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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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Scripture du jour was MIA today! My apologies, we left early in the morning for a day trip down to Rochester to help my son with a gi-normous brush pile from 3 dead mature ash trees. Just got back (7:30pm). Too tired to post. Be back tomorrow. LL, sorry to ready about the new vertigo symptoms... ugh. Praying for that.
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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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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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Lea,

I appreciate that info. I will look into it.
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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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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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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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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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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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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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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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LL,
I emailed ya with my explanation.
🙂
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Scripture du jour Since the topic of being surprised or startled is "trending"... "This is what�God�says, ����the God who builds a road right through the ocean, ����who carves a path through pounding waves, The God who summons horses and chariots and armies� ����they lie down and then can�t get up; ����they�re snuffed out like so many candles: 'Forget about what�s happened; ����don�t keep going over old history. Be alert, be present. I�m about to do something brand-new. ����It�s bursting out! Don�t you see it? There it is! I�m making a road through the desert, ����rivers in the badlands.' " - Isaiah 43:19-21 (The Message) The Lord has something brand-new for me every day. Sometimes it comes "bursting out" (which startles me) and I sometimes freak out. I'm glad He doesn't want us to "keep going over old history." He wants us to always be in the present so that we can clearly see Him trailblazing for us.
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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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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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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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My friend, look up “Loop ear plugs” on Amazon.

https://www.amazon.com/s?k=loop+ear+plugs&crid=MH15LWOH5CK3&sprefix=loop+%2Caps%2C124&ref=nb_sb_ss_ts-doa-p_1_5

There are various noise reduction levels.

I carry them in my purse. Saves me when noise is making me want to jump out of my skin.

They are even pretty in one’s ears.
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Llama, no...you did not mention Zleep. Trouble is, steroids hype up the body to where sleep is elusive no matter how much stuff is taken. Now I go down to 50mg today and my startle reflex is ramped up horribly. Which worries me...where will I be in a week or two? Huddled under the covers shaking like a leaf w docs telling me there's nothing they can do to help me? I took a Xanax last night which did help w the noise and the shakes. I may have to ask about Paxil or something Idk. We're in uncharted territory here which is an ugly feeling. Chuck letting the interior garage door slam shut sends my body into reverberating shocks like crazy. Hearing him cough or sneeze is like a sonic boom. Ridiculous. Adding these symptoms on top of the level 7 dizziness is a lot to tolerate. I was so hoping for a reduction in symptoms by the 3 month mark, not heightened symptoms 😑

On another note, the IVIG infusion is Thursday at doctor Cs office. Here's hoping he gives me the correct infusion based on the one Unhealth ordered last month since Kaiser denied them doing it.
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Lea: Did I ever tell you about the sleep patch called Zleep? My DH got it for me. Maybe you could benefit from it?
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Lea,

I hope your dizziness goes away soon and that you start feeling better soon.
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Agreeing with Geaton in prayer for the dizzies will just quit already!

I’ve been known to wear earplugs in the grocery store, and in stadiums, and sometimes, just if the people in my house are too loud, so I have a small idea of what you are suffering with that super-sensitivity to light and sound, friend.

Praying that all goes well with your next treatment, wherever it ends up! 🙃
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BB.....since this is Central Nervous System related, the neurological team does not feel any vestibular pt would be useful. The lumbar puncture shows CNS inflammation to be the cause of this "drunk" sensation I'm suffering from and that there's no cure for it. 😑

PS: The man in my fb melanoma group who had a CNS toxic reaction to the dual immunotherapy treatment and wound up paralyzed, it took his body 6 months to get back to a somewhat normal baseline. He's still not 100%.....numb feet and gait is off, but he CAN walk.
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Lea, forgive me if this has been covered weeks ago--has anyone suggested Vestibular Physical Therapy? There are treatments beyond the Epley Maneuver, I learned yesterday.
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Geaton, amen to my dizziness coming to an end. I just wish SOMETHING would relieve it, but nothing does. I feel like if it was true vertigo vs a CNS issue, something WOULD help. The IVIG is being scheduled for late next week at Kaiser, which they prefer would be done at UC Health. Sigh. And the chaos continues. 😑 Nothing like having one's own doc prefer ANOTHER doc do their patients treatment, eh? Gives me a warm fuzzy feeling inside. Not.

Llama, still no sleep past dozing for me after 2 am every night. It's exhausting.

Chuck was gone from 4pm till 10pm yesterday at our grandsons play, which was great since my startle reflex was ramped up big time and his sneezing and coughing was sending me thru the roof. I was wearing earplugs while sitting in the living room. It's weird how my body is up and down from one day to the next and I never know what to expect. I think this is where the ivig helped me.....with the extreme sensitivity to light/sound that plagues me. It reduced the severity quite a bit and now it's creeping back in.

I'm still reveling in the feeling of having been part of a miracle lately, going from a dx of dying in 2 months time to being cancer free within 3 months time. No matter what side effects torment me moving forward, I will be forever thankful and blessed for this recent PET scan.

Today is yet another rainy ugly day in the Denver area which is unusual for us. Sunshine is our norm, but at least we're all GREEN instead of brown for once! 🤣😂

Happy Friday everyone! I hope you have some fun planned for the weekend 😁
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Scripture du jour Many here are still praying for LL's dizziness to end. As one who has had vertigo on and off since 1990 (and a full year's worth non-stop after my covid), I can totally relate to its impact. The opposite of dizzy spinning is stillness, which is often referenced in scripture and is good and desirable. In fact, the Lord commands us to be still, so that we can focus on what's important. "Be still before the�Lord�and wait patiently for him..." - Psalm 37:7 �Be still, and know that I am God.� - Psalm 46:10 "And [Jesus] awoke and rebuked the wind and said to the sea, 'Peace! Be still!' And the wind ceased, and there was a great calm." - Mark 4:39� May you experience great calm today!
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Lea: Hope that you can get some sleep.💚
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Praise God from whom all blessings flow….so much to feel grateful about, so very happy for you
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Give thanks to the Lord, for He is good; His love endures forever.

Psalms 118:29

Lea,

There is so much to be thankful for in our lives.

I’m so very thankful that you have no evidence of cancer. It’s truly a miracle and a blessing in your life.

Actually, it is a blessing for all of us who believed that this day would come.

Hallelujah!
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I’m still giddy over yesterday’s news!

Loved your prayer, as well, Barb! Amen!
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