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Cxmoody.....to what do you attribute the noise issue to? Anxiety? I've not spoken to another person with this problem before. I have 2 cases of soft earplugs which work fine to shut out the noise......I carry them with me also. So far, so good today TG.
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Lea - not trying to be snarky, and likely grasping at straws here, but maybe a white noise machine might help with the heightened sensitivity to sound? I got one for my daughter who tends to jump out of her skin at night at any little noise in the house, and it seems to help...
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No, not snarky NGE.....not at all. I have the oxygen concentrator which is the epitome of white noise, plus the roaring sound constantly going on in my ears......audio and hearing deficits......so that's not the answer either, unfortunately. The earplugs DO work.....I would just love to get rid of this heightened startle reflex or know what triggers it. It's a hateful thing. The Paxil DID get rid of it in 2000.....btw.
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LL,
I emailed ya with my explanation.
🙂
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Lea: So sorry that the steroids ramp up your system so much that sleep is elusive. That's extremely hard to bear. Prayers sent.
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Good evening, Lea Glad you are getting down to lower doses of prednisone. Hopefully your symptoms will start to decrease. Praying for that and for sleep.

I too have a take on hypersensitivity to noise and light as it's part of CFS/FM.
I keep lights low and startle more when I am having a flare up. The hypersensitivity, muscle pain and brain fog of FM are related to brain inflammation as I understand it. You have said you have FM. You also have brain inflammation from your treatment, Brain inflammation can be helped. 

I found it interesting that you said Paxil helped the startling. I have been on low dose antidepressant (Luvox) for the FM. It helped the pain. I am now weaning myself off it as I found it worsens arthritis. I have been off it before and then the FM got worse, but this time, with the supplements I am taking, I am not having any flare up symptoms. I gave you a list of supplements before but have refined it to make sure there is no interaction with prednisone. Sending you that information - covered in glitter!
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Hypersensitivity to noise and easy startling happened with my family member after a stroke. I was the caregiver and understood that it was due to brain injury from the stroke, but I’m not a medical person so don’t know for sure. Anyway, Lea, just tossing the info
in here for whatever it’s worth.
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Fawnby, that's my understanding - trauma of any kind to the brain causes inflammation which can cause these symptoms

Exercise is one thing that helps but, like you, Lea, I cant exercise, so I have looked for other things like stress reduction by deep breathing and supplements

Ongoing prayers. God is working even when we don't feel or see it.

"indeed, he who watches over Israel will neither slumber nor sleep. the sun will not harm you by day, nor the moon by night. the LORD will watch over your coming and going both now and forevermore." Psalm 121 1
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Lea,

The sensitivity to noise and light sounds miserable. I have awful tinnitus. I have had it since my 20’s. I absolutely hate silence because then I notice the awful constant ringing in my ears.

I have adapted to it if I am surrounded by sound. I always have music on or the tv. I need some sort of background noise in order to cope. I do have some hearing loss as well. I really should see an audiologist.

I hope your situation clears up soon. I sneeze constantly due to my severe allergies. You would hate being around me! My husband says that we should own stock in Kleenex!
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Oddly enough, new VERTIGO symptoms are cropping up now that I'm down to 50mgs of prednisone. Up till now, I've only felt dead drunk....no room spinning sensation ie: vertigo. Now, changing my head position in bed brings on the spinning feeling! Ugh. But, maybe this means things are changing or shifting and I can see the ENT for treatment, idk.

Fawnby, I've had no stroke TG....multiple scans and MRIs have proven that. The trauma that's occurred is to my central nervous system which can cause a TON of horrible side effects, I know. The light, sound and odor sensitivity being some of many.

I will also speak to Dr C about Paxil or something similar next week, although I feel like he'd write me a script for arsenic if I asked for it. I want to be sure the sensitivity issue is ongoing before I take an SSRI though.

I read a post from a gal in my Facebook group who had a craniotomy last August for brain metastasis I guess, Idk. Ever since, she's felt dead drunk! She's able to function, however,,,,,,walk, work, etc, she just does so while feeling drunk all the time, then not remembering a lot of what went on! She was saying she's been to 20 docs all who have no answers for her. She was wondering if anyone has a similar experience to share. Raises hand. I didn't have skull surgery or brain Mets, but yes to drunken feeling 24/7. Except I can't walk 15' w/o a walker. What a rotten position to be in.....her going on a YEAR with this crap! Disheartening to say the least.

Golden, ty for the supplement info. I don't have much pain to deal with, brain fog, etc..... it's the hyper sensitivity to noise, light, odor ( bedroom door has to be closed if Chuck is even boiling eggs) that's plaguing me currently, and the profound dizziness that doesn't let up. I had a friend em me today suggesting "counseling and exercise" to cure me and I literally laughed out loud. Not that I found the suggestion funny. Quite the opposite. People hear "dizzy" and they think Oh Big Deal! Too bad it IS such a hugely debilitating Big Deal that 2 hospitals full of medical experts can't figure out how to cure but Counseling.com will do the trick, eh? It's absurd we now live in a society where we actually believe Talk Therapy can cure EVERYONE of EVERYTHING! My ex MIL was a licensed "therapist" with her own shingle, I might add, and one of THE most unhinged humans I've ever had the displeasure of knowing. Laughable thought to pay her $$$ for advice.

