Last week I used my food processor maybe 15-20mins over the course of an hour. It's a cheap one that makes a loud shrill noise, not pleasant but I didn't think much of it. That night I slept only 5 hours and woke feeling terrible, kind of 'shattered' for lack of a better word. My head was ringing and I was hypersensitive to any harsh noise or light. The next 2 days were about the same and it was only a bit better by day 4.
I've always been sensitive to noise and light but not like this. What's going on here? Is this fibro? Has anyone else had this experience?
My Dx over the last 3 years (and as many specialists) has been Sjogren's, then Lupus (SLE) with secondary Sjogrens, and recently MCTD. I asked my current Dr about the noise sensitivity and he says its not related to MCTD.
I have an appt with a ENT specialist next week but I'm pessimistic she'll find anything. It must be related to my auto-immune issues but how?
Any info would be welcome, I feel like I'm at the end of my tether here. The lack of energy and cognitive issues were bad enough and now this.
thanks, iggy
What is MCTD?
Lyme patients have sound and light sensitivity as do patients who have Mast Cell Activation Syndrome. Something to consider.
That would correlate with my own symptoms. Always been sensitive to light & sounds, but Sjogren's made it worse. I had Lyme's in the past too.
MCTD = mixed connective tissue disease.
Just thought I would mention that lupus(and I bet other autoimmune diseases) patients are known to have auditory hallucinations. It could be that the sound triggered something in your brain that makes it hypersensitive to sound or maybe trying to mimic that loud sound of the blender.
If you are taking antidepressants it might be that a visit to your psychiatrist could give you more insight in this. It is also possible that there is a med that could block this strange symptom. I would make sure to see the doctor or some doctor and get referrals if needed. This sounds like something that could make your life really miserable and the sooner you get a handle on it the better.
Years ago when my autoimmune diseases were escalating I would go to bed at night and lay there thinking that someone left the radio on. I could hear what sounded like mumbling from a radio. I would get up and search the house trying to locate the sound. I was taking antidepressants and my psychiatrist told me about the auditory hallucinations. Thankfully that passed eventually.
Also, I don't know the medical description for tinnitus but I would ask about this also. I have had tinnitus for over 18 years and there are times it can drive you up a wall with weird sounds. The best is the sound of birds chirping and the worst for me was jets taking off. Good luck. Irish
Sounds like one of my migraines....light and sound sensitive
and I do not get the headache associated with migraines very often.
Or they are not very bad for a migraine.
sorry your experiencing this.
take care.
shelly
Another remote possibility. Foods containing salicylates give me tinnitus. Did you eat a lot of green foods in a smoothie? (with that blender)
Just another thought - I know when I'm tired, I get more "on edge" about a lot of things. I call it jangly. I just jump more, startle more easily.
For me, Sjogrens and fatigue go together, and pain and fatigue go together. Don't know if the same is true for you?
On a practical note, I have inexpensive earplugs, which I use when sounds bother me. For example, when my partner has the TV on in the next room, and I can hear the booms from the action movie. Maybe earplugs would help dull the blender noise?
This was the first symptom I noticed 2 years before the dry everything started. I used to use ear plugs when running my vitamin. When I started an anti-inflammatory diet, the ear pain left. So for me, it had to do with inflammation I believe.
I have been hypersensitive to sound since I was a child. My only other "affliction" at the time was migraine, which, in later years , was more correctly diagnoses as probably cerebral vasculitis due to a most satisfactory response to steroids.
In my late teens, I was told it was either hyperaucusis or misophonia. What it amounts to is that I have excessively acute hearing, with what is called a lowered sound pressure level. The "normal" SPL threshold of discomfort is 120, with pain at 130, while I start to experience pain at about 100, which is the normal level given for "disco at 1 meter". Normal conversation at 1 meter rates 60, and sometimes even that is uncomfortable to me. I got rid of all my carpets because the vacuum was killing me! There are also certain frequency or volume ranges to which I am more sensitive, even at lower SPL. In the more extreme reactions, I've experienced migraine, vertigo, nausea, tinnitus, facial twitching, and stabbing pain in the ear. My more everyday reaction is crankiness, so it's just the "Mom to teenager, TURN THAT DOWN" syndrome.
Bottom line is, although no one seems to know the actual cause, it's thought to be a result of the way the brain's central auditory processing center perceives noise, so a pschyo-neurological issue. None of the neuros, psychologists, or audiologists I've spoken with seem to think it's related (in my case at least) to Autoimmune issues.
