" I am pursuing the lyme route. I look forward to my appts with LLMD in few weeks, although fearful of the road ahead. but, more afraid of living this sick
Posted by Keebler (Member # 12673) on :
- Q: if lyme can be the root cause of such severe vestibular symptoms?
Absolutely.
Much detail in the Tinnitus thread about how EACH of the symptoms you list is just part of having lyme (and other TBD) for many.
Lyme can affect the vestibular system &/or the brain areas that control all the various functions of balance. Any of that can also affect speech, thinking, reading, walking, etc.
Liver stress from lyme also affects the vestibular system. Again, details in the Tinnitus thread. -
Posted by droid1226 (Member # 34930) on :
Lisa, it's the reason you are feeling the way you are, no question. Saying "migraine associated dizziness" is an easy way of feeding you symptom managing drugs for a long time. What you posted, I went through exactly. I felt suicidal, couldn't see straight, had rocking feeling, electrical zaps, etc. Especially when you say hypersensitivity to stimuli.......Screams lyme!
Bite the bullet and get a full co panel of infections, besides a re-test for lyme. Even though it's pretty obvious, you're LLMD will want to see what's going on.
Simple fact is, the Dr's you are seeing don't test for lyme and when they do, they interpret the results incorrectly because they aren't specialists.
Posted by Keebler (Member # 12673) on :
- Ditto to droid:
"Simple fact is, the Dr's you are seeing don't test for lyme and when they do, they interpret the results incorrectly because they aren't specialists."
Exactly.
They also know nothing about lyme - neither how it can affect a body nor how to address it. -
Posted by Keebler (Member # 12673) on :
What ILADS is & WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posted by lymelisa (Member # 39743) on :
Keebler - thank you so very much for your time and answers. means a lot. I'm sure you heard this story a million times, general lyme tests negative, neurologists say no way could it be lyme. continue to treat me for "migraine associated dizziness" (unsuccessfully). I have done nonstop reading on lyme these pasts weeks, and it has been eye opening to say the least!! my husband is a physician (neurosurgeon) and also had no clue about lyme, and he is convinced I probably have lyme. we have both learned so much these weeks. we cannot stop reading, as much as my sick head will allow. I finally had one positive and one indeterminate on igenex and still, of course, was told it's nothing. i will be seeing 2 pretty well known LLMD in NY in two weeks. I look forward to it, although afraid of road ahead.
you are so knowledgeable - wondering if you could maybe answer these questions or try to.
1) some people with diagnosis of "migraine associated dizziness" actually get better with migraine meds which eradicate their rocking, etc. perhaps, some of them truly have migraine associated dizziness. however, is it possible to have lyme but a med just covers up symptoms?
2) I have a migraine history. prior to the development of vestibular symptoms my migraines were getting worse and worse. I always attributed increased migraines to being on birth control pills. of course, there is 1) possibility that I got lyme before vestibular symptoms leading to increase in migraines first 2) but then I wonder why someone with a migraine history would be more likely to have symptoms of "migraine associated dizziness" when they contract l yme. does lyme bring out a predisposition? maybe since I had migraines, my predisposition was more for vestibular symptoms when I contracted lyme? I've been wracking my brain with this question. there might never be a good answer or any answer to this.
3) also my symptoms greatly worsened during pregnancy and after delivery, which made me more convinced my vestibular symptoms were migraine in nature. but, I am reading that lyme can vary with hormones as well. is that true?
thanks again.
Posted by Talktel (Member # 7980) on :
Lisa, Lyme vertigo has competely disabled me!
Its the Lyme and/or co.
THis is one of my worst sx.
Posted by lymelisa (Member # 39743) on :
I am so incredibly sorry you contend with this as well. I've had horrific rocking sensation for almost 6 years. standing/walking nearly impossible without using a walker. it is so incredibly disabling. along with so many other presentations of dizziness. i wish you best of luck on your recovery. what does your dizziness feel like?