I also asked Chuck if he could erect scaffolding around my exercise bike so when I Exercise To Cure Myself and begin to fall on my ass, the scaffolding will catch me! 😑 Hopefully I don't break the rest of my spine in the fall.....

I'm just being sarcastic....I am NOT referring to ANYONE here who gives me useful and helpful tips or supplement ideas, etc. Just to family and friends who think I'm making a mountain out of a molehill or something. I wish my situation on them for ONE 24 HOUR PERIOD OF TIME and then we'll talk again. Ha.
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Nhwm.....my sister in law has bad tinnitus. Her audiologist prescribed ONE hearing aid which cleared up most of her issue entirely! Idk if it would work for you, but may be worth looking into? 😁
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Lea,

I appreciate that info. I will look into it.
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Hi Lea: I reactivated my account on here to answer your question about brain surgery. (Actually had to create a new account with a similar name.) Yup, I've had a craniotomy and a cranioplasty, etc.
And while recovering there were quite a bit of issues for several months. I believe this was due to nerve trauma, as so many nerves were cut and were very sensitive.

Extreme sensitivity to sound was one of them. That lasted a few months. That was just awful, but as my brain started healing and calming from the trauma, it went away. Also had sensitivity to smells for months. Smells made me very sick. That eventually went away. I was dizzy for awhile, but I think that was because my eyes both swelled shut at first and I couldn't see anything for a few weeks unless I held my eyelid open with my hands. Walking was hard, had to hug walls to get to the bathroom at home. Plus, there was weakness and exhaustion that went away, too.

Over time, all of this stuff slowly faded away ... so hang in there. Our brains are very sensitive to outside stimuli, but they can calm down over time. With rest and in quiet - and time. Sounds like you are doing very well so far!

Cold compresses on my eyes helped with the swelling, and was very calming to me. I was in bed all of the time at first, and would lift my head a little at a time to help get used to the nausea and dizziness. I was never on prednisone, though. So can't answer that part of your question.

But, one thing I learned is that the brain doesn't want to be bothered! Either by surgery or illness. But, the effects tend to get better over time as your inflammation heals and fades. Many years later, I still have a plate in my skull and am doing fine now.

Best of luck to you as you continue to heal and thrive, and I hope this post was helpful to you.
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MLB......ty for taking the time to reactivate your account to help me out! What a blessing this is! I'm so happy to hear your issues resolved in time, words can't even say. My eyes get puffy and swollen sometimes too...... I know it's tied in to the toxic reaction. My DD says I look high. At first I couldn't get out of bed and was having brain zaps and no tolerance AT ALL to any meds. Things calmed down from that level....thank God......but keep changing and morphing as time goes on. The steroids have been masking the situation to date, I think. I won't know till I'm off on June 23. Nowadays I can sit in the Living room in my recliner almost all day. Some days only till 3 or 4 pm when I give up and go lie down in bed. But its progress I guess.

It's tough to have patience when every day brings no relief, you know? I'm sure YOU DO bc you had actual brain surgery I was not subjected to.

I found your post helpful and want to thank you again for your kindness
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Oh, Geaton, you have been so kind by posting comforting scriptures. You don’t have to feel badly about missing a post periodically.

Your warmth is felt by Lea and this forum even when you take time away to do what is necessary.
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No worries at all dear Geaton. I echo NHWMs sentiments and will see you tomorrow.
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Isaiah 40 NJKV

The everlasting God, the Lord,
The Creator of the ends of the earth,
Neither faints nor is weary.
His understanding is unsearchable.
He gives power to the weak,
And to those who have no might He increases strength.
Even the youths shall faint and be weary,
And the young men shall utterly fall,
But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.

Dedicated to Lea, Geaton, and Gershun today.
And to everyone who needs to renew their strength.
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Lea: I believe that I asked you if you've tried Meclizine for the vertigo/room spinning? Maybe it would be a bit lack luster or perhaps worth a try. Idk.
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Praying for your brain to CALM DOWN already.

LORD, we know that Your mercies are new every morning. Great is Your faithfulness. We ask for mercy on our friend. Would You please give her the gift of some incremental healing today? She needs hope that her situation will eventually resolve. We thank You, and ask this in the mighty name of Jesus. Amen.
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Praying in agreement for a decrease of these troublesome symptoms. Praise God for he is a God who hears us and heals us.

