lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
This taken from mv vertigo.org this is what the ducks at Yale told me! They could have been worse though.
Migraine-associated vertigo (MAV) is a syndrome consisting of dizziness and/or vertigo that is suspected to be related to migraine. Many patients diagnosed with MAV do not have headaches, or have chronic non-specific headaches that don't fit into the migraine classification developed by the International Headache Society. The cause of this condition is unknown but progress is being made through clinical experience and genetic research. This condition was previously rarely diagnosed, but is now proving to be one of the most common causes of chronic dizziness and/or recurrent vertigo.
Sufferers often describe chronic dizziness and dysequilibrium in the form of a "rocking" sensation when still, recurrent episodes of rotational vertigo, chronic daily headaches, migraine headaches, light sensitivity, poor visual acuity and other changes in vision, visual "snow", nausea and severe motion intolerance. Many of these symptoms cannot be objectively observed or tested for, so physical and neurological examinations (including neuroimaging) are often completely normal. Patients generally do not have all of these symptoms - in fact those with chronic dizziness have quite often not experienced acute rotational vertigo or even a migraine headache.
MAV is often misdiagnosed as Meniere's Disease, Vestibular Neuritis or as a psychiatric disorder. A condition previously described, known as "atypical Meniere's" is no longer recognised and is believed to be a migrainous vertigo sydnrome.
This site is being updated regularly with new articles, information and forum posts. Please check back regularly.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
^
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
My vertigo (feeling of being on a boat), dizziness, balance issues, visual snow, light sensitivity, and other visual problems were diagnosed as visual midline shift syndrome and post trauma vision syndrome.
-------------------- -Love and Gratitude Posts: 69 | From another planet far far away | Registered: Oct 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
--
LymeHerx,
I'm pretty sure you've seen this thread yet I'll post it for others who may have various kinds of vertigo (even if it's caused by lyme and has been misdiagnosed as other stuff):
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Yes keebler we cannot forget.
I bet some people have this symptom and dont even know what its called!
That was me when I got my first attack, I thought it was a brain tumor. Boy was I wrong, now its 24/7 and does not go away.
I might try calcium channel blockers next. Oh the joys of having insurance and a poverty wage.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
I am also constantly dizzy/lightheaded, have light sensitivity, floaters, and occasionally do fall and/or faint. These were my initial symptoms and still seem to have Drs stumped.
Two Drs dx'd me with orthostatic intolerance while another said I don't have it although it is borderline. I do have consistently low BP and a slow pulse but again, they can't seem to find a real reason for it.
Very frustrating as this prevents me from driving, working, living, etc.
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
| IP: Logged |
posted
I've been searching for a MAV solution for the past decade. Progress is very slow. What I've learned via much study and experience is that MAV for lymies is connected to our overactive immune system.
Turn down our immune system with high doses of steroids, and the MAV goes away.
In my experience, this connection is via neurotransmitters: boost the neurotransmitter GABA, and the MAV abates.
Poke around medical journals and you will see that this immune system - neurotranmitter connection has been a busy area of research the past 10 years.
Given this connection, MAV is simply another lyme symptom. MAV itself can be treated, but for real success, the cause must be treated, and that means killing off the Bb infection.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
dguy,
You said: " . . .Turn down our immune system with high doses of steroids, and the MAV goes away. . . ."
--
According to top LLMDs, (unless in a life threatening situation - or eye or lungs in serious distress) . . . Steroids are to be avoided during lyme treatment.
So, I'm confused.
Did you take the massive amounts of steroids?
I would love to know more because if you did, did you also have a very specific abx protocol from your LLMD?
I agree that MAV can be simply another lyme symptom and it can disappear when lyme (or other chronic stealth infection) is successfully treated. But the steroid approach can backfire.
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.
Excerpt:
. . .
"Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!
. . .
Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I would never try high doses of steroids. That article is very interesting when it talks about the immune compounds that contribute to the vertigo.
I just never heard of anybody say MAV.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Has anyone tried calcium channel blockers?
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
Keebler - I very much agree steroids and lyme don't mix. This is why I now also avoid vitamin D, which is a steroid pre-cursor.
I was describing my experience with steroids before I knew about the infection. Since steroids stop my symptoms, including MAV, it was a huge clue to me that these symptoms are due to an overactive immune system. Find and treat the cause of this overactivity, and the MAV will be cured.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
posted
What long-term problems can occur when steroids are used in a Lymie? I was first treated with steroids prior to diagnosis for my low platelet count.
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Capa,
it's hard to differentiate what symptoms can be the effect of steroids or the infection. The thing is that steroids make the infection fiercer.
I don't know how long you were on steroids, but may of us here were - before the lyme diagnosis.
If you are getting treatment now, that is what matters - and it's important that your doctor know about past steroid use in case that changes the way s/he may prescribe tx.
good luck.
==========
in thinking of how steroids can calm down symptoms, much is because the inflammation if usually greatly decreased.
While an overactive immune system - itself - is possible without infection, so often we are all told we just have an overactive immune system when, in fact, it is overactive because it is looking for the infection that it knows is there but lyme is such pro at hiding.
An "overactive immune system" can, sometimes, be an undiagnosed infection. And that infection will cause inflammation.
If steroids calm that down, it may not indicate so much an "overactive immune system" as from one that is working overtime trying to find the lyme bacteria's hiding place.
And, as I understand it, with lyme, part of the immune system is overactive but another part is very much not working at all - and that is not something the guys to give out the steroids seem to consider.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic