posted
I am doing terrible, this rocking sensation is with me all day/all night and I have developed terrible headaches above my eyes and both my temples. What is this everyday? I am only on ABABS, llmd retesting everything in two days, then wait three weeks for results. I am going to scream, cannot stop crying. So scared.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi Linda
Here are some ideas that might help you from previous Lymenet posters ;
posted
Thank you so much. It is frightening living alone and trying to deal with this. I started low dose Zoloft a few days 25 milligram but maybe I should cut that in half because I felt it made me worse. I will talk to my llmd about some of these suggestions. I do have mepron in the house, maybe I will start it up again.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
posted
can you herx on just ababs? I am not taking anything for herxing, should I with just a herb?
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
My go-to detox. . . 2 cups or 1 lb Epsom Salt bath. 20 min in warm water.
Bring phone to set besides tub for emergencies and piece of mind. Also bottle of water to drink, play music to pass the time. It will relax you, will replenish magnesium, take away pain, and detox your body.
Posts: 2978 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
Bonnie, I was doing that and then I got this terrible peeling on my palms and feet. I got rid of the palms but my feet are terrible. I see a dermatologist again tomorrow. The other one didn't know what it was and said to stop the Epson salt baths.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Taking a top grade magnesium pill was better for me than any epsom salts bath as my skin also could not "do" these at all. And magnesium must be taken 3 x a day or it won't stick around in the body.
You say: " . . . Zoloft a few days 25 milligram but maybe I should cut that in half because I felt it made me worse. . . . "
If it makes you feel worse, it's shouting a clear message to your body. A very clear message.
And, as I recall you are still weaning yourself off of Ativan. That, alone, can cause all the vertigo / balance and even emotional effects you report. It really can. So as you continue to wean off that, GINGER capsules might help
but so will avoiding other ototoxic drugs that make you feel worse and aren't even addressing infection.
IMO, one simply cannot "detox" themselves out of a reaction to a drug / several drugs that are ototoxic in nature with the side effects that cause this maldebarquement sensation.
And some "detox" methods are just too hard on the body. Liver support is a more steady approach.
Lyme, itself, as well as other TBD can CAUSE this to begin with. But Zoloft can make it much, much worse. It sure did for me so very many years ago as did many Rx that were "supposed" to calm it down.
Because of the OTOTOXIC nature of many Rx, some patients experience awful inner / middle ear (vestibular) effects.
One thing that can help a bit, in addition to MAGNESIUM is
GINGER. But it has to be more than just a tea, though that's a good place to begin. I must say that this detail has been posted for you many times in recent months and I never see that you have seen it, or mention that GINGER capsules have been tried.
I know this is overwhelming and it's hard to read with any kind of vertigo yet I hope you might see this post and save it to read over time. In bits & pieces.
It took me years to figure out some of the reactions you report.
The serious nature of OTOXICITY really must be considered. There are other things, structural & infection connections that contribute to this but when one is taking any drug / many drugs that are ototoxic, there is simply no "detox" that is going to work until some of the drugs are stopped.
It's dangerous to stop any psychiatric drug cold turkey, of course. And liver support is vital but it's not enough long term.
Some other way to address symptoms / conditions that do not include ototoxic drugs is vital. Save what liver capacity you might still have to help (along with key liver support) for the Rx that are vital to address infections.
Seek out other ways to address secondary concerns - ways that are not toxic to your inner / middle ear balance system.
First, what to call this sensation you describe.
Second: if not yet done, consult a NEUROTOLOGIST, not just an ENT. Some ENT will know about it but it takes a neurotologist to really assess the various matters that cause this IF structural in nature.
Also any ear expert trained in the EPLEY MANEUVER can assess if you might be a candidate for this treatment. You may well be. Only some kinds of vertigo, though, are caused by the tiny "crystals" in the ear when they get "stuck" though for those who have this, this treatment can often fix it.
The Shocking Truth About Prescription Drugs, Medications, Chemicals and Herbals That Can (and Do) Damage Our Ears
By Neil Bauman, Ph.D.
. . . detailed listings of the ear-damaging side effects of 877 drugs, 35 herbals and 148 chemicals (798 pages). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is a post here about GINGER and its help with various kinds of vertigo / balance matters:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: " . . . I do have mepron in the house, maybe I will start it up again. . . ." (end quote)
Please do not. IMO, your body is not stable enough to go on Mepron. And - no anti-babesia drug should ever - ever - be used alone without some other drug or herbal agent that is also clearly anti-babesia / anti-protozoa in nature.
There is hope that this can improve. Again, IMO, and in my experience, though, some of the ototoxic agents on board have to be cleared from your system first, in a gentle manner that will take time, perhaps a couple weeks.
While this may not clear all your vestibular or mood matters, it should help with the chemicals that make all that worse are lessened and then cleared away.
Then you can better tell what's what as far as lyme, babesia.
In the meantime, GINGER capsule, regularly taken 3 - 4 x a day can be a good help to lessen vestibular, pain, and even mood stuff. It's a very nice helper.
I also question as to if the doctor you are seeing is equipped to deal with such complex matters. I know you're in a quandry about this but it seems this doctor or the NP you see are just not up to the kind of standards that I wish they were regarding the complicated nature of this
or up to the task of EXPLAINING what's going on without suggested ototoxic drugs that make it worse.
Hold on, though. Really, this can get better.
in the meantime, rest with your head at a 30% incline. Head / entire torso from hips higher than legs. That's the best position for the inner / middle ear to be at some kind of peace. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
thank you for all this information. The other strange symptom is I feel like I have a balloon in my head going up and down. Such crazy symptoms that are so bothersome all the time.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- These are not "crazy" symptoms. Not at all. Very common with vestibular symptoms, with lyme, babesia, etc.
This is one reason it seems your doctors are not up to the task. That you have not been told such symptoms are very typical for what you are dealing with leaves you in a constant state of wondering.
And be very, very careful about describing any symptom as "crazy" to any doctor who is not a real / true / LL doctor.
Doctors who are not truly LL are very quick to cement that idea of "crazy" when it's all perfectly logical with real medical explanations - even if very awful to experience. It's all logical. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help your body reach some kind of stability with symptom management:
With vestibular symptoms, be sure to avoid gluten, dairy, corn and soy. Anything that causes any kind of bloating, swelling or "sensitivity" can cause fluid retention in the ears.
Peanut butter, even with just organic peanuts will cause my nose to run / stuff up. That's a sign I need to avoid it. Anything that affects sinuses usually also affect the fluid balance in the inner / middle ear system.
With weather changes, too, know that anytime the barometer drops or shoots up, your ears may feel it - and that can also trigger mood changes. It's science / biology / chemistry the way this works.
Still, be sure to get enough SEA SALT in your diet. Some ear doctors say "low salt" but that is not good advice. The right kind of salt is actually important, just do not overdo it to extremes. Same with water. Drink enough but don't drown your body with it, either.
GREEN TEA can also help relieve some ear pressure / swelling.
Capsules are easiest to get a therapeutic dose of Ginger - yet you can buy organic ginger root at the market, wash, dry . . . cut off a little bit and boil in water for about a half hour. Store in fridge and then add more water to sip throughout the day.
Store the remaining clean bit in a small glass jar with a little clean paper towel in the freezer. When you need more, you can use a --- those metal things with holes in them --- to get tiny pieces and boil in more water. It does not take a lot of water since it's still too hot weather. Make it condensed. Dilute just prior to drinking.
Ginger is great added to your food, too.
Don't take too much before bed if it is stimulating to you, though.
Two bottles for about a month's supply so you can work up to 2 caps, 2x day. Start with one cap 3 x day, though. Start with food. Later, it may do well without food but see how it goes. would work well with:
posted
I just got the call from the ENT DOCTOR THAT MY BALANCE TEST WAS COMPLETELY NORMAL. HOW CAN THIS BE WHEN I FEEL LIKE THIS ALL THE TIME?
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ENTs are not neurolotogists. Still, be sure to read through the Tinnitus thread for a better explanation. There are various kinds of balance tests and so many variations in balance issues.
Bottom line, if you experience balance symptoms, you don't need a doctor to tell you that you are experiencing balance symptoms.
Sometimes, there are just no tests that can test all the variables. And a test can only capture what it sets out to assess -- and at a specific point in time.
There are still things to do: consult with a real LL doctor so as to determine a feasible plan to address infections:
work on eliminating ototoxic drugs that are not absolutely required;
liver support; reducing inflammation with diet & key supplements (Ginger is the top one).
The tinnitus thread has more detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
This sounds like one of my friends with Lyme. She had serious balance issues also. She couldn't take very much in abx because of her kidneys.
She treated with herbals. Currently still having balance issues. It is some better, but some days are not so good.
Often she cannot drive - too much stimulation for her brain to handle.
Posts: 2261 | From USA | Registered: Aug 2011
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Well linda, once again you have a lesson in NOT going to these so called specialist and having testing done that says 'normal".
There's nothing normal about this illness. Since you went with all caps.....your stress level has been escalated. Stress is enemy #1.
I hope you find some relief.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
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