-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96233 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've had this multiplied by, oh, a million.
Sounds like, with you, Myoclonic "activity" that borders on the lower end of the seizure spectrum [but don't be put off by that term - lots of folk are at various places on the "spectrum" at times] and it's no fun at all. VERY common with lyme.
Hyperacusis also sounds like it's at work here.
I suggest being sure your LLMD knows all about this. Things that help:
MAGNESIUM could solve this for you - it could be that simple. Start here.
ADRENAL SUPPORT also vital.
LIVER SUPPORT, also essential.
Check all supplements and assess diet for ingredients that may be over-stimulating (to you, to those with lyme). Detail:
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory. Additional detail in next set.
First, that crying uncontrollably can also be activity considered into the seizure spectrum on the tail of what happened. But also, believe, me I KNOW that kind of ear / head pain from even slight sounds - but feedback is not slight.
That kind of pain would trigger intense crying, I cannot describe how intense this kind of pain is, so do not think less of yourself for that. The crying was a NEUROLOGICAL reaction, all part of this.
Exactly - that others are not even bothered but sounds that cause an ice pick to go through my ears. THIS part of it is very, very disturbing to me. Twilight zone, but it's real, and it has medical explanations. See the TINNITUS thread.
Over the years, I have had so many similar experiences (and beyond) and I look around and no one is even bothered at all. They just cannot relate.
At this point, after reading your full post now, IMO you MUST, MUST avoid public places right now. This is for your own safety as well as for others.
Your LLMD must know about this, too. Please call them on Monday morning. Make a point of it.
Again, this is VERY common with lyme, Really. I've studied this for years so I hope what I've found can help you.
Do you HAVE a LLMD? Priority #1
Are you taking antibiotics? Other Rx? No need to list but know that some can DO this to you, via their ototoxicity properties. The tinnitus thread has more detail.
I must stop now. I am so sorry to hear about this. I sincerely hope you will take my strongest advice to stay out of public places right now. There are so many reasons I suggest this but my hands are just not able to go on. And I'm rather toast, too.
Oh, best to be gluten free, too. GLUTEN can do this, on top of everything else. -
[ 12-13-2014, 04:26 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
- One more cloud of thought.
Is there a reason you single space your posts? Do you need replies to be single spaced?
In addition to HAVING SOMEONE ELSE GO and get for you MAGNESIUM - TODAY, as it will take you time to sort through all the various links,
FISH OIL - the best quality
Consider any new Rx you are taking. And the ones you've been on a while, too. Sleep & mood drugs can cause myoclonic symptoms, for me, they sure did, anyway.
And, if you have a cell phone, do not use it. Put it as far away from you in the house as you can. Same with others' cell phones / chargers.
LIGHT BULBS - if you have any kind of fluorescent bulbs, do not use them. Incandescents or a good brand of LED. CREE WARM light works for me - but don't use a dimmer switch.
I tend to be task oriented but do know that you have my sincere best wishes and total understanding. You must take care of yourself in ways suggested. I feel very strongly about this and it should help, really. The sooner you can stop the exposures, that is a good thing.
You have to strengthen the seizure threshold and reduce kindling.
This can work out, really, many have gotten better and this part just fades away then.
However, lyme / other TBD MUST be adequately addressed. That is absolutely essential.
Along with support methods and whatever you have to do physically to take care of yourself, no matter what others experience, this is very, very real and very, very important to know that.
Hope your LLMD on Monday can help. -
[ 12-13-2014, 04:41 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
- The head pain afterward is very typical after seizure activity - &/or the muscle trauma that happens with such myoclonic activity.
ARNICA homeopathic 200c immediately following helps me prevent that payback headache and
lying FLAT down for at least 30 minutes as soon as you can, in dark quiet room (maybe soft music but nothing too energizing for the rest of the day).
I hesitate saying this but driving really should not be tried for now. At the way you explain it, this could turn into reactions that could impair safety. Sorry. But if you can prevent this from going to that next level, it's a good thing.
