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Suddenly, my ears are ringing madly. Anybody got any opinions on my questions?
- Anyone else with RA get tinnitus as a fabulous free autoimmune benefit (not)?
[/*:34lretnd] - I take one or two Aleve a day – any chance the ringing is an accululated NSAIDs side effect? (grasping at straws)
[/*:34lretnd] - Can this cause permanent hearing loss? I am missing the urgency of the spring peepers high high sounds….[/*:34lretnd]
Meanwhile I am having a two month herx or flare that is proving resistant to doxy, prednisone, good diet, etc……. So I imagine that the ear thing has to do with disease progress. I am fearing that the disease is progressing, that this is not a herx.
Wish i had could develop faith and hope some of you have – so far, I'm all about the doubt.
Does a firmer belief in AP make it work better?klogan
Oh Yes,
I have had the ringing for about 2 months now and it does not seem to be AP related. My mother also had this but it just went away and she was not on AP. I guess this too shall pass. It is just another sweet from our diseases, at least that is the way that I am treating it. It is quite annoying especially at night.
Be Well
Sara
Hi Klogan,
What doses of doxy/mino are you taking? Daily or pulsed?
Check out causes of tinnitus here:
http://www.emedicinehealth.com/tinnitus/page2_em.htm
This article mentions intracranial hypertension lower down the page, as a cause of tinnitus and I vaguely remember reading something posted here on the BB a while back that said intracranial hypertension is a possible side-effect of mino. I don't mention this to concern you, but just something that may be relevant and of which to be aware. Mino can also cause vertigo (dizziness originating in the ear) and headaches due to this intracranical hypertension, too. I've had a bit of both. The dizziness and headaches generally pass with mino, if one is affected by them, so it may well be that the tinnitis does, as well…suggesting that these symptoms may well be herx-related.
You may be able to figure this out by (checking with doc first) lowering your mino dose to see if it eases. It may well be a herx symptom that passes, but if it continues, you may want to try doxy alone for a while and see if it resolves. Just thinking of ways to test this, really.
Otherwise you may want to check with an ENT to see if it's excessive ear wax or something else. 😉
Peace, Maz
Interesting!
Right now, I am only taking the doxy (big reaction to increasing abx dosage too fast), 50mg a day, MWF (well, actually FSuTu).Can I herx on 50mg a day do you think?
Oh, the terrible uncertainty of it all! I was just thinking of increasing to 100mg MWF. I just cannot tell if I am herxing or if the disease is just on a rampage.
klogan
I've never had tinnitus but when I started hanging around the MP cohort I found it to be uncommonly common amongst them. I would call it a legitimate fringe benefit (not) to these blasted infections. Again, I have no experience but they claim it resolves with treatment. Good luck.
[user=87]klogan[/user] wrote:
Right now, I am only taking the doxy (big reaction to increasing abx dosage too fast), 50mg a day, MWF (well, actually FSuTu).
Can I herx on 50mg a day do you think?
Oh, the terrible uncertainty of it all! I was just thinking of increasing to 100mg MWF. I just cannot tell if I am herxing or if the disease is just on a rampage.
That is interesting, so perhaps this is more herx-related? One of the oldies here may be able to fill you in more with this, as they've pretty much encountered it all here on the BB over the years, I'm sure. 😉
One can definitely herx on 50mg…just ask Fran and Michele! Dr Brown referred to this as the hypersensitive state and it became the basis for the rationale to begin slowly with abx to avert the big herx. Some people actually have to open their caps and count their pellets or crush their tabs in order to divide their doses into miniscule amounts.
You're not alone, though…it's very hard to distinguish between herx and flare states especially in the beginning, because there can be so much overlap. For the first 3 or 4 months, I worsened significantly…all my inflammation markers reached scary levels. After that point, everything started to come down gradually (don't know about anti-CCP as they only give an upper number of 60 and that still hasn't come below 60 though it may well have come down, too). Okay, I was on continuous dosing, so distinguishing herxing from flare was even more uncertain, although an elevated white blood count can indicate herx and mine was elevated for some time during last year. This was basically all I had to cling on to. (see herx info under “Education on site”). Sorry…would add the link, but must go out to physio in a min. :blush:
Now that I'm pulsing, it's become much more clear what is a herx, because it's pretty short-lived on just my mino days. Zith was different…when I started, I took it on T & Th and on the following Sat and Mon (exactly 4 days after each dose) I herxed horrendously and have now backed down in dose to 1 zith every 10 days. It's not the same for everyone, but over time as things settle down, a more predictable pattern may emerge for you. In the beginning, it can feel like you're herxing continuously…so it's good to figure out ways to detox yourself, which may help. Have you tried the lemon/olive oil detox drink yet?
Peace, Maz
I have had the ringing off and on for several years, but no change better or worse since I began AP. Mine is by no means frequent so I guess I am fortunate.
Amazing Maz!
