penguingirl
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posted
I was hibernating for a good 10 days. I'm still not quite used to my Mino treatment.
My LLMD said to just keep it at 3 a day (2 in the morning and 1 at night). I don't think I will be able to up the dosage ever.
So my issues with this drug are dizziness and balance and sometime head pressure/ear pain.
As Keebler mentioned I need to be taking Ginger capsules and magnesium, which I have been doing.
But boy was it harder to walk outside by the cars, people, than in my small condo from the couch to the bathroom distance!
I can't handle the brightness of the outside and it's not even sunny out today.
I can't handle the noise and I have poor reactionary reflexes.. or whatever that is called. I get very startled easily by sudden movements.
What was strange was I felt that my eye sockets were so sunken in (although I don't look THAT bad) it just felt that I could not quite see things the way I used to?
Also I must be getting yeast now. It's only been 3 weeks on Mino but another 2 weeks prior on Amoxy. But I have been taking Nystatin twice a day. I also started taking a probiotic in the middle of the day.
I'm not really eating any sugar as well. So I don't feel itchiness (down there) but I have a whitish tongue in the mornings now.
Also I can't seem to stop going to the bathroom (for #2 mostly) It's annoying and I don't know when I will have to make a run (or a wobbly drunken walk over to it).
So how do you differentiate between the side effects of this drug vs yeast vs maybe herxing (since I had balance issues prior to taking abx)?
I just want to know how to gauge any progress..
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Keebler
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- You say:
"I can't handle the brightness of the outside and it's not even sunny out today."
"I can't handle the noise and I have poor reactionary reflexes.. or whatever that is called. I get very startled easily by sudden movements."
---------
I've very sorry to hear this. You might still ask to switch to doxycycline.
Get a cane. But using it for balance is totally different than using it for a sprained ankle.
Please do not walk near traffic. At all. Seriously.
I cannot tell you the importance of not only avoiding traffic but even parking lots. Walk in a park that is totally blocked off from traffic and avoid parking lots as much as possible.
You have to be alert for any cars that will be beeping (and as the owners are often far away when they unlock or lock the cars, this can be problematic. You have to watch where each person is looking. You have to be prepared for any car to emit a sharp beep at any time.
Call parks department of your city to find out their leaf blower schedules. In most cities leaf blowers are year round (sadly).
Same with walking on the street or even in a hallway. You have to be prepared for any door to swing open at any moment. So, while walking close to shops or along a wall is helpful in some ways, it can set you up for danger in when a door suddenly takes you off guard.
This is why walking only in a closed off park is best.
Please refer back to links from your previous post about vestibular concerns. I do not want to scare you but, with the startle problem, this could get worse and it could cause serious harm if you are near traffic.
I've been all through that and was injured many times.
VESTIBULAR THERAPY
It is absolutely imperative for your safety to ask your LLMD for referral to a LL PT who is specialized in vestibular rehabilitation. You have to learn some new safety rules.
But, most regular vestibular therapists are not adequately educated about lyme. I suggest finding one who is LL - or at least one who won't discount that your symptoms are beyond what he or she has previously seen. Still, if they don't put you down for lyme, even if not LL, you can learn a few things to save you from a terrible accident.
This is not likely to get better anytime soon (even if you stop mino) - so you need to learn how to protect yourself from injuries that can happen in a an instant with a car horn or the burp of a car alarm opening or closing a door, etc. Leaf blowers also present a clear risk to walking.
In addition to the ginger and magnesium (which should be 1,000 to 2,000 mg - to bowel tolerance) - adrenal support is vital. For details about that, you might consult a LL ND (naturopathic doctor).
But nothing will take the place of also getting some vestibular rehabilitation for the new operating instructions for your body.
Topic: How to find an ILADS-educated LL ND (naturopathic doctor), L.Ac. (acupuncturist), etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc. -
[ 11-16-2010, 02:45 PM: Message edited by: Keebler ]
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Keebler
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- Oh, I just went back over your post and see that you have loose bowels. Your magnesium may be too high, then. But, it could also be a herxheimer reaction from the mino.