If it goes to the next level, it can be a much longer time to emerge.
Bose noise cancellation headphones can be a bit of a help but not the perfect solution by any means in all situations. See more about ear plugs and muffs in the Tinnitus thread. You will need something to protect yourself.
Take care. -
[ 12-13-2014, 04:43 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
- Thinking about your kids and how this is Christmas time. That they went to see Santa suggests they are fairly young.
Explaining this to them can be tricky at best, scary perhaps, and I'm sure you still want them to be just as spontaneous and expressive as little kids should be.
Still, I hope you find some ways to explain and some kind of ground rules so they don't have to scrape you off the ceiling.
An "inner ear support group" in your area may have suggestions on quieter places for families with young children to go right now.
So might the children's autistic support groups.
Bells & whistles on Christmas gifts - be careful with anything like that. It can be more traumatic to see mom crumble in pain or have a seizure as a result of the intensity of pain from a toy that makes noise than to just not have the toy or to have that toy altered.
Do what YOU need to do to be safe. But try to be stealth about it so you don't have to announce every decision you make as you hide or dismantle sound features on certain toys.
Having your husband and other adults in the loop is important but try to keep the kids from absorbing too many of the things you have to do. Just have your team on the look out for you.
The OVEN - as it comes up to temperature and beeps, that can be a strong noise.
MICROWAVE, also be mindful.
DRYER, etc. ditto
DOOR BELLS, KNOCKER - you can wrap the inside of some door bells (inside box) . . . and on a door knocker, just under the part where it strikes, put some kind of tape that will stick. SUGRU, a putty might work.
CAMERA FLASHES - you have not mentioned light matters that can often go along for the ride. Just to be safe, at your family gathering, announce for everyone's comfort that anyone taking a photo let everyone else know with enough time to take a seat, etc.
It's best not to push the flash. Close your eyes in advance if you are not in the photo. If you are, sit down.
And hugs galore to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you for all the info!! Very helpful. I know my LLMD knows about my hyper-startle and what they call subcortical seizures I was having in sleep.
I will call them Monday. I am also Herxing right now because yesterday was my day I take all abx as I pulse them. So Flagyl is likely increasing symptoms. I am twitching a lot right now too...
The crying was a neurological response just seconds after the stimulus. I rarely cry so this was an unusual event.
I am taking NeuroMag and ordered ReMag today.
I have some liposomal glutathione around..maybe worth a try too.
I have been having an increasing amount of an inner ear popping sounds too, so maybe there is an inner ear component...
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to keep adding to this. Were it not 12 days before Christmas . . . in which YOUR 12 days could be rather interesting I'd probably let this go sooner. But I've just had so many flashbacks - and some things to help come to mind so that your experience may be more delightful than not.
If you go to any kind of religious services, personally, I'd advise NOT going at all. Forget sentiment, emotions, wishes, it really would be best to not go.
Still, if you are determined, there are some things to do beforehand.
First, look at the website for the Hyperacusis Network.
Get some good ear protection (but that could keep you from communicating with others around you).
Know that cotton balls and tissue will not help. It just won't. Big surprise to me and later when I read why, it made sense.
Still, do learn how to quickly and subtly put a finger over your ear "tab" and hold your ears closed.
Also know even with the best ear protection, sound can still travel into our ears through our nose . . . and vibrations, especially, through whole body and bones, up to our ears.
If you do go to some kind of service or program:
Call and talk directly with the person in charge of the music about:
microphones, where speakers are placed
bells, whistles, gongs, cymbals, sheep baaahing or any sound effects.
Applause, oh, my. That can be a blast in not a good way. Some churches "do" that for special kids' choirs.
FLASHES - oh, they can be everywhere. and just like SCENTS, our whole sensory system can be overwhelmed with too much. Just be mindful and excuse yourself when you need to.
