Ringing in my ears

[Angiepkd]

Does anyone else have a ringing in their ears post tx?  I have had it for several months.  I have spoken with the tx docs about it, and they don't seem too concerned.  It isn't really bothersome unless everything is totally quiet (mainly at night when I try to sleep).  I was just curious if this is common after tx?  Any info greatly appreciated.  Thanks!

[Michael Murphy]

Look up tintinis and you will find it is usually not a major problem causing the ringing.  Hearing loss, ear damage or a circulation problem can be the reasons for this condition. Mayo clinic web site claims one in five will have this condition in the general population.

[Athena]

Angiepkd, if this just started after your transplant then I'm afraid it is likely caused by some of the new drugs you are on. Many drugs in fact can be ototoxic. Here is a link that discusses some of these.

http://en.wikipedia.org/wiki/Ototoxicity

I would discuss this issue with your transplant doctors, to see whether any changes can be made if there is a type of drug that is being used that has this side effect.

[Charlie B53]

Thanks for the link Athena.  I don't know why I never look there, as I have looked up a lot of stuff at Wiki.  Learned things today!  I've had tinnitus for almost 40 years, sometimes so bad it is difficult to concentrate on anything.  I can clearly see the relationship to med use, beginning with massive doses of aspirin, then almost 40 years of NSAID's which have scarred my kidneys and put my on Dialysis.  Somewhere in there Dr's started my on large doses of furosimide in attempt to keep what little kidney function I have.

There are a number of quack OTC meds, herbal supplements claimed to stop the noise.  Everything I've found is just snake oil.  You can spend a lot of money and get no improvement.  Do not waste your time or money.  Talking with your Dr about your meds sounds like THE best plan.  If he/she isn't aware then maybe you need to do a little more digging into possible side effects of each of your meds, and take that with you to your next appt.

[Deanne]

I've had this for years. I saw aspirin listed as a possible cause and I've been on aspirin for years due to a DVT many years ago. I don't think mine is very bad since I don't notice it very much. I always have the TV on at home for background noise and it usually masks most of it.

[Angiepkd]

Thanks for the link, Athena, and thank you all for your responses.  I am asked by my transplant neph at every visit if I have ringing in my ears, and I say yes.  I am guessing this means it is a medication side effect.  They aren't concerned with it unless it gets to the point where I can't stand it.  It is bothersome, but not unbearable, and with all of my recent issues with meningitis, etc., they don't want to make any med changes.  Guess it's just one more thing to get used to!  Glad I am not the only one.  Thanks for sharing your stories!

[Charlie B53]

Deanne, you make me smile with your need for 'background noise'.  Wife doesn't understand at all why I have to have the TV or radio on and turned up when reading a book.  It's that same need for distraction from the constant ringing in my head!

Most people haven't a clue of understanding.  And sometimes when our blood pressure is a little bit higher than normal, the inner noise can be quite disturbing, making it very hard to concentrate on any task.

[Athena]

Thanks for the link, Athena, and thank you all for your responses.  I am asked by my transplant neph at every visit if I have ringing in my ears, and I say yes.  I am guessing this means it is a medication side effect.  They aren't concerned with it unless it gets to the point where I can't stand it.  It is bothersome, but not unbearable, and with all of my recent issues with meningitis, etc., they don't want to make any med changes.  Guess it's just one more thing to get used to!  Glad I am not the only one.  Thanks for sharing your stories!

Angiepkd, I don't know what drug it may be that they are monitoring for the side effect of tinnitus but I would strongly suggest that you ask whether it's possible for a change. Tinnitus often goes hand in hand with hearing loss. The drug in question may over time cause hearing loss. HL is a terrible thing because once it is lost, it cannot be restored.

[Angiepkd]

I agree, Athena.  The ringing in the ears is one of the rarer side effects of Prograf.  It seems that I am very sensitive to Prograf, as I have most of the more common side effects, even on an extremely low dose (1mg morn/ 1/2 mg night).  The diflucan I have to take for cryptococcal meningitis interacts with Prograf, making my numbers high, even on such a low dose.  It is a fine line the docs are walking trying to keep my anti-rejection meds low enough so my body can fight the meningitis.  I am basically a chemistry experiment.  My tx doc would like to try me on Belatacept once I am fully recovered from everything else.  I am a little nervous about this because it is a recently approved anti-rejection med.  My doc says they have had very good results with it, and it isn't nephrotoxic like Prograf.  It is given via IV once monthly after the initial loading dose.  My center was part of the clinical trial, and are very hopeful that it will become the standard of care.  I wish it came in pill form, because starting an IV for me is a nightmare!

[jeannea]

I am not familiar with Belatacept. It must really be new if it's only in IV. I have heard that people took really disgusting liquid cyclosporine until it was available in those weird capsules protected by the awful smelling gas. I have no idea if there is liquid Prograf. I hope there is for kids. In the hospital recently they wanted me to take 125 mg of CellCept at night. The capsules don't come that way so I got the liquid. They have tried to flavor it but it has a really gross aftertaste.

I have trouble with IVs too. Maybe all of us do. Every month would be rough. Maybe you can get a port like a cancer patient. Some ports have the access point just under the skin. My niece had one. It has to be flushed once a month but they would do that while you're there for the med. I think they can access the port in the infusion center of your hospital which is probably where you'd have to go anyway. You'd have to do a month or two with a regular IV to make sure it doesn't give you any problems. Then maybe they would give you one.

I'm glad they're trying to keep you and your kidney healthy.

[Angiepkd]

Thanks, Jeannea.  The doctor did mention a port for me, so maybe it would work.  If you google Belatacept there is some pretty interesting info to read.  Hope you are doing well!