momindeep
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Wondering how Lyme rage plays out for those of you that experience it?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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TF
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Ha! I experienced it once years ago when I had lyme.
I was standing at the curb waiting to cross and a fellow drove up and asked me for some directions. The next thing I knew, I was yelling at him and he sped off!
I wondered what happened! It was nutty! So, it is going crazy yelling for no good reason.
As far as I know, that was the only time such a thing happened. But, maybe my husband would have a different opinion!
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Keebler
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- As with "herxheimer" I think the term can be overused or used in a very different way than many of us might otherwise think of "rage"
I don't think I've ever had "rage" as in hatred and vile directed at someone (my definition of rage, I suppose) but there have been a few times -- looking back I better understood -- that the utmost in adrenal exhaustion and neurological fluster of great degree might have had some similarities.
With me, it's mostly involved hits of sound that were off the charts and going outside of a hair salon demanding the leaf blowers to stop - stop now - right now.
I was amazed they'd be right up by the windows to begin with but others seemed not to have the gumption to stand up for themselves and not be abused. Seems, in retrospect, I was the only one bothered. No one else even really registered being hurt by it.
Another time, same salon (really just a Great Clips in a mall) I waited til the end of day for less traffic. Only one in the place and yet the two operators there would not turn off the radio when I requested nicely after 3 times. I had explained the ear pain and the seizure triggers but they just laughed at me and told me that I could not tell them what to do in their space.
I got right up, ripped off the cape & stormed out after telling them to "**** off". I did feel fury, to be clear. I was furious even if that came from just not being able to be in the world at all to do something as basic as get my hair cut.
Fortunately, my ride was waiting for me right outside.
Last time ever to try to get my hair cut (since I never go out my own styling efforts are adequate).
That was many years ago now but I still think I'd have the same reactions were I put in same situation. My neurons and my ears, my adrenals just literally burn out on the spot.
Good luck with whatever particulars you deal with. -
[ 03-13-2016, 07:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- TF,
Your reaction was not at all for no good reason. You were likely shocked and maybe shaken by the upset in what your brain expected of the situation.
Vestibular upset may have also been involved with some dizzying of sorts to be stopped in a very busy environment, noisy, smelly exhaust & traffic can make me undone in a second.
It really makes perfect sense, all things considered.
When I was living downtown and used a cane (before I knew about lyme) I was waiting at a crosswalk and some slight noise triggered me to toss my cane right at a car - it bounced off and hit someone next to me. She was furious with me.
But my tossing the cane at the car was not something I had any control over. My arm just jerked. So, as nerves in the arm can fly, I think so can nerves in the speech centers to mouth off at the most inopportune times.
I think it's actually on the seizure spectrum. With a seizure, ANY function of the body can be over excited and act out without the will of the person. ANY function. I do see a connection with speech and body mechanics when the environment or situation is just too flustering. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- What can help in understand and as support for when we feel overwhelmed.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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momindeep
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posted
So it is involuntary then?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Keebler
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- Well, it can be. It would depend upon the character of the person, their intent, the situation, etc. For myself - and therefore I assume maybe also with those with lyme, etc. that it would be involuntary or at least unintentional.
Most of us who have these experiences are not bitter, angry or vengeful individuals. We are usually flustered and embarrassed and feel totally run over by the bus by such things. To me, that is not even rage but something else very different.
The term, IMO, is the wrong term (and, yeah, I know even LLMDs use it) but I don't know what other term would work in one work to describe a sudden outburst as seen by the eyes of those who have no clue to the factors of lyme, etc.
"Outburst" would work, I suppose. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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momindeep
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So, seething for a couple days would not fit this scenario?...not being able to get over something.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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TF
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posted
When the man stopped and asked me for directions, I was happy to help and started giving him directions. I believe he said something perhaps questioning or disagreeing with or not understanding me, and that is when I started yelling which was totally inappropriate.
It scared the guy because it was so inappropriate so he took off. Then, I realized that I acted crazy for no good reason. I was very puzzled by how I acted. Then, I figured out that that was probably an example of lyme rage.
I was really puzzled by how I behaved. It made no sense, believe me. So, I guess you could say that something very, very small just caused me to totally lose my temper, which was not normal for me at all. I really wanted to help this person but I ended up yelling at them! I was really taken by surprise! Then, I started laughing at how the guy took off and I thought "He probably thought he better get away from this crazy woman."