For any holiday gathering, this may be hard with kids but YOU should sit in the very back, right by a door, and able to just bolt if you need to - or back and forth away from the main space to a smaller quieter space. Can friends, relatives do these things with your kids so they don't even really notice that you are in the shadows.
Do not wear HIGH HEELS or walk down the center of any stairways. Plan in advance, exactly where you will be walking - so that if there might be a sudden honk or buzz you have a hand rail or you won't fall and squash some little kids.
PARKING LOTS - avoid them. Have who ever is driving drop you off, you scurry in away from cars and the reverse when you leave.
CAR ALARM "burps" with the locking systems can be very sharp. In light of what happened at the café this morning, this kind of sound could trigger a flight to the moon.
When you are walking out and about and near cars, do wear the best ear protection you can (but also keep in mind how much you will have to hear to be there for you kids if they need you to grab them right away).
KEEP YOUR DISTANCE As a pedestrian, do not walk right up to the edge of a crosswalk and wait there for the "walk" light -- stay back a ways so that if you are startled, you won't fly into the street. [I learned this the hard way.]
same for train platforms. Stay back until you can enter the train, bus, spaceship, etc.
Do not walk and carry a child until you are in you quiet home and sure nothing is going to beep or buzz.
I am sorry to post what may seem very scary (well, I know it does) . . . I don't want you to think that this is necessary going to go to the next level but it really sounds like it's already at a pretty important "level" now as it is.
It is important to honor this place where you are now and figure out how to safely navigate it on your way out of it.
For a long time, I tried to deny . . . tried to slip by, hoping something would not happen but so often, I had major reactions to sudden sounds and it was very traumatic for me - and others.
The experience you had this morning at the restaurant in not an early warning sign. It is the sign that you have entered a new space. And the reactions could be stronger from here on, it's important to know that, for your safety - and sanity.
a few other thoughts that can save your bacon:
GLUTEN. If you are gluten free (important) this is no time of the year to let up on that. And so many gluten free choices abound. Gluten can clearly trigger seizures for me, but it can be delayed by 3 days.
Oh, how I found that out(over and over) leads me to the next piece of advice: Do not trust pot luck dishes when your friends tell you what they put in it.
99% of the time, they don't even know there was gluten in one of the ingredients until you call later and ask for their recipe because you wondered if you could "figure out that delicious twist"
How to think about all this? Well, good luck there. Hope you've got some humor renewal system.
If you had a sprained ankle, you would (or should) stay off of it until it healed. Your ears are "sprained" in a way now and require similar care.
I hope your family can enjoy a wonderful holiday season (remember, we're just getting this season kicked off . . .) and that you have some great memories and good fun all through it, even if the planning has taken on a whole new dimension. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you so much! Good tip on the gluten too... I am usually SO strict and I have slipped a couple of times recently..
I am keeping my fingers crossed that this is a herx and will get better as I go into my next 2 off weeks but then I begin biofilm treatment so.....
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hope so, too. In addition to "keeping your fingers crossed" though, be sure to check all drugs you take in regard to ototoxicity.
Best to get the newer edition, Bauman's 3rd edition "Ototoxic Drugs" as not all are posted on the web but there are some links and searches you can do - they just might miss some.
Ototoxic detail is in the Tinnitus / Hyperacusis thread.
And your liver support really needs to be evaluated. Even if this is a herx, it's important that you have some clue as to the major factors that when awry - so that the next herx does not blast you to the moon.
If everyone else with you, around you had also been at least irritated by the feedback / experience at the café today, I would not be quite as concerned if it just bothered them but tortured you.
But that it tortured you and did not even phase them tells me much more could be going on.
If you have any more situations as today, you might also want to be assessed for SCD, superior canal dehiscence - detail also in the main tinnitus / hyperacusis thread.
I'm glad you have a couple weeks ahead that look a little easier, though. Enjoy the warmth of the season with people you love. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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