You might best go with a topical magnesium cream that will not affect bowels so much. With a startle reaction like you have, you still need magnesium. Shots or an IV might be best.
With taurine or B-12 in the shot, it will not sting so much.
Seriously, considering your reaction to minocycline, you may need a different medicine. The ototoxicity of mino is really getting to you, even with the support measures. I recall from a previous thread of yours that you are also taking liver support, etc.
Glutathione IV may be needed. This is an emergency help to the liver.
Is there another LLMD in your area? A LL ND for adjunct care?
No treatment is easy but if you have such effects from mino, my concern is that you are too much on your own to figure out some of this and the safety of your body is in danger from the startle reactions and balance, etc.
To refer back to links previously posted for you, just clink on to your name and you can see your posting history and go to any of the threads. This is the thread with some of the ear links:
Topic: Is this a herx or side effect of mino? -
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penguingirl
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So this is not yeast then?
I am only taking 200 mg of Magnesium. I'm fearful of taking more since I can't control my bowels.
Luckily I have my boyfriend to do errands or walk with me if I have to go out.
Anyway will doxcycline treat neurological issues? I tried that for two days (back in July) but at least I was just nauseous for an hour or so and then it would pass. I'd take Doxy any day over Mino!!
I tried to email my LLMD about switching drugs but she insists on keeping me on Mino at least for now.
What brand of magnesium cream is best?
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Keebler
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- Regarding systemic candida (yeast infection). Yes, a white tongue is an indicator.
It can become systemic long before showing up vaginally for women. For those in intimate relationships, it's important to be sure that partners also do not have candida as that can be passed in all ways between partners (kissing and sexual).
Anyway, everyone should be talking probiotics.
For yourself, I hope you've been on probiotics. You probably then also need an antifungal agent such as Rx nystatin or Rx diflucan -- or the herb, Olive Leaf Extract (OLE). As with all herbs and other nutritional supplements, never take with antibiotics (abx).
Separate by several hours each direction of the clock:
* Abx
* Probiotics (although a mouth swish can be done often)
* Supplements (unless you know, specifically, that one can go with abx. - most herbs can negate probiotics.)
I also notice that you are avoiding sugar. That is good to help fight candida. However, you need to be sure to get some (preferably gluten-free) whole grains in along with your vegetables.
The severe startle reaction that you are having may indicate that low blood sugar. Be sure to get enough to eat. Light meals every few hours.
Quinoa is a good grain to go along with vegetables. Lentil soups are good, too.
Of course, go back and be sure you are totally avoiding even a trace of aspartame and MSG. Both can increase startle reactions. Google for all the names. Avoid ALL artificial sweeteners and all dyes, additives, etc.
STEVIA (from plant source) is okay to use in moderation. -
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posted
Mino made me quite dizzy. And it's very well-known to cause dizziness, particularly in women.
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penguingirl
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Yes I'm on Nystatin which I take with my abx. My LLMD said I can take it together.
I take a probiotic in the middle of the day.
Then I take those supplements.
Then another Abx at night with more Nystatin.
I just wondered if this dizziness could be partially yeast and not just the Mino.
If it's yeast then I'm doomed!
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Keebler
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- The degree of vestibular dysfunction that you report is from the minocycline.
However, your liver may be overtaxed, too. WIth IV glutathione, you may be able to continue but you need some serious adjustment to help your chances for personal safety when walking.
Still, regarding yeast, yes that can contribute to the overall herx but not to the degree of vestibular symptoms that you have.
One probiotic a day is not enough, even with nystatin (which may need to be taken away from the abx - but I'm not all that familiar with nystatin.) If you have thrush in your mouth (white mouth), you need more to battle candida.
OLE worked wondered for me but that could also cause too much of a herx for you right now with the mino reactions. If you do take OLE, start very slowly.