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
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- The trigger in that instance, I think, and the kind of thing that send my brain and emotions into a tailspin, you say it was a surprise and that means shock to many of us:
"he said something perhaps questioning or disagreeing with or not understanding me, . . ."
The endocrine dysfunction is very much involved, I think and all bets are off. Trouble saying what we want to say under the best of circumstances is hard with lyme. When our boat is tilted, it gets even more unpredictable. -
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Tincup
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Hey momindeep,
You said.. "So it is involuntary then?"
Mine was. Totally. I don't even remember doing it when it was happening, and didn't realize I'd done it when it was over.
Just suddenly one day I found myself screaming like I was totally nuts, when I never screamed before. I wouldn't even yell loudly to call the dog in for supper if he was out around the farm somewhere. So totally unlike me.
And very scary once I snapped that day (like waking up) and realized what I was doing. I was horrified about it.
Momindeep said.. "not being able to get over something."
I was just speaking to a LLMD the other day about psych situations with Lyme patients and I remember it now because I didn't know this could be the case.
According to what they said, your description COULD be a form of OCD.
They mentioned this kind of OCD would more often be associated with Bartonella.
Don't know if that helps or not, just thought I'd mention it.
Tincup
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posted
If it helps, it was 20 or more years ago when this happened and thankfully it is no longer happening. Antibiotics cleared up the brain enough so it never happened again.
momindeep
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posted
Thank you so much for your answers and examples...I am just trying to figure out what could be the trouble with my loved one and trying to understand better so I can keep my cool and remain level.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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TF
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Keebler, I was taken by surprise by my yelling. It was like I woke up yelling.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
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- TF,
Yeah, that's what I'm talking about. Taken so by surprise - that some kind of shock sets it off and then so shocked by the sudden knee jerk response. This sort of thing is why I think the neuro-endocrine system is so involved. that fight for flight really revs up. It's just that with lyme, etc. it takes so very little to trigger my shock reaction. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- momindeep,
I did not see your poster earlier where you ask:
"So, seething for a couple days would not fit this scenario?...not being able to get over something. " (end quote)
Tincup's note about BARTONELLA - be sure to consider that.
Well, of course for each of us or for anyone with lyme, TBD who has any kind of sudden reactions to stressors . . . we might all experience that differently. I do not think what you are taking about is at all what I've experienced or how I'm interpreting / defining it.
But I could be talking about something totally different from the "rage" that LLMDs know about.
I have read about the tendency to ruminate and obsess as infection connected.
Others might offer some responses, still the bottom line is that whoever you are inquiring for / about / concerning . . . their LL doctor would be the best to consult.
There are various other issues with the brain &/or neuro-endocrine systems that can cause all kinds of new / different reactions to stressors, too.
Any kind of swelling, inflammation, infection has got to make it more likely.
I assume this behavior pattern is new to the individual and out of their character so that's what the doctor needs to know.
As for the "rage" of lyme / TBD, my idea of it is that it's not really at all a behavior pattern but just a one-off now and then that comes as a shock in response to a particular stressful instance that triggers a rush. Just my thoughts, though.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- If I recall correctly, there are some parts of this paper that speak to this topic:
- explores the neuro-psychiatric and neuro-psychological ramifications of lyme and other tick-borne / chronic stealth infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Check all medications. Some Rx can have what you describe as a reaction / side-effect.
Think back to possible bumps on the head - even slight bumps.
And, in Chinese medicine, an "angry, hot liver" might also make it harder to let go of irritation / anger.
Liver support may be of help, there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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momindeep
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Thank you Keebler...I will check out and consider all these things. It is a hard gig for all of you that have this illness for sure.
I just want to be the best caregiver/supporter that I can be...and at the same time keeping my head above water.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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momindeep
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Super hard when the anger is aimed directly at me.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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steve1906
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In my worst days (years back), when my neurological disorder from Lyme/co's were at their worst I had this problem; (Rage!!!!).
I would yell and scream at everyone, wife, kids, family members, anyone in my path. It lasted about 9-months to a year. Keep in mind I’m a loving person, and I love my family.