Posted by Talktel (Member # 7980) on :
same like yours.
rocking, tipsy, balance completely off, feeling like I'm falling. Sometimes my heart lurches in tandem with the vestibular, dizzy problems.
I cannot walk outside; this has made me a shut- in. At home, sometimes I walk holding on to walls or counter.
I'm herxing now bigtime, am on stron IV meds, and very very dizzy tonight.
I use to be a very productive woman, in a very challenging occupation and mom and grandmom.
I wish I can get back to the way I was, or at least in a very functional way.
I hope things improve for all of us suffering from this disabling sx-and disease.
Posted by lymelisa (Member # 39743) on :
Talktel - I feel for you so deeply. yeh. I cannot walk in my own house without holding on. it's horrific what this illness can do to a once, healthy, active, person! I'm wishing you all the best of health. I see you are from NY. if you feel comfortable, would love to know who is treating you? I have a few upcoming appts. just starting the lyme process, after likely being misdiagnosed for almost 6 years. you can private message me doc info. thanks so much. hope you get well and I'm so sorry again
Posted by Talktel (Member # 7980) on :
Lisa,
I just PM'd you.
I feel equally for you. But there is hope and you will get better. You need to get appropriate treatment.
let me know what happens.
Posted by Keebler (Member # 12673) on :
- lymelisa,
I see that you have some more questions but my eyes can't read more than about 3.5 lines of solid text without a space break - and I'm pretty much toast now, anyway.
Nearly all I know can be found in the links sets I post. I hope those help -- and also the answers from others, too.
Bottom line: get to the very best LL doctor you can, one who with lots of experience & who is continually learning more and growing. Good luck. -
Posted by Keebler (Member # 12673) on :
- I was able to see that you say:
your " symptoms greatly worsened during pregnancy and after delivery. . . . " (end quote)
Be sure to tell this to your LLMD.
The LLMD may determine that the child should also be assessed (or at least watched over time) as lyme can be acquired from either parent (from father during conception or from mother during anytime in pregnancy).
I hestitate saying this but it's important to know. I wish you the very best of luck as you find the very best LL doctor possible.
Take care and take this one breath at a time, keeping your sense humor and awe of life as much as possible. -
Posted by Keebler (Member # 12673) on :
- And, the subject of Rx for diagnosis of "migraine associated dizziness"
If it helps relieve symptoms, great - IF it does not harm the the liver or kidneys. Some Rx can be ototoxic.
See the Tinnitus thread for detail on the safety of some methods.
When Rx help symptoms for those with lyme, it can mask but it may be needed for quality of life during treatment for the underlying CAUSE.
Start with the safest ways first, though. GINGER CAPSULES are the place to begin for some help to reduce dizziness.
LIVER SUPPORT & and several HERXHEIMER support links, too.
Some KIDNEY support detail, and
LL ND (naturopathic) link here, too. -
Posted by opus2828 (Member # 15407) on :
I had unexplained vertigo and dizziness for 6 months and then went on to develop POTS. I truly believe that in my case anyway, the vertigo is part of dysautonomia.
This is when the autonomic nervous system malfunctions.
I am currently treating my infections but also just started biofeedback with the EmWave 2.
I had all the ear testing done and that was normal. So they said MAV. But I don't have a history of migraine. I believe it is lyme and it is coming from the nervous system as its source.
Unfortunately, there are no easy answers. No quick answers.
Posted by lymelisa (Member # 39743) on :
thank you for all the help! much appreciated
Posted by Keebler (Member # 12673) on :
- Opus has an important point that everyone with lyme should consider as it's so prevelant for this population.
POTS and a similar reaction, NMH, are discussed in the Tinnitus thread and in the Cardiac Thread.
For a quick definition, just web cross search each term with "low blood pressure"
Most LLMDs will consider these two as they certainly affect many with lyme and can cause vertigo and dizziness, and nausea plus a whole host of other reactions. -
Posted by Keebler (Member # 12673) on :
Topic: To everyone with CARDIAC symptoms please read!
