hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
My daughter has been having a problem since last weekend...she feels drunk, becomes off balance, and stumbles, but is not dizzy.
These symptoms began with an odd cluster of neurological events over Thanksgiving weekend. Her eyes would twitch, then she felt like they were going to roll back in her head. She had difficulty swallowing, and was swallowing more air than normal. She also had a diminished sense of touch in her hands. Her hands and arms felt weak.
The neurological problems went away that day, but she still had times when she would be off balance and stumble. She kept telling me she felt drunk, but not dizzy...kind of like looking at a carnival's Fun House mirror.
We were out of town and it was Saturday evening. I took her to the ER. I didn't know if she was getting ready to have a stroke or big seizure or something else major. I was very concerned but couldn't put into words why I was so concerned.
The ER didn't look in her ears. They prescribed anti-nausea medicine similar to Dramamine. It didn't help.
My daughter has been in an increased amount of pain the last few weeks. I took her to our Urgent Care physician Tuesday. This is a good physician. He saw fluid in both ears, so I was glad it was something he could treat.
She was given a antihistimine to dry the fluid (meclizine), and something for congestion & coughing (crantex LA = guaifenesin & phenylephrine). She already had a Rx for Anti-vert from the ER.
It's been 48 hours since she began the medication and she's feeling worse rather than better. She complained of feeling fluid in her ears this morning. She fell this morning when she lost her balance.
She has appointments Monday with an ENT and a neurologist. The ENT will have to refer her for vestibular testing. Sounds like she'll have to wait longer for thorough testing & an accurate diagnosis.
Her LLMD recommended that she see an ENT and that she have vestibular testing to differentiate between Lyme inflammation and a vestibular problem.
Nerve damage or inflammation can cause vestibular neuritis. Sound like a familiar tune?
...seems like just another problem secondary to Lyme. Shall we put a twist on Dr. VTS's phrase and call this "Bell's Palsy of the Vestibular System"?
There's information about vestibular neuritis and a drawing at:
We'll see how the ENT and neuro appointments go on Monday. Hopefully her ears will have dried out and she'll be back to normal.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I was told I had vestibular neuronitis... before I gor diagnoses with lyme
Posts: 28 | From Long Island | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I also assume that she is not ingesting any form of aspartame or MSG.
The eye twitching could be nystagmus, actually from inner ear stuff. And although she was not dizzy, a feeling of "drunk" (for no reason) can be a sort of vertigo. Vertigo takes on in many forms. Anytime the balance is affected or feeling of unsteadiness, that can be vertigo.
What you describe could also be a sort of seizure from a connection of lyme and how it affects the inner ear system - and then short circuits the brain.
Many neurologists are just out to lunch on this, however, so wise selection is needed for anyone you see. True, it may be other things, but if the doctor does not know about TBI or vestibular influences on brain waves, that won't be the most educated evaluation.
In my experience, if you can treat the infection, they symptoms get better - unless this originated from a blow to the head or spine or she has recent chemical exposures (new carpets, new particle board exposure, scents, etc.)
Also, from my experience in vestibular & lyme, few ENTs and neurologists have a clue about lyme.
Be sure none of her new meds are ototoxic. You can just google or PubMed the name of med with the term. You might also see if the new meds use the Cytochrome P-450 liver detox pathway.
If that pathway is not at its best (as is frequent with lyme, etc.) some of the side-effects may be from toxicity of the drugs not clearning her system and excess porphyrins can contribute to vestibular symptoms. Stable water intake is good as are frequent small meals.
Even though the ear docs might advise low-salt, if she fell on a low-salt diet, salt may help her blood pressure to not dip if that is part of this. Vertigo, nausea can make that happen. I would advise monitoring variations in salt - and use sea salt, not grocery store table salt. It acts differently in the body.
Ginger may help. The anti-vertigo/nausea meds make my muscles turn to jello.
[ 29. November 2007, 07:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I am unclear as to if the eye twitching or the fall happened after she started the medication below. If so, there may be a connection as some falls can be drop seizures.
While the eye twitching may be nystagmus it may be seizure activity.
So, this is from Wiki, still, it's a place to start regarding this
Patients with a history of epilepsy and on anticonvulsant medication should not take this substance. The drug interaction might produce seizures. ----------------------------
(it says AND on anticonvulsant, however, in my experience, simillar products were not easy for me to tolerate even alone. I find ginger works much better for me and I don't feel so weak and hung-over from the drug.)
posted
I am so sorry your daughter is experiencing this!
I'd be the last person to label whatever this is, but there was a strong connection to Babs treatment and the lessening of symptoms for me. Like your daughter, I felt the off-kilterness and inability to follow movement with my eyes really frightening; it brought about anxiety, sweating and nausea -- plus the desire to remove myself from any visual/auditory stimulus and just hide under the covers with my head very still.
Years before my Lyme diagnosis, I suffered from what doctors intially called "verstibular neurinitis." The balance issues were horrendous, but not deemed Meniere's Disease. I, too, was given Antivert which made me absolutely weak with fatigue.
Over the years, the vestibular neurinitis became worst during allergy seasons for me as well as whenever I had exposure to strong chemicals, perfumes, etc.
I noted that I got awful ear pain and dizziness during my periods. Dizziness was often brought on by barometric changes that were sudden rather than gradual. I had to avoid sweets and caffeine like the plague. I lost 35% of my hearing.