I even had a fistfight with one of my sons, thank God he was young, strong & tall or this could have put me in jail for a very long time, if not life.
He could have done a lot of damage to me, but he didn’t. He was the only one that understood lyme disease and it’s symptoms, no one else has ever taken the time to educate them self’s, sad.
He knew I was very sick and he didn’t what to take advantage of my rage & craziness. I'm not proud of any of this (it’s not who I am), but I just couldn’t control myself.
momindeep, I’m sorry you have to go through this, I understand completely.
If it is the Lyme causing these outbursts towards you, I can only tell you he feels remorse but just can’t control it, honestly.
The one thing that would have helped me (I think), is support from my wife, didn’t have any.
So, the one person that understood these diseases, I ended up fighting with; that’s rage!!!
I hope things improve very soon for you and others, neurological disorder was always my worst symptom, I didn’t care if I lived or died, 24/7.
Take care of yourself, Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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momindeep
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Okay, Steve...your post explains a lot. I think that he has been trying really really hard to control himself and it just came out in the weirdest, scary, way.
My daughter, when she was ill, had issues that were extremely difficult for her and me...but this is somehow different because I am not dealing with an adolescent/teenager/young adult and I have been struggling to give him a pass on this.
I have been showing grace, tho...and after reading these posts it solidifies for me what I suspected.
I feel so bad for everyone.
He is coming around today and perhaps I handled it right.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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randibear
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I had it once really bad. we were doing taxes and I was giving him the information. well he kept questioning me, why this why that...why why why...I kept repeating the numbers.
finally I just lost it. a completely irrational rage took over. not mad,,I mean violent rage. I wass shaking I was so angry. I really believe I could have hurt him.
I got up and left the room. I had to get away. it was scary.
hasn't happened since tho I've had plenty of reasons...lol
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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- momindeep,
While the neurological issues that get all bounced around with the dysfunctions of other body functions might not be predictable, you have some rights here and, I would say, the right to have the two of you sit down when all is calm and just talk about this.
A LL counselor - trained in family communication - might be good but, regardless, you two need to set some guidelines here - and he needs to be as responsible as possible in all this. Planning is part of that, coming to understand as best possible what's going on with him, etc.
He needs to figure a way to convey to you when he might be in the communication or emotion "danger zone"
You need to know that your safety, comfort and respect matters.
You need to have a way to -- I just can't type or think anymore. hoep you get mey dirft.
Posts: 48021 | From Tree House | Registered: Jul 2007
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momindeep
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Keebler...Absolutely agree...we do have a good track record of being able to talk things over and have understandings...so we have that going for us.
Timing is everything...so I will wait awhile to approach him...or he could possibly bring it up...it isn't out of scope for him to do so.
Patience.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Keebler
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- fluorescents bulbs ? if so, get rid of them (safely). they can cause neuro irrtn
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Very good, momindeep. It sounds like you are handling it well. Sometimes we have to give our men some space and then some extra understanding.
Finding out what REALLY upset him the most might be important to find out.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
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Reading more response I remembered that once calm and quiet I sat down with my family- one at a time- and explained to them I wasn't myself and hadn't realized I was doing this, etc.
I told them if I ever did it again to give me a signal so I would know it. (I think we had a word to use- can't remember now). If I started in that rage mode again they were to just calmly to keep repeating that word.
Fortunately it never happened again, but it helped us get thru the situation and gave us all some feeling of control.
Maybe you all could try using a key word you make up ahead of time to help defuse the situation if it happens again?
Tincup
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posted
It may also help to tell him it comes with the disease. He may feel scared and unsure of himself and it might help to let him know it is not acceptable, but it is fairly common.
LabRat
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posted
I think most do a quite, rage, as an example one day I was feeling very badly and my most powerful wife was after me to do some little something that I really, really didn't want to do but she kept after me, (sort of poking a soup-up wildcat with a short stick). I finally snapped, your always on my back I snapped! Even I knew this wasn't true, but you can't suck em back in once their out. It's fight or flight and I wasn't even half armed back then. After a lot of sucking up, it became a saying with us. I say "your always on my back," and she says, "I have to be"!
The other type I heard about was the wife brought a chainsaw in the house and went to work on the furniture!
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