Includes:
Cardiac explanations & support
Dr. B's SAFE EXERCISE and PT Rehab guidelines,
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
MITOCHONDRIA, MYELIN & ADRENAL SUPPORT -
Posted by lymelisa (Member # 39743) on :
thank you for the feedback. I will see what LLMDs say in 2 weeks. my biggest fear is treating lyme if i don't indeed have it. but, then again, my biggest fear ever is having to live like this for the rest of my life
Posted by Keebler (Member # 12673) on :
- lisa,
You say: "biggest fear is treating lyme if i don't indeed have it" (end quote).
If you don't likely have lyme, a LLMD will not treat you for it. You are not going there with an order for them to treat you for lyme but for them to ASSESS YOU.
If you test positive for it (given the correct ways to assess testing detailed in links above) -
- or the LLMD's professional clinical experience and your history / symptoms lead to that conclusion - your biggest fear is not treatment but the results of untreated lyme. Believe me.
Unrecognized and untreated lyme can be beyond horrific in so many ways.
With all your symptoms, assessment with a LLMD seems best, and they will consider much more besides just lyme that most other doctors don't.
While lyme is difficult to treat and it's sure no walk in the park, there are many support methods that help to better tolerate and enhance treatment. -
Posted by lymelisa (Member # 39743) on :
agree completely. if what I have is lyme, I certainly am living proof of the harm of untreated life. I've literally lost my life. I am bedridden and tortured. would do anything to get my life back. I had a wonderful life
Posted by Talktel (Member # 7980) on :
You will with treatment...if you have lyme, work your way to regaining that wonderful life.
Its a hard rocky road, but there are many people who do get better. They are not posting here, because they are leading very functional lives.
I'm at a new LLMD now, and on IV abx treatment for co-infections, and I thankfully feel a huge difference already.
This new LLMD discovered issues that I have that were previously not known, or not adressed.
My concern is my inability to tolerate treatment due to colon issues.
But I feel stronger and clearer as the IV gets infused.
With proper treatment you will too.
Posted by Cass A (Member # 11134) on :
Dear Friends,
Major vertigo, being out of balance, and feeling spinney were some of the most debilitating symptoms of Lyme for me. This progressed to seizures. Ugh.
Nothing chemical---pharmaceutical or herbal--had successfully dealt with this situation.
IN ADDITION to any direct treatment for infectious agents found, I definitely recommend using an inversion table as often as possible, but not actually hanging from your ankles.
This helps to get the blood flowing, especially getting oxygen into your brain and getting used blood our of it. You can see posts relating to chronic cerebral-spinal venous insufficiency (CCSVI) to get more data on why this is a big problem.
Dr. F has found that 100% of the patients he's seen that are over 25 test positive for the "Fry bug" he discovered. A major health-defeating action of this "bug" is to clog up blood vessels with a slime similar to the trails left by slugs and also cause hypercoagulation.
These adverse effects make it hard to get nutrients into the brain or toxins out of it.
Various vitamins and herbs can help get the blood flowing better. Some are Rechts-Regulat, ginko, huperzine-A, garlic.
Addressing the "bug" directly is another topic--I haven't personally started on that one yet.
But, the MECHANICAL action of inversion really helps with this situation! Recently, I've personally been using inversion to address fatigue, pre-seizure auras, upsets, and any other things attributable to nervous system problems. Instead of popping a pill, I go "hang upside down" for a few minutes.
I'm trying to do this, whether I have symptoms or not, 3-6 times a day.
It is definitely helping---in just a few weeks!
I'm now convinced that this inexpensive inversion table is one of the most effective things I've done for myself in this long, long battle.
Best,
Cass A (Lyme rash in 1998, undiagnosed until 2005)
Posted by lymelisa (Member # 39743) on :
Cass A - thanks so much for taking the time to write back and help me. wondering - did you experience rocking sensation when walking and standing? it's horrible. almost 6 years for me. also have spinning in head, etc. feel better! so your doc thinks lyme can cause all this. such a cruel illness
Posted by lymelisa (Member # 39743) on :
just wondering how inversion table can help without addressing underlying issue - LYME?