I wish you could get a LL ND to help you manage all this. I really think you need a different Rx. Be aware though, that azithromycin might also cause you vestibular problems and that Biaxin could. Doxy is the least problematic to try until this settles down (which could take a while even after stopping mino). -
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Keebler
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- ALL EARS. Specifically for LYME patients - lots of details about ears and what can help:
Page 363: Minocycline causes temporary vestibular damage in 30 to 90% of those taking it. (244)
You can develop symptoms of ototoxicity after only one or two doses. These symptoms normally disappear a day or two after you stop taking this drug. (245)
Dizziness, tinnitus and vertigo are more common in women than in men (BNF).
================================
If you are taking any other ototoxic drugs, by dropping them (if non-essential), you may better be able to tolerate mino. Be aware that aspirin is also ototoxic.
Acetaminophen is hard on the liver and that can stress the ears. Ibuprofen can be hard on the kidneys and that can also stress the ears.
As many sleep and pain meds are toxic and hard on the liver and kidneys, here are some suggestions for sleep support that can safely nourish & calm the body: ---------------
Topic: Looking for long term pain management -
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penguingirl
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Ok thanks for the advice!
I hate Biaxin - I took it for pneumonia years ago and got the worse yeast infection.. and that was just a week or so.. so forget that.
If Doxy will be less dizzing then that is the drug I should try to switch to.
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Keebler
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- Remember, even if you switch, you will still need to get some vestibular training.
Any treatment can stress the ears and, given the degree of ear stress that you have, it's really important to learn safety rules. The inner ear may be a bit shaky even on doxy (which has had some reports of ear stress but just less than mino).
There is no easy way to fight lyme. It's going to take a while so I do hope you can get a LL ND to guide liver support, too.
. . . Sarah is a woman in mid-life with two grown children. After a disabling bout with Lyme disease, she felt that her feet ``refused to follow orders.''
Her gait was disturbed and simple tasks became hazardous. One evening she broke her ankle as she walked across her bedroom! Now her determination to stay mobile was burdened by more pain and weakness.
At this point, Sarah's massage therapist sent her to me for Functional Integration lessons. She made immediate and rapid progress; her feet found their way; and her gait became stable and fluid.
``In the aftermath of Lyme disease, Feldenkrais� lessons contributed to my entire sense of well-being. The movements improved my fine motor skills. Also, because I was walking all wrong, it tired me out.
I knew I was walking incorrectly, but I didn't know how to correct the problem--now that I'm walking better, I have more stamina,'' she explains. . . . -
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kgg
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posted
It is my understanding that Minocycline is hard to take. It is good for neuro lyme though. I know of one LLMD who with some of his patients starts with just one mino a week. That is the way I am going to start my son. So if this was me, I would ask your doc if you could back down on the dose or pulse it until you get used to it. ie: every other day. every two days. three days on, two off. Something so you get a break and your body can recover.
I have to agree with Keebler on the probiotic. What is the dose of your probiotic? My son and I take two capsules that equal about 35 billion good bacteria. And when we are on a lot of antibiotics we take more.
The white tongue in the morning could be just dry mouth. And the loose stools could be from the Magnesium.. I can't tolerate oral magnesium.
Hope you figure out what's what soon. And that you feel better too! Karen
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Keebler
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- kgg has an excellent idea regarding the pulsing.
After you are more stable, I wonder if it would be possible to take one mino one day a week and doxy on other days. Has anyone done that?
You mentioned that you were working from home for a while. Can you continue to do that for a month or two? If not, when you would travel into work, can you have someone accompany you on the train?
If so, they would need to be instructed in how to help you avoid a fall. They would need to learn the ways your body might react to startles, etc. They need to be trained by a LL PT, etc.. It's not as easy as one might think.
And, please, before you travel on the train or the trolley (do they still call it that in Boston?), be aware that you could fall at any time. I don't want to scare you but, given the symptoms that you have, sudden falls could happen. You need to have a safety zone around you at all times.