I want to take enough abx to beat the disease, but not have continual joint pain. Right now, I have ups and downs of individual joints, but someone always hurts. It cycles through the shoulders, hips, knees, ankles, toes, and hands. Occassionally it throws in a neck or rib or excema attack. Wrists always hurt.
Perhaps I should try taking a week off of abx again, and see what happens, then start with 25mg doxy.
Unfortunately, my doc won't be too much help with this. He's affable, he'll prescribe, but he's not truly interested. He yawned with indifference at all my amusing reactions, like blistered toes and fingers. I thought it was entertaining!
Thanks,
kloganHi Klogan,
I so relate to your posts!
Dr. S did start me very low after the IV. Every time I try to bump up from 2 mg to 3 mg (I count pellets) I flare horribly. Like you (and Fran!) the dose size has me really concerned. Dr. S, just says hang in there. I went to him because when I first started AP, the road was so rough, I decided I wanted a very experienced AP doc and he was it. I was taking too much dose in his opinion. But having taken this last week off of mino because the flare was overwhelming, I really now can't tell what is flare and what is disease either.
I did notice ringing in ears during herx. Also a funny pressure in my teeth/gums or sinus. Fortunately, it never stuck around. Unfortunately, the disease is very entrenched in my rib cage. So it affects breathing and gets scary. I'm afraid of herxing because of instigating more herx in this area. :crying:
However, I now know after talking with Dr. S today that I have two forms of mycoplasm. (The tests finally came back!) So it mentally takes away the “what is causing this?” to a certain “kill the beasts!” How to do that without killing the patient?!!
This is so tough and I'm really glad that the people on this board are so supportive.
In re-reading Henry's book some more last night, I read that there are three definite periods of more intense flaring in the year and that's when the barometer goes up and down quickly. (Change of seasons)
Your question about belief in the protocol has been on my mind for the last while too. Certainly because my dose size is so different from others. I do believe that belief in one's medical treatment is very important. I am struggling with that as well. Overwhelming pain wears one's will down after so long. I liked Randy's comment about “Game on!” I keep thinking that now!
Michele
Hello klogan,
Yes. I have had tinnitus for several months now. I've been on Minocin for a little more than a year. I read that ringing in the ears can be a side effect of Minocin, probably doxycycline, as well. In addition, Aleve can cause increases in blood pressure, which might contribute to the ringing. Rather than bell ringing, mine is more like someone left their car engine on about a block away. Very annoying, but listening to Mozart helps quiet the noise.
There is some comfort in knowing that you're not alone and not going nuts; this too shall pass (with patience, luck, and a little help from our friends).
Best regards,
I had ringing on and off years before I got SD. However, I have noticed that since sick, sometimes the ringing “turns on” about 15 minutes after an aspirin or my minocin dose. It subsides after a few minutes, but it's almost always there in the background. My blood pressure, hearing, etc are all normal. Now that I rarely take nsaids anymore, I've noticed the frequency of “turn ons” is much less. When I'm somewhere really quiet, and especially at night, meds or not, it's more noticeable.
Yes, I've had Tinnitus now for 8 years, it came just before my RA returned after a 10 yr. remission. Drove me crazy because it never stopped. Finally heard about a doctor who does Tinnitus retraining ( look in Search) and he was just an hours drive away. I live in Virginia. Went to him for retraining, which is basically teaching your brain to turn off the ringing. Worked for me, I still have the ringing once or twice a week, but I know it will be gone the next day so no problem. He starts you out with a noise maker that masks the ringing, you wear it in your ear, a life saver, it was my crutch for awhile but was finally able to do without. However I still have, just in case. Rose
I found a hearing loss page, http://hearinglosshelp.com/weblog/?p=130, that says that doxy can cause tinnitus/hearing loss.
And so of course can aleve or ibuprofen. (http://hearinglosshelp.com/weblog/?p=34)I hardly know which essential drug to give up first.
I am so bummed.
I am definitely not hearing as well as I did a week ago.Hi Klogan,
The ringing started in my ears at 24 yrs. old. My right ear is really much louder. Hey..I have had this miserable ring for nearly 30 yrs. Just recently I have decided to go and get my hearing tested. It is getting to the point where I can not hear a phone conversation with the right ear. The left is ok, but not great. I can not blame anything but the diseases as the culprit as it started before the Minocin and the I.V's.
I never totally get used to it. One would think that after all of this time, I would have but not so…. It helps to have some background noise going on to muffle it some. Maybe it just changes the focus a little is all.
Diane
Hi Klogin, I found the website of the doctor who helped my tinnitus. It is http://www.audioaerobics.com click on tinnitus help. He was trained by the doctor at Maryland university hospital who cured William Shatner (Star trex) of his tinnitus, his was so bad, because he had it in both ears, that he was thinking of suicide.
I don't know where you live but maybe contacting this website you could find someone close to you. Good luck Rose
- Anyone else with RA get tinnitus as a fabulous free autoimmune benefit (not)?
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