Posted by Linnada (Member # 24302) on :
lymelisa I was diagnosed with many vestibular disorders over the years, the latest was vestibular migraines. I also have the constant rocking sensation that never goes away.
I think I have FINALLY figured out what has caused mine: Lyme disease for many years caused my immune system to be weak and I developed a FUNGAL sinus infection.
I have had sinus problems throughout my time of being sick that was always connected to my dizziness. Treatment with a nebulizer with antifungals to the sinuses is making the dizziness go away! It's wondeful!
Please do a search for my username and read my story I posted a few weeks ago. It describes my journey and everything I am doing and have done up until now.
Hopefully, you can learn from some of my mistakes and get better soon. Please PM me if you would like more specifics.
Posted by Talktel (Member # 7980) on :
I would assume it probably helps because its masking the sx, not healing it.
Its like when you have an URI, and take something to decongest a stuffed nose. It doesn't take away the cold but may make you feel better
Unless the inversion table helps just my merely stimulating perfusion to the brain.
Posted by lymelisa (Member # 39743) on :
thank you!
Posted by lymelisa (Member # 39743) on :
anyone else with 24/7 dizziness?
Posted by lymelisa (Member # 39743) on :
anyone else dizzy?
Posted by pug7 (Member # 36995) on :
I have been dizzy for about 30 years. I sometimes throw up, and have also fallen many times. I was treated for 6 years for Lyme with positive testing, and all those antibiotics did little for my vertigo. And if I could do it over again, I would have limited meds to one year, because there are so many residual effects from the antibiotics, mostly GI, but some neuro from yeast. So antibiotics may even have worsened the vertigo.
There are physical therapists who specialize in this problem and who can be very helpful. They measure nystagmus in the eyes, which can cause dizziness, can can evaluate spinal issues, ear issues and neurological causes, including brain-based. They do a very full evaluation.
I have had both physical therapists and chiropractors tell me that there is some narrowing in the space around my cervical spine, and that certain movements therefore partially block or affect blood flow to my brain stem. One PT also said that my top vertebra "translates" (moves over) a tiny bit which twists the second vertebra in such a way that blood flow is affected. I am skeptical of any one cause though.
I also have some brain lesions in white matter. I am now 62 so this could be normal, or not.
And fluid in my ears, especially the right.I also think allergies and environmental sensitivities can contribute. Minimize exposures, aggressively.
Weather can be a factor (snowstorm here last night)
So take your pick on causes. What matters is what works.
The problem here is that dizziness crosses many medical disciplines, and the MD's in one discipline know less than you think about the others. I would seriously rely more on a physical therapist who specializes in vertigo.
I also tried orthogonal chiropractic, which uses x-rays of the cervical spine and then a device that gives a nudge to the very top of the spine that is so gentle that it cannot be felt.
Balance comes from the brain, the neck, the eyes, and one's sense of orientation in space. I think it helps to deal with each, and also to use one source of balance in the body to compensate for another.
I suspect a sort of symphony of causes from these various sources, for myself. "Migraine" is a diagnosis that people get when doctors don't know. In random order, here are things that I use:
Sudafed, decongestant (daytime) Claritin (daytime) or Benadryl (night) Ben Gay on my neck has a remarkable effect on my vertigo when neck is involved Baclofen, an MS drug, that also deals with neck Physical therapy Chiropractic, including orthogonal- NO cracking Walks on a straight route Cold, external or internal (ice cream!) Autoinflation of ears (hold nose, blow out, pop ears) and chewing gum Haven't tried wrist bands but a possibility Tai Chi has helped. I have added something called Nia. Any exercise form that maintains alignment.
Magnesium did not help me. IV magnesium can calm the brain but for me, that meant fatigue.
What migraine med was used for you by the way?
I would not jump on the Lyme bandwagon too eagerly. I know you have tried many things. This could also be viral, which is not addressable through antibiotics, obviously.
I think that most MD's, no matter how expert, won't be that much help with dizziness. Medicine is "evidence-based" and for the most part geared to finding one cause that can then be addressed. Vertigo is complicated, and the cause is hard to diagnose.