Do not get to close to the tracks, the door, etc. This is why I am shouting that you need to give the utmost attention to getting into vestibular therapy ASAP. Maybe even a therapist could come to you. That would be safest.
See if there is a vestibular support group near you. Contact the leader. Usually, those are at the larger medical centers through their community education offices.
You might also consider renting a wheelchair for travel safety. You would not have to use it at all times, but when you are in a busy environment, it could save your life. It could also save you from injury.
You should also be wearing an emergency bracelet of some type. Keep your valuables close to you so that if there is a fall, your purse does not disappear under a car or into some quick thief's hands.
Wear only sensible shoes, of course. No heels. The soles should be wider than the shoe itself for stability. -
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penguingirl
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posted
Yes I never thought about pulsing. Well I am so new to all this lyme stuff - just got officially diagnosed on 10/15 and found a LLMD on 10/28.
I just want to get as much lyme killed as soon as possible so I figured if I can tolerate wobbling to my bathroom and back while at home, that is fine with me.
It's just going outside that is risky but now I learned NOT to do it alone. My boyfriend works from home most of the week, so if I need something out, he can get it or I can walk with him slowly.
I do not commute to work anymore. Yes, it's the trolley or the "T." I told my boss that I will work from home until I feel better. I did not give them a timeline. Of course I'm in finance and this is the busiest time of the year. Go figure!
I only fell once luckily in my bathroom into my tub but sat down so didn't hit my head.
I'm not going outside anywhere alone for a long time!
I think the next venture out will be turkey day and we will be in the car.
Is Mino the only oral abx for neuro lyme? My LLMD says that if the Mino does not work, I am serious enough to go onto IV.
I don't want IV!!
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Keebler
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- Priority for today: set up safety training
Even if you are not near South Bay, you might call him for suggestions of who is closest to you. Since lyme is unique, be sure to ask if he knows of someone who is lyme literate.
You need to know that you may not have control over your body if the inner ear is too stimulated. You can freeze (called ataxia). That's one reason to learn how to keep yourself in a safety zone in case that happens.
SBVSG presents A Matter of Balance, an award-winning program developed by Boston University designed to manage falls, increase activity levels, and maintain independence among older adults. A Matter of Balance Participants Learn to:
View Falls as Controllable
[Keebler's note: Although, with lyme & with inner ear dysfunction, falls may not be always be preventable. But we can learn the difference and the cues and clues to help.]
Make Changes to Reduce Fall Risks at Home
Set Goals to Increase Activity
Exercise to Increase Strength & Balance
For more information on joining the next scheduled workshops, contact Al Mofrad at (408) 256-2459 or by email at: [email protected] -
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penguingirl
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posted
I sent him an email now. I hope there is someone lyme literate close by.
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Keebler
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posted
- Ohhh, I just came back to edit the post above. I'm so glad to see that you sent a note to that group leader.
If you don't hear back, be sure to call him or hunt down the main number for that group at BU. Sometimes these web links can be out of date.
Be sure to also contact the Boston Lyme support groups for suggestions.
I guarantee this: after you learn what you need to get you through lyme treatment, you will have learned so much will that help you in so many areas, beyond lyme.
The very best of luck to you as you find your way.
Take care, now. -
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Regarding vestibular therapy, you might find one if you can find a Neurotologist in your area.
They ( NeuroT's) often refer patients for this therapy since so many of their patients suffer with dizziness and vertigo.
If you can't find one of those ( very specialized and not that many), then call a rehab center where they work with stroke patients.
There are sites on line too that give exercises you can work on at home.
It can be as simple as standing beside a wall on one leg and holding it for a few seconds then switching to the other leg.
I use a swiss ball for many of my balance exercises.
If I am standing in line at the grocery, I practice by balancing on one leg and just barely holding the other foot off the ground ( so I don't look totally crazy
I have 2 big dogs and looking back, they are what's kept me going every day. I MUST get outside, I must walk them and there have been days when it's a really slow walk.
I have had too many falls while out and now the residual effects like a shredded rotator cuff plus many other additional aches from the trauma of falling.