Next, the otoneurologists called it "otosclerosis" and treated me with all sorts of calcium supplements that my gut had difficulty handling. Eventually I was put on an IV drip of Zomeda -- an experimental attempt to reduce the calcification of my earbones.
What I can tell you about this path is that when I finally started treatment for Babesia, my symptoms flared and then got a lot better. My hearing returned; I compensated for most residual loss of balance. By the way, Zithromax brought on horrible ear-ringing and I eventually had to stop taking it; its ototoxity is reversable, however.
I wish you and your daughter the best in figuring this out. My heart goes out to you.
Best,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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wiserforit - what treatment did you do for babs?
I was dx + but unable to get LLMD tx . . . I've used artemesinin but no others.
I've often wondered if I retreated with artemisinin if that would help.
I would like to hear how your vestibular stuff cleared. I feel like I'm on a bad carnival ride all the time.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
My daughter doesn't use aspartame or MSG.
She had nystagmus in the Urgent Care office while tracking the physician's finger.
She's had some eye twitching recently and times where her eyes have weird spasms like they're slamming shut...in the last month. In the past she's had eyelid twitching and other odd "mouth" seizures (mouth draws closed and toungue doesn't work right).
I took her to Urgent Care a couple of times since mid-November for nausea that wouldn't respond to any medicine...neither phenergan nor something old & stronger that usually makes vomiting stop. Tribmethobenzamide She had abdominal pain, which seems like it was from silent reflux at the same time as the unrelenting nausea. The nausea has resolved.
Meclizine (Antivert)can cause a drug interaction in those taking narcotic pain relievers. A physician should know their patient has seizures before prescribing Crantex LA.
Trimethobenzamide also cautions against giving to patients taking narcotic pain relievers. All 3 of these list severe dizziness as a serious side effect of the medication, such as an allergic reaction. My daughter says she is not dizzy...just feels off balance. Semantics
Now it seems like these events may be related due to involvement of the 8th cranial nerve...the vestibulocochlear nerve.
"The vestibulocochlear nerve is responsible for the sense of hearing and it is also pertinent to balance, to the body position sense. Problems with the vestibulocochlear nerve may result in , (ringing or noise in the ears), vertigo and vomiting." copied from Tincup's Cranial Nerve list.
The odd thing is that she has no ear pain, despite having fluid in her ears.
She has gone off medication for Lyme & bartonella for 3 weeks. She was taking septra ds, azithromycin, and plaquenil. She also went off Lyrica & Lamictal and cortef. The ER thought this alone could have caused her loss of balance and neurological events.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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My heart goes out to you your daughter. I've been dealing with similar for about 10 years, but am finally slowly getting better with the abx protocol I'm on.
Meclizine offered me no benefit, and in fact contributed to painful digestion-related problems that linger to this day.
I travelled down the same path you are. Lots of ENTs, tests, ideas of vestibular nerontinitis, etc. Spent lots of time and money, but that path offered no solutions.
I'd tend to agree the change in meds might have brought this on. Maybe reintroducing those meds gradually will help?
IMO it's odd for her to be taking cortef, a steroid that can depress immune function, at the same time as abx. High doses of prednisolone, another steroid, takes away the vestibular symptoms for me pronto, but you can't safely stay on that stuff long. I interpret my reaction to that med a good indication my immune system is in overdrive, fighting infection, and causing inflammation that results in the symptoms I feel.
Posts: 727 | From USA | Registered: Mar 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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a Very gentle cranial-sacral technique can help the cranial nerves.
I can't do the "snap+crack" style, but I see a D.O. who does a very gentle treatmment for the entire spine and extra on the neck and skull.
it helps, but is best with the treatment for lyme /TBD for those who can do that - as the hands on can help free up some of the skeletal stuff and the Rx can help with infections.
Resting at a 30 degree angle (head elevated, feet lower) is the most stable position for the inner ear. Circulation to the inner ear is rather spotty and this helps.
FISTULA ? Oh . . . at the ENT on Monday, ask if they can check for a fistula. you can read about it at the VEDA link above. Trying some of the remedies over the weekend might be somewhat diagnostic in nature.
The 30 degree angle resting is wonderful to help tissue heal.
Try to keep from sneezes, etc, but also do not block them if they come. Gentle is good. Some people close up their noses, so to speak, so they don't sneeze. Figuring out how to - if you must - sneeze without having it all back up and putting more pressure on the ears is important.
Some ENT's like steroids so, as mentioned above there are precautions and cautions if lyme. Dr. B. has written about that.
Best of luck in this. I still find help with ginger, too.
You are amazing to do all this research - knowing that each of us just hands you more homework with our thoughts.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I appreciate all of your suggestions and advice.
My daughter goes next week for an ENG (electronasography) to 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 ENT said she didn't have fluid in her ears. The neuro didn't notice she had no gag reflex and that her eyebrows were at different levels. I wasn't present for the wxam or I would have pointed these out.
I wonder if my daughter's medicine could have caused nerve damage to her inner ear? ..or if this is just inflammation caused by Lyme...
These symptoms come & go. She was fine Monday, but was off-balance again Tuesday morning.
These symptoms are making her get further & further behind in her schoolwork, which is already limited.
Funny: The neuro's staff was very child phobic. I stayed with my 2 little ones in the lobby during the neuro exam. I got a laugh when they wouldn't allow my 5 year old go to the bathroom alone...they insisted I go "help" him.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I had most of what is being described for a long time (15yrs). Finally got a lot better after Babesia tx with mepron/biaxin/art.
Posts: 184 | From CT | Registered: Aug 2006
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