posted
this symptom is getting really bad lately. Its not a startle reflex in the sense that I don't twitch or jump
i just get easily startled as when I am relaxed, on the verge of napping, the slightest sound sends me over the edge, it actually feels like it hurts, i get pain in my chest
the other night at work a co-worker was coughing a lot, and every cough just felt like it actually was HURTING me. the pain in my chest was bad.
not as bad as when I had the heart palps from going up stairs when I had orthostatic hypotension, that was more of a pounding. this is more of a pain/pressure/tightness.
even a small sound will startle me, but loud sounds hurt.
a few things different - i started artemisinin, could be a babs herx? I missed a dose of toprol, but these symptoms started way before that
Posts: 615 | From maryland | Registered: Oct 2007
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posted
I don't know what causes it, but it's not unusual for sounds to hurt. For instance, today, my husband and I both complained of pain when the fire engines roared past our house.
I described it as a tingling in the top of my head, but it's much more than that. Sometimes it travels down my back, and others, my whole body feels like it's vibrating. It varies based on the pitch and volume of the sound.
I don't think toprol (a beta blocker, right) would have an influence, but not sure. Not even sure which of Lyme or co-infections is responsible for sound sensitivity. Just know we have it soemtimes .
Posts: 168 | From Delaware | Registered: Aug 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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The same sort of intensification of symptoms occur when I take artemisinin. Sounds not only startle but also really hurt my ears.
I have found by starting slow it helps. This could be a herx reaction.
I've not done any regular protocol, though, having done the best I can mostly on my own. With all this mix, I have lots of vestibular diagnoses (inner, middle ear), and hyperacusis (even normal and soft sounds hurt). It may be inflammation of the nerves and of my brain, too, as well as a build-up of toxins waiting to get moved on out.
Are you taking some liver support supplements? That might be helpful. For now, it may help to avoid anything stimulating whether a supplement, food or activity.
The ears (inner ear/middle ear) may be somewhat involved but, for me, it's also the toxin buildup and the neuro/brain sensitivity. Or it's a little bit of everything.
So, all things addressed will help.
I hope you can call your doctor on Thurs.
I looked up the drug, toprol, but can't say how that might be interacting. Can you lessen or skip the artemisinin until you talk to your doctor?
Wearing ear plugs when you are exposed to noise (even your hairdryer) is vital to keep your brain from "kindling" - setting a reaction to irritation. Noise is irritating now, so go for soothing music - or just quiet - to settle down the nerve endings.
Artemesinin uses the Cytochrome P-450 liver detox pathway. So, if that gets pushed, be sure not to skip a meal and be sure to have some carbs. It is vital if that pathway is backed up.
Natural beta carotene (not synthetic) is also a remedy to help that pathway from creating too many porphyrins (by product of clearing toxins). Too many can create neurological symptoms.
It's hard to say if that is what is going on, but it is possible.
Magnesium is the #1 thing that helps me. However, if you have bartonella, ask your doctor how much you should take. In the meantime, you must do what you can to calm down your nerve cells. Magnesium is the #1 way to do that. It also is helpful for detox. B-6 before bed can also be helpful.
You mentioned "the other night at work." What shift do you work?
Do you use certain chemicals or perfumes or have you been around any new ones? Any new carpet or paint ? If so, be sure to get fresh air. It's good for your lungs - and your liver. Water, too, is good.
Just in case, be sure to check any cough drops or other stuff that might have aspartame/Nutrasweet or Aspartame it it. That will do it to me in a flash. Any form of MSG, too. All that stuff is excito-toxic so be sure to check labels of any new foods you may have had.
You can breathe, though. This should be reassuring: many people have reported such symptoms and, with treatment, it can subside. You have to keep yourself in a comfort level, though, as much as you can while you work through this. I sure hope you can talk to your doctor.
Adrenal support (not boosting) herbs can also help. For daytime: ashwagandha . . . Siberian Ginseng ( NOT Korean Ginseng). Those should be okay with your other stuff.
Evening calming stuff, though, ask your doctor in light of your other prescriptions. Magnesium, though, is still the clear winner for calming irritated nerve fibers.
Best of luck.
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[ 29. May 2008, 02:47 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I am wondering if I should stop the artemisinin. I have magnesium, but its prescription, its MgO (magnesium oxide)
I also have pinella which is an herbal thing, it says "brain cleanse" on it. I also have chlorella, which I think is a detox thing.
Posts: 615 | From maryland | Registered: Oct 2007
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What you describe is my constant, worst symptom. I have just a hyped-up nervous system constantly, ever since I got sick. I have seen absolutely no change with this since starting tx 3 months ago. I am adding Mepron and Flagyl today, we'll see how things go.
Just wanted you to know, you're not alone. My nerves feel like they're vibrating constantly. I totally understand the startle reflex, sound sensitivity. Let's hope we can find relief. Good luck.
Posts: 566 | From West Coast | Registered: May 2008
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What you describe is my constant, worst symptom. I have just a hyped-up nervous system constantly, ever since I got sick. I have seen absolutely no change with this since starting tx 3 months ago. I am adding Mepron and Flagyl today, we'll see how things go.
Just wanted you to know, you're not alone. My nerves feel like they're vibrating constantly. I totally understand the startle reflex, sound sensitivity. Let's hope we can find relief. Good luck.