To protect your eyes which interact with your ears to keep you balanced, try this:
Wear a large brimmed hat and sunglasses to help deflect any additional stimulus.
You can pick up soft foam ear plugs to protect your ears from loud noises.
They even have some that are on a cord so when you don't need them, they dangle from behind your neck and don't get lost.
If you don't challenge your vestibular system if will become weak. Make it work for you everyday, somehow. That's whats nice about the swiss ball, I am already close to the floor, so at worse, I will roll off and not do any damage.
I also have a trainer who has worked with me for a few months. We concentrate on balance but also in conditioning as I had lost much muscle from inactivity.
Our muscles and a strong core will help us remain upright. You have 3 parts to your vestibular system: Ears, Eyes and feet.
Every time your heart beats, your eyes adjust to keep you balanced. It's a very big job, keeping the balance which is why you must work your system to make it stronger.
Yes, it takes time and patience but you must fight to keep yours working in peek performance.
Magnesium: It comes in many forms and dosages. I was severely deficient and needed IV's for a couple of weeks to build up before I could start oral supplementation.
The IV is called a Myer's Cocktail. It does sting but that's the magnesium and it's all over quickly. At that time, I had horrible headaches. As soon as I took an IV, the headache immediately went away, wonderful side effect!
Actually, it's not a side effect at all, it's another treatment for migraines.
Magnesium Glycinate is easier on the system and I used it for years 800mg every day. Now I take magnesium Malate, still 800mg per day.
You could also take a bath with Epsom salts at night before bed, your skin is your biggest organ and will absorb magnesium. This also helps you sleep and we all need more of that as we can't heal with poor sleep. Sleep cycles are when the body does most of the repair.
While you are in treatment, you probably should pay attention to your liver since it has to process all your normal/daily stuff like food but now it will have a higher toxin load and the chemicals from the drugs you are taking.
Your liver needs support! Milk Thistle and Glutathione. Taking it as a oral supplement might not be the best delivery system. It was recommended for me to take it in an inhaled form using a nebulizer...just something to look into.
I take a liver detox supplement everyday and my liver is showing much improvement plus I am eliminating more toxins.
I picked up a swiss ball at Marshall"s for 10.00, just an FYI.
Keep a note on your calendar of what you accomplished each day. Visuals are powerful reinforcements. Remind yourself "I CAN" and then DO whatever, but do something. It could be that you took out the trash or you walked outside in your yard but do something everyday. Some days are hard, so you do less. I just don't want you to fall into becoming your illness.
You are still YOU, don't forget that.
It's very easy to slip down the slippery slope of chronic illness and end up in depression.
Best wishes on your journey!
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Keebler
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- About ear plugs, be very careful when walking. For some inner ear patients, some ear plugs increase dizziness and vertigo - therefore can make walking more dangerous. It has to do with pressure but also in that it creates more confusion between your senses and your brain.
I have tried over and over with many styles and I just cannot walk while wearing ear plugs. I loose all sense of where my feet are and reaction time is erratic.
There are some that have a tiny air vent in them. Those are best. I good ENT or audiologist can suggest what will best work for you. There are many options.
You might also consider ear muffs. I find those safer and more effective in some ways, but not others.
As for the balance ball, be sure to hold onto something stable and just go for even sitting, raising one foot at a time, holding that. Do NOT bounce.
Do NOT bounce. This will irritate the inflamed nerves in your ears.
Although gentle bouncing can help move lymph tissue and be helpful for detox, this is not the time for you to bounce.
If you do not have a PT / balance ball now, I would NOT buy a new one. The vinyl off-gas effect can make you worse. See if a friend has an old one you can borrow. Keep it out of sunlight and away from the heater. Keep out of your bedroom as even old vinyl will still off-gas to a degree.
There are times when the inner ear does need total rest at a 30 degree angle with head/upper torso elevated. Sometimes, any activity is just too much. Honor what you body needs.