I have noticed that since onset of my Sjogrens my sensitivity to light and ESPECIALLY nose had increased considerably. My hearing has become very sensitive over the years. It seems to be more acute now than when I was a teenager. Not in a pleasant way.
Thanks so much for the replies. I've learned a lot.
jazz and maria: I thought of Lymes also but I don't recall having the initial symptoms (flu, joint pain, rash, etc). Is it possible that the onset was mild enough that I didn't notice it? I was tested 2 years ago but maybe its time for another test. We have tons of deer ticks around here and it would explain a lot.
irish: I haven't had auditory hallucinations but tinnitus could be part of it. I've discovered that earplugs are useful to protect from short bursts of noise but don't help in the long term. After a while they seem to trap the white noise inside my head which then becomes louder. Sounds pretty nuts doesn't it?
eye: I had my first migraine in many years a year and a half ago. That could be the same time the sensitivity increased.
jazz: I haven't heard of salicylate allergies before, it's an interesting thought. I was making pesto that night btw but I didn't have any.
warm: when I'm stressed my symptoms are worse for sure but its been a week now and still no relief so I think something else is going on. I bought Bose Quietcomfort 20 earplugs last week when this started, they should be here today. It will be interesting to try them out.
Kell: What does your diet involve? Anything specific to stay away from?
Linda: The first thing I found when I looked into this was hyperacusis. I used to go to see loud bands all the time now I don't even dare go to crowded restaurants because of the noise. I've noticed the increased sensitivity for several months now but having loud noise cause a 'flare' (if that's the right term) is new.
MsKitty: Yes, me also. My Sjogren's diagnosis, Raynauds symptoms, etc, started around the same time as this increased noise/light sensitivity, that's why I think they're related. My rheumy disagrees though. :-\
Thanks again for all the ideas. I'm ready to try anything. I was given tramadol for the constant ringing headache and it helps a little, but only a little. Ibuprofen wasn't doing anything. Changing my environment helps. It was a major victory for me when I discovered how to turn off the piercing 'BEEEEP' on the microwave. ;D
-Iggy
Quote from: irish on May 08, 2016, 04:31:43 PM
Just thought I would mention that lupus(and I bet other autoimmune diseases) patients are known to have auditory hallucinations.
Oh, I never heard of that! But just last week or so one morning I got up because I specifically heard a dog banging the kitchen gate (they do that when they want to go out). However, when I was up I saw the pooches sound asleep in their places. No-one in the kitchen! And this isn't the only time I've heard something that didn't happen. Eery!
Oh, and yes. I'm increasingly sensitive to all possible sounds :(
Yes, I have sensitivity to sounds, particularly the pitch of a noise. Some noises are rather soothing, like an electric fan at night or the humidifier.
I also have hallucinatory sounds: the radio, a machine running, someone talking in another room, etc.
I can't begin to describe the tinnitus....suffice it to say that I have three different sounds in my right ear, AT THE SAME TIME.
When I wear my hearing aids, the sound issues are less, I've found. Tho' of course hubby, who has the IDENTICAL hearing loss with NO hearing aids, keeps the TV at ear shattering levels for me with my hearing aids
Oh well, it's always something.
Hugs, Elaine.
Yes, noises do bother me, not all noises but some noises, some days!
OH my goodness.
I have never ever mentioned to anyone, including my husband
that I hear conversations in another room.....can even tell difference
between male or female voices. I noticed it 2 years ago.
I live out in the county...no one was home....no radio or TV on.
I thought people would think I was going looney. I even got out of
bed... out of a chair to check that the answering machine wasn't on
and someone was speaking.
So.......that's normal? auditory hallucinations?
This news sorta makes me feel better/normal.
shelly
Quote from: ignatz on May 09, 2016, 09:02:27 AM
Thanks so much for the replies. I've learned a lot.
jazz and maria: I thought of Lymes also but I don't recall having the initial symptoms (flu, joint pain, rash, etc). Is it possible that the onset was mild enough that I didn't notice it? I was tested 2 years ago but maybe its time for another test. We have tons of deer ticks around here and it would explain a lot.
Hi Iggy,
I've never heard of the onset being slow. Just so you know there is not 1 conclusive test for Lyme's, because of false negative readings. But if you would have contracted Lyme's I'm sure you would be very much incapacitated by now. Sjogren's being the lesser of 2 evils, in my opinion...
Edit: fatigue, hypersensitive hearing, muscle or joint pain are very common symptoms of Sjogren's. I fight off my fatigue successfully with thyroid hormones. For the bodily aches I still have not discovered any supplements I can tolerate.