“Never stop praying.” —1 Thessalonians 5:17
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I am adding an Amen and Amen to both cxmoody and golden23's prayers, and trusting that Your will be done.
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Llama, meclizine was the very first thing prescribed to me in the hospital way back in early March for "vertigo" which wasn't vertigo, and did nothing to help my symptoms. Actually made them worse since the spinning sensation wasn't there in the first place, I've only ever felt dead drunk. Lately, when some true vertigo symptoms have cropped up, the meclizine also did nothing to alleviate the symptoms. I'm never an easy fix 😑

As far as me being glad to have this thorn in my side and be as totally debilitated as I am, appreciating the gift....yeah no. This situation can be spun in a variety of ways, but some RELIEF would be very much appreciated right now. I can be grateful for remission and still long for relief from over 3 months of pure suffering for both myself and Chuck. Ty for your prayer cxmoody....incremental healing sounds divine today.
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Please excuse the 'shot in the dark' research. Dizzyness could be Candida.
After taking antibiotics, a yeast overgrowth can occur.
Search instead for dizzyness with yeast infection.
Ask your doctors. See a functional medicine doctor?

Search Results
One of the major toxins that's produced by candida overgrowth is acetaldehyde, which the liver converts into a harmless substance. When our neurons are 'blocked', this can lead to feeling intoxicated and experiencing brain fog, vertigo and loss of balance.May 13, 2021

Candida: Symptoms, Treatments & Causes | Holland & Barrett
Holland & Barrett
https://www.hollandandbarrett.com › ... › Womens Health

Other:
Candida and Prednisone:
Additional predisposing factors for Candida infection include the use of antibiotics, oral contraceptives, or adrenal corticosteroids (such as prednisone). Underlying health conditions that may predispose someone to Candida overgrowth include pregnancy, diabetes, and HIV infection.
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Thanks send. We know what the issue/diagnosis is.....my body is having a severe toxic reaction to the 2nd immunotherapy treatment in the form of a central nervous system vestibular response ie: dizzy/hearing loss etc. What we don't know is how to get rid of it or calm it down. Or if it's permanent. The IVIG monthly infusions are thought to be useful to help me. So was the prednisone which is an anti inflammatory.
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Good afternoon, Lea. Re the counselling and exercise suggestion. Many people just don't get it. I think finally my dd is getting that more exercise and a visit to a psychiatrist will not solve my CFS/FM problems. It's taken a long time, but finally, about a month ago I think I got through to her. That's critical for me as she may be overseeing my care at some point.

So glad your dd is very in tune with your condition and your needs. It's important that someone knowledgeable is there to advocate for you.

((((hugs)))) to you this afternoon and prayers, always prayers. God has put you on the top of my prayer list!
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Lea, I just pray that God heals you of all that you are suffering through. No lessons to be learned. Just the blissful comfort of no dizziness and you feeling like your true self again.

Why God allows us to suffer in the ways we personally suffer? Only God knows that. But I'm sure he loves you and wants you to feel great. Just keep believing that.
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LL and Golden, I sooo get you.

If I had a dollar for every time that some well meaning, exasperated relative suggested "massage" or "Plexus" or some other thing for my symptoms, I would be rich. Oh, and maybe I should "lift weights"! That's another one.

Mayo can't help me. Spent LOTS of time there, and saw MANY docs. They offered me a "class" in how to deal with my symptoms. I asked the Neuro. if the class was about Thinking Positive, Join a Faith Community, try to move, when you're not in pain, and while you're at it, throw in some unicorn and rainbows. He held back his giggle. I told him, "I thought so". Saw regular, local docs. Big city docs. Chiropractors. Tried every alternative therapy, as well. THOUSANDS of dollars spent. Oh, and I've HAD massage. Saw a practice of acupuncturists. They didn't think they could help.

Can you tell that this is something that sets me off? Gaaaaah!
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"Empirical evidence " isn't all it's cracked up to be, either, bc when they can't find enough of it, the "experts" resort to blaming US for our symptoms. It's an issue in our Mind, our Head, our Attitude, what we're Eating or not Eating, what Exercises we're Doing or Not Doing, and yada yada. And me, I'm one who HATES massage bc I detest people I don't know touching my body! 😂🤣😃 Also with me, my mind has not been affected by this toxicity THANK GOD, so to talk to me you'd never know anything was wrong. Just dizzy, pffft, no biggie. No blood spurting from my mouth or gobbledygook slurring from my lips, so she's A-ok. Not the case, but nobody gets it nevertheless.

Ty Gershun. I have been wondering how your ankle is doing these days? Updates?

Golden, it would be nice if a visit or 12 to a shrink could fix all this chit, wouldn't it??? As if we wouldn't be first in line at that door! Chuck and I are extremely fortunate to have my DD helping us w our health issues, understanding what's going on and being our advocate. Amen to that.
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Aw, Lea, so sorry things aren't getting better head-wise. I looked up "vestibular response" to try to understand what you are experiencing. You are one tough lady to keep pushing on!

Anyone tell you to try a Rife machine yet? (Unsolicited advice my husband received -- and rejected.)
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Gray,
I had to look that one up! 😂

Oh, my goodness! Yes, I’ll just run right out and spend $10,000 on a machine to ZAP my paresthesia away! 🤪🤪
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