I try to chip away at it, so to speak, without expecting a cure entirely. Some days I need to be more aggressive. I am assuming that your vertigo fluctuates some. Do you see patterns?
Hope this helps.
Posted by lymelisa (Member # 39743) on :
thank you so much for your response. i have actually seen plethora of vestibular specialists - ENTs,neurologists, neuro-otologists, chiropractor, PT, and list goes on and on and on. and, they haven't helped at all. every finding is negative. I don't have vertigo per se. more violent rocking sensation, always.
Posted by Cass A (Member # 11134) on :
Dear Friends,
After about 7 years doing various treatments for Lyme (once it was diagnosed) and the 9 years before that when I had no idea what was going wrong, I have tried many, many things.
It finally became clear to me that brain blood flow problem was a KEY to anything actually working.
Dr. F has found that the organism he discovered puts down a "slime trail" like a slug inside the blood vessels that can't be gotten off glass slides. So, what is that doing to the very, very tiny blood vessels that are trying to get nutrients into the brain and toxins out of it?
There are also other causes of clogged blood vessels---biofilms, fatty deposits, etc.
Some people, in trying to treat this situation, have had operations to physically clean out the veins coming from the brain or put stents into these location. But, according to Dr. K, only about 30% of the people undergoing this treatment have had lasting benefit. Dr. K says it is like treating 2 inches of a system that extends clear to the moon and back.
So, doing a more over-all MECHANICAL therapy, since the chemicals couldn't even get into the area efficiently, seemed sensible to me.
And, it is DEFINITELY WORKING!!!!!
I'm not saying that it replaces any needed treatment for Lyme, the Fry bug, sinus problems, biofilms, parasites. But, if whatever treatment you're doing assumes that the blood is flowing, but it isn't, how effective can that treatment be???
If you don't want to invest in an inversion table, try out a slanted board resting on a bed or some other way of getting the head lower than any other part of the body. See if it helps you. Apparently there are some conditions, such as high blood pressure, where a person shouldn't use an inversion table--that's at another thread I started on this topic on Dec 28--you can find it by searching for "inversion table."
Let's hear your experiences!
Best,
Cass A
Posted by pug7 (Member # 36995) on :
Did you see the kind of physical therapist who specializes in vertigo or vertigo-like problems, who tests for nystagmus (eye movements)?
Posted by lymelisa (Member # 39743) on :
yes
Posted by pug7 (Member # 36995) on :
It seems as if it would be worthwhile to try meds for Lyme if you have exhausted all other avenues, but obviously don't expect any magic solution from meds at this point (though some do have significant improvement for this type of symptom). You already have appointments, so it seems as if you are on that path and have the resources to try it. Take probiotics as your MD will tell you.
I will just mention again that Tai Chi has been really helpful. Most of the people in my class have some sort of medical issue going on, and a few stand against the wall while doing it, to maintain balance. I have made more progress from Tai Chi than anything else, but everyone is different.
Posted by lax mom (Member # 38743) on :
I couldn't read everyone else's responses.
Vertigo was one of my first symptoms. I went to an audiologist who did the canalith repositioning therapy.
My vertigo went away doing the home exercises.
According to this website:
"Some have suggested these exercises also might work through habituation, where the repetitive stimulus to the brain reduces the brain's response to it."
My youngest had dizziness/nausea 24/7 for months prior to diagnosis. It was on his 3rd month of IV rocephin that the dizziness ended. I haven't filled a nausea script since. He has POTS and still has some lightheadedness upon standing. He takes florinef and a beta blocker for it. It appears that his POTS symptoms might be around long after Lyme. I was really hoping that it would all be cleared up.
Posted by Talktel (Member # 7980) on :
I would think that your sx are very typical of Lyme between your posts regarding dizziness, floaters, and probably a host of other neuro challenges
![[Frown]](frown.gif)
, spinning sensation in my head, brain zaps, extreme fatigue, flu like, migraines.