At this point, training should focus on learning skills for safely navigating dangerous situations. Then, focus on what muscles systems need to be strengthened.
As long as there is a disruption to the inner ear, some kinds of vestibular rehab simply will not work so don't knock yourself out (literally).
A LL neurotologist &/or a LL vestibular rehab therapist should be able to help you distinguish good rehab training from what is a waste of time or dangerous, or too exhausting, right now. This can differ for every patient.
The main tinnitus thread has detail on different kinds of ear plugs and muffs - and on some balance mats, Qi Gong, etc.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
[ 11-18-2010, 03:08 PM: Message edited by: Keebler ]
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penguingirl
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Thanks Keebler!
No I don't have a balance ball now - I gave mine away awhile ago. I do have a small hard ball that is weighted (like 8 lbs or so?)
I'll ask my LLMD if she knows a LL vestibular therapist. Also need to join a Boston lyme support group soon.
I have not attempted to work out at all with the exception of lying on my couch and doing bicycle motions with my legs to get the circulation going.
The thought of "stabilizing" against a wall with a ball right now makes me nervous.
Taking a shower makes me nervous a lot because I don't know when I'm going to slip but I try to stay planted on my feet. I will have to get those sticky mat thingsy for the bottom of the tub as I do not have a handle bar in my shower wall.
I do need to keep my core strength up though since I know the core is so vital but not sure the best way to do core exercises without moving the head and I have messed up shoulders now (not sure if it is from lyme or something I did in my sleep)..
So plank position is hard too.
Thanks - I'll save the tinnitus thread for my reference now..
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Keebler
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- Your senses are alerting you: no stand-up showers. But baths can be slippery, too.
With your sensitivity to smells, it may be a challenge to find a good tub mat. I even tried to get shower shoes but the smell of the latex made me so sick, I had to put them outside of my apt. door until UPS came to pick up.
If you do not have a hand held shower, I suggest getting one. And a shower chair.
Getting up and down from the bath tub is very dangerous with an inner ear disorder and also with the kind of hand and wrist pain that comes with lyme.
Some kinds of adhesive tub decals smell less than others. Same with some of the mats. But just testing these out could make you feel sick for the whole rest of day. And when they get hot, if they smell when dry, they will smell worse with hot and wet.
Do any of your friends have a good bath mat they could wash up and give to you - and you could buy them a new one if they are not sensitive to odors?
There are some grab bars that attach to the side of the tub without hardware. I studied some options but did not feel comfortable with suction cups. Those that hug the tub wall and tighten may work.
If at all possible, install a grab bar into the studs of the wall as close to your tub as possible.
If you rent, you cannot expect the manager to do this but you may ask. As it's required for a disability, they have to allow you to do this but it's at your own cost and must be done well.
Grabbing a towel rack usually just pulls it out of the wall. I've done that a few times.
A search at Google for a "shower chair" will give you some options. The rubber tips on the shower chair legs should not be too bad, they just seem made of a different formula than the mats. You really need the rubber tips on the chair legs.
But, oh, the plastic can smell, too. I forgot about that. So, again, does anyone you know have one you could borrow? A very sturdy lawn chair could work, but be sure to think through all the ways it could fold up on you in the shower.
There is a lot to consider for safety - I wish you the best of luck. Hopefully, you have some friends who can hunt down some things you need. -
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Keebler
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- ISOMETRIC EXERCISES used to be the rage a couple decades ago. This kind of cross-search through Google may help: "Isometric exercises" vestibular
PILATES - some moves may be able to keep your head and neck still while still working key muscle groups.
Qi Gong is also excellent. Much more fun and has many benefits. The "Soaring Crane" style is one of the more healing styles of Qi Gong (Chi Gong).
Qi Gong is similar to Tai Chi. While I like the dance like moves of Tai Chi, it requires more turning of the head and sudden changes of visual locking - I can't do that in a group - only in my own living room with nothing else moving around me.
I suggest that vestibular patients first learn Qi Gong and then a transition to Tai Chi is much easier. -
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