Take care,
Maria
LInda hit the nail on the head. It is hyperacusis. I am a retired speech pathologist and this is a phenomenon observed frequently in students on the autism spectrum. Others may experience it, yet this is the most prevalent population exhibiting this VERY real and VERY painful symptom in public schools.
As I entered the perimenopausal period of life I developed sight and sound sensitivity. I too carry earplugs with me......have for about 30 years. (they are much improved :) ) I am widowed and have lived by myself for a dozen years. Though my husband had never enjoyed the stereo on as loudly as I kept it, he did turn up the TV. I found myself (after work) playing bridge with earplugs in to sit with him while watching TV. :) What we women do!
The sight sensitivity resulted in my living a cavelike existence.
Now then...after a couple years on plaq and LDP (now at 3mg) I let the sun shine in, I can actually drive on a sunny day without sunglasses, and my music is back. I continue to listen to TV on a very low volume. Don't know what that is about. Don't know which med made the big diff..or both! I believe the prednisone. The anatomy of the auditory canal is quite interesting....but all the understanding of it in the world can explain auditory perceptions. Quite interesting.
I can see why an audiologist would hedge on giving you a cause...but the neuro? Thought that specialization could explain what happens.
btw: I believe my SjS symptoms ramped up about the same time...will never know...but I think it. I haven't ever heard of a peri or post menopausal female complaining about these sensitivities as I did. Oh...and the autistic students I had, I was so relieved I had always understood their sensitivities and other behaviors which were soothing to them. We are all different. That doesn't make us peculiar--just different. Though, it is nice to have come to a personal conclusion it was SjS which brought mine on.
c3
ignatz.. Yes, you could have Lyme disease and not remember the onset. I got it when I was a child and who knows which "flu" got me or when exactly that was?
I would see if you can find a DR to sign off on the www.igenex.com Test .. #188 and 189 are the ones you need.
You can order a kit for free... then get a doctor to sign the form. When you send it in, you send the money for the test.
you can go to www.flash.lymenet.org for help with interpretation of the test since your doctor probably won't know the first thing about it.
Your immune system can sometimes hold the Lyme in check and then a trauma or illness allows it to come to the forefront. I was diagnosed probably 40 yrs after contracting it. Had many health problems over the years that were never identified.
Re Lyme's: The test I was given in 2013 is Lyme Disease Antibody Screen. I'll talk to my Dr about the tests Igenex does. My symptoms have been given 3 different Dx's already, it would be nice to have a definitive answer for at least one potential cause.
The link is www.lymenet.org now I think, at least that's how I found it. They have a very active support forum there, I'll check it out thanks.
cccourt: I was very encouraged to read that you had some success treating this. I feel like I'm living in a cave most of the time also. I just work then retreat to the safety my house where I can control the environment pretty much every night. Its one thing to do that in winter but it's summer now and if I keep saying no pretty soon my friends will stop asking.
Hyperacusis seems likely, I've always been sensitive to sound and light to some degree. To take one example: Remember CRT monitors? I would get a terrible headache and nausea in just a few minutes if the monitor was set at 60mhz (it creates a subtle flicker). It boggled my mind that others could stare at the same screen all day with no ill effects.
I'm currently taking 400mg (200mg x 2) plaquinel daily. I'm very interested in LDP, I doubt my Rheumy will go for it though. The only other med he suggested is mycophenolate. And yes it is strange that he dismissed any relation between my auto-immune issues and noise sensitivity. In fact his response was that, if anything, it might lead to difficulty with hearing. Can you direct me to more info about LDP?
Ugh, I'm on my 3rd Rheumy already and I don't want to start over again. I'll see what he says when I go in next month.
Thanks again for all the suggestions and ideas.
-Ig
An update in case someone comes across this later:
Re-tested for Lymes: Negative.
The ENT tested my ears. One ear is slightly better than the other and I have tinnitus but my hearing was good overall and she had no suggestions for the hyperacusis.
The Bose QC2 earplugs were some help, especially on long drives, but not a solution.
The Rheumatologist wouldn't consider low dose prednisone and in general has shown no interest in treating the hearing, fatigue and cognitive issues that cause me the most distress.
However my other doctor (why another dr? its a long story) was fine with LDP and so I started on 5mg/day last week. There was an immediate improvement to both my hearing and energy level. It wasn't a huge 'night and day' shift but it was significant. I feel like I can go out now, I'm listening to music more, life is definitely better. Now I need to educate myself more about LDP.
thanks again,
Ig