PDA

View Full Version : Things seem to be getting better but some things are just bizarre!



serand4
09-19-2011, 03:45 PM
Hello to all! I've been having good luck on my Cellcept -- more energy and I'm able to breathe more easily. I'm down to 13mg of Prednisone which is a complete miracle because prior to the Celllcept, I could barely breathe if I went below 20mg. It's nice to start getting some of the "moon face" to diminish.

A couple of odd things are the swellings in all my joints -- I've not had it too bad in my upper body before. Also, I have begun to hear things at night. I got off all sleep aids. But I still have plenty of nights that I hear some thing like a music box or these frightening noises or words. I told my doctor and I see a psych tomorrow. Nothing compels me to harm myself or others. I just get spooked!

One thing about it, I'm just not going to be running off to the ER whenever I have pain in my chest (which occurs much less since the Cellcept) or for anything short of near death. I think I've worked through this enough to just wait and let the next doctor tell me what to do or what I have. My pain doctor blithly mentioned that my body is full of bursitus. Between the bursitus, fibro, lupus and arthritus, I think my doctors can now believe me when I tell them how hard it is to deal with my body pain. But it simply helps to know what's causing it. If I can just get disablity, maybe the reduction in that stress will help in some way.

Take care all! I don't know about you guys but I'm so grateful for Fall. For once I'm not constantly drenched in sweat! Strange blessings - but I'll take what I can get!

Gizmo
09-19-2011, 04:36 PM
YEAH for improvements! I hope things continue to go in the right direction for you!

rob
09-19-2011, 04:52 PM
Hi Serand,

Do you have any measurable hearing loss? What I mean is, would you consider yourself to be "hard of hearing"? People with hearing loss often experience auditory hallucinations. A hallucination simply being your brain interpreting sensory input in the absence of such input. They can be visual, auditory, olfactory, or tactile. I experience "tactile hallucinations" that are caused by CNS damage. I'm always thinking I've just stepped in a puddle of cold water, when there's no water present. People with hearing loss are prone to hearing "things" that aren't there.

I have significant hearing loss in both ears from a couple of different events. The big one was being in close proximity to an explosion. My ears ring badly, and I hear odd distant sounds that I've identified as not being there. I'm fairly used to it now. Auditory hallucinations fall into two basic categories-those that are caused by physiological damage to the inner ear and/or the respective structures and nerve pathways, and ones that are caused by psychological manifestations of a mental illness such as Schizofrenia.

There is a major difference between the auditory hallucinations of someone suffering from one or more forms of mental illness, and those of a person who has them as a result of hearing loss from an injury, disease, or other environmental factor. In the mentally ill, the sounds are usually voices speaking clearly with some sort of personal meaning to the person hearing them. In people with hearing loss, the sounds are non-distinct, distant, and difficult to identify. I sometimes hear what sounds like construction equipment running nearby, or I hear what sounds like a distant orchestra tuning their instruments. Other times it sounds like a radio that is not quite tuned in properly. There are sounds that sometimes ring familiar, but I can never put my finger on just what I'm hearing.

If you do a Google search for either Auditory Hallucination, or for the term Musical Ear Syndrome, you should find plenty of info about it.

Rob

tgal
09-19-2011, 05:20 PM
Hi Serand,

Do you have any measurable hearing loss? What I mean is, would you consider yourself to be "hard of hearing"? People with hearing loss often experience auditory hallucinations. A hallucination simply being your brain interpreting sensory input in the absence of such input. They can be visual, auditory, olfactory, or tactile. I experience "tactile hallucinations" that are caused by CNS damage. I'm always thinking I've just stepped in a puddle of cold water, when there's no water present. People with hearing loss are prone to hearing "things" that aren't there.

I have significant hearing loss in both ears from a couple of different events. The big one was being in close proximity to an explosion. My ears ring badly, and I hear odd distant sounds that I've identified as not being there. I'm fairly used to it now. Auditory hallucinations fall into two basic categories-those that are caused by physiological damage to the inner ear and/or the respective structures and nerve pathways, and ones that are caused by psychological manifestations of a mental illness such as Schizofrenia.

There is a major difference between the auditory hallucinations of someone suffering from one or more forms of mental illness, and those of a person who has them as a result of hearing loss from an injury, disease, or other environmental factor. In the mentally ill, the sounds are usually voices speaking clearly with some sort of personal meaning to the person hearing them. In people with hearing loss, the sounds are non-distinct, distant, and difficult to identify. I sometimes hear what sounds like construction equipment running nearby, or I hear what sounds like a distant orchestra tuning their instruments. Other times it sounds like a radio that is not quite tuned in properly. There are sounds that sometimes ring familiar, but I can never put my finger on just what I'm hearing.

If you do a Google search for either Auditory Hallucination, or for the term Musical Ear Syndrome, you should find plenty of info about it.

Rob

Never does a day go by that I don't learn something here. Every once in a while though, I get one of those "ahah!" moments. This thread is one. AHA!!

I have some searching to do but thank you Rob! You may have just answered a question for me and I may not be COMPLETELY crazy! (a little crazy but that never goes away)

rob
09-19-2011, 05:28 PM
Never does a day go by that I don't learn something here. Every once in a while though, I get one of those "ahah!" moments. This thread is one. AHA!!

I have some searching to do but thank you Rob! You may have just answered a question for me and I may not be COMPLETELY crazy! (a little crazy but that never goes away)

As long as you don't have voices telling you to grab a steak knife and run around the house yelling Redrum, you should be OK. (insert smiley face)

magistramarla
09-19-2011, 09:02 PM
Serand,
I'm glad that things are improving for you.
Could the sounds be the beginning of Meniere's Syndrome? I often hear some pretty funky sounds that no one else hears. I will also get mild vertigo and lose my balance from it.

LOL- I remember when I kept thinking that I heard the doorbell during the night. I often sent my husband to check it out. We had teens at the time, so we kept blaming it on their so-called friends. We thought that the kids were ringing the doorbell and running away. I finally figured out that it was the Meniere's causing the ringing in my ears and nobody could hear it but me!
Hugs,
Marla

Linda From Australia
09-20-2011, 03:44 AM
I used to get so angry at my sister because she moved around so much in her bed at night time that I had trouble sleeping. We used to have some really bad fights about this. Until one night when I told her off for the last time. The problem was that she wasn't even at home that night. Oh my gosh - I had to say sorry to her so much for all the years of fights I caused. All because I heard things that weren't really there.

I am happy that one part of your health is improving, and really hope that the other things that are bothering you are sorted our very soon.

serand4
09-22-2011, 05:05 PM
You guys make me feel much better. I don't think I'm losing my hearing --- now my eye site... I appreciate the information though. If I waited for the doctors to tell me, I'd be in a sanitarium by now!

Thank you again!

serand4
09-28-2011, 02:32 PM
I also found that getting off of prescription sleep medication has helped. Ambien is one tricky little cocktail and I have boycotted it from my medication options. Lunesta is useless to me so now I'm going back to the tried and true method of melatonin and not sleeping so much through the day. But there was some strange stuff going on for quite a while. I would wake up hysterical because I was sure someone was going through my house (and as a mother, you want to yell, take anything you want but stay away from my child!!) But, thankfully, I've been hullucination-free for about a month.

Thank you again for your help and support. My laptop is broken so I have to use my son's computer and I'm not a big fan of hanging out in his room so you can only imagine how much I miss daily contact with you all!