Posts: 566 | From West Coast | Registered: May 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I had this a lot. Little things would startle me to the point that I couldn't calm down even though I knew there was nothing to be freaking out about.
I think it could be a herx. I had it long before getting dx or starting abx but of course a herx can bring about old symptoms or create new ones.
Posts: 2541 | From Northeast | Registered: Jan 2008
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bettyg
Unregistered
posted
yes, me too for 38.5 painful years.
was no better with antibiotics or supplements!
i wish us all a miracle on this aspect as well as extreme light sensitivities i've had the entire time!
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I hate to see you've not improved with this, I'm sorry...and a little depressed. How long on abx for you? Oral or IV?
This is one of the symptoms I just don't want for life - it's exhausting, uncomfortable...I just hate it! I hope we all can find some relief.
Posts: 566 | From West Coast | Registered: May 2008
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posted
i stopped the artimisinin and it went away. but then the sweats came back. the drenching, dripping wet sweats.
so i went back on the art and the sweats stopped. but I feel this symptom coming back.
I dont know which symptom is worst, the sweats or the nerves, but I figure the art must be killing something so I am better off taking it and treating whatever it is.
Posts: 615 | From maryland | Registered: Oct 2007
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posted
The super sensitive hearing and the "feeling like one giant pulsing nerve" are high up on my list of hard to deal with symptoms.
I had to have special ear plugs made that help block out some background noise while letting enough conversation thru that I can function at work.
Current LLMD says it's like throwing darts at a board. We'll keep throwing until we hit the combo that works. I'm on Art too and I don't know if it contributes to the problem or helps. I take the Mag by Niche recommended by Dr. B's protocol.
Too many meds, too many symptoms. Can't tell where the disease starts and the med symtoms begin...
If anyone out there had success with a particular combo of meds, please post for those of us who are still in the super sensitive nerve stage.
Thanks.
Posts: 237 | From WV | Registered: Mar 2007
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posted
Here, here motownlyme...yes, please...if anyone has ideas of a protocol that worked for them to help the hyped-up nervous system issues, I'm "all ears" (pun intended) as well. This jitteryness and hypersensitivity is the worst for me.
I feel plugged in all the time. My only pain is my neck (which is horrible). I hear others discuss all the joint pain which I thankfully don't have. But my central nervous system is just shot. Will orals ever be able to help this? I am 3 months on orals with no change so far...thanks.
Posts: 566 | From West Coast | Registered: May 2008
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posted
I have the heart palputations too, the dr said my magnesium levels were low. He told me to pick some mag up and take that. Did anyone know that Lyme bacteria (bb) feeds off Magnesium? I read that, my dr also told me that.
Posts: 22 | From N.East CT | Registered: Jun 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
For you guys suffering from light and sound sensitivities, please see my most recent post regarding thyroid and adrenals....It's under "In pain, depressed, fatigued...reexamine those thyroid tests"....
See the last comment I posted regarding adrenals...
Posts: 1155 | From Southeast | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
the entire post is good so don't just read her last comment at bottom ok!!
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I also remember when I felt like that that I felt really uncomfortable in my own skin like a tickly all over feeling. I couldn't get comfortable AT ALL and would rock back and forth on the floor to try to cope w/it. Did that happen to anyone else? It was excruciating.
Posts: 2541 | From Northeast | Registered: Jan 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I want to throw something in here---I've had that hyped up CNS feeling for soooo long, it sucks. We recently did an adrenal stress index test and discovered that my body was producing too much cortisol.....I was in stage 1--adapted to stress. NOT good. So we added a supplement called Seriphos 2x day, it's an amino acid that is supposed to tamp down the adrenals a bit. I've already noticed a huge difference in feeling less "hyped". so get that checked. It's a spit test.
Posts: 3528 | From US | Registered: Apr 2007
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Thanks, BettyG, for posting the link..I don't understand how to do that???
Laura--I didn't have that experience but hopefully someone on this board will chime in and share their experience with you...
CD57--That's GREAT information that you've just shared....It's interesting to me how some lyme patients have TOO MUCH cortisol and others have TOO LITTLE...It's amazing, though, to understand that just adjusting cortisol can have an effect on pain and on the "startle" reflex....
I, too, agree with the saliva testing...good stuff...
I just CANNOT EMPHASIZE ENOUGH TIMES THAT I strongly believe chronic lyme patients will really see a benefit if they keep examining their thyroid, adrenals, and hormones (which may change throughout different phases of treatment)...Remember, for example, things like recurrent nightsweats after retreating for babesia may be attributed to a hormone imbalance (I'm not saying it can't be a virulent strain of babs but it might be hormones as well)...
Good health to you guys!
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I noticed on my standard blood work just the other day that my LLMD was checking my cortisol level. Is the saliva test more accurate, different? If it's adrenals whacking my CNS and there's some way to settle this...I sure want to know. Thanks for info.
Posts: 566 | From West Coast | Registered: May 2008
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bettyg
Unregistered
posted
bugg,
i sent this to you privately so you'd see it, but thought others MAY have same problem, so copying my instructions here for COPYING/PASTING A DIRECT LINK TO ANY POST! *********************************
saw your comment here in this post, so copying the link here.
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