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Author Topic: Tinnitus - Ringing in the Ears?  (Read 12928 times)

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Offline kjonyou

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  • Posts: 15
Tinnitus - Ringing in the Ears?
« on: June 15, 2008, 01:51:41 PM »
I have been pos for almost 20 years, been on several rounds of meds and familiar with some of the common side effects but I have a new one no once seems to have heard of in relation to HIV.  I have a constant low volume ringing in my ears commonly referred to as Tinnitus.    This started at the same time I switched meds to Intelence Isentress.

Before you say talk to your doctor, I already have.  He said he has not heard of it related to HIV meds before and basically said come back in a few months. I know it started when I changed meds I just don't know if its the cause.  Anyone else ever experience a ringing in the ears side effect?

Offline Miss Philicia

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Re: Tinnitus - Ringing in the Ears?
« Reply #1 on: June 15, 2008, 02:35:02 PM »
Anyone else ever experience a ringing in the ears side effect?


No.  I'm on Isentress too since November.  I'm also in a long term support group and I know of 3 other people that went on Isentress around the same time and none have reported anything like this.

While I appreciate that you discussed this with your HIV specialist, perhaps it's time to consider going to an ENT specialist to have this checked out?  Obviously things can happen to all of us that are in no way related to either HIV itself or the meds we take for it.
"Iíve slept with enough men to know that Iím not gay"

Offline sharkdiver

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Re: Tinnitus - Ringing in the Ears?
« Reply #2 on: June 15, 2008, 04:18:01 PM »
Philly is correct in seeing an ENT to get it checked out. Another type of specialist would be an audiologist, who would not only diagnose but provide treatment.
Here is a web link to ASHA (the American Speech-Language and Hearling Association) you might want to check out. They also can locate an audiologist near you.

http://www.asha.org/public/hearing/treatment/tinnitus_manage.htm

There are many possible causes for tinnitus.

Sharkie

Offline keyite

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Re: Tinnitus - Ringing in the Ears?
« Reply #3 on: June 15, 2008, 06:11:55 PM »
Yes, but from Sustiva, not Isentress. It's not constant but the start of it definitely coincided with starting HAART. It's still early days for me, and it does seem to be diminishing, so there's hope it will just go away eventually. My doc says it's a rare side effect but not unheard of.

Offline newt

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Re: Tinnitus - Ringing in the Ears?
« Reply #4 on: June 15, 2008, 07:39:38 PM »
Hmmm

Tinnitus ... 15%+ HIV-positive people experience this, sometimes connected to meds (perhaps a form of neuropathic injury), sometimes the virus. Some reports put the figure higher. So "not heard of it" don't impress.  It is, along with changes in sense of balance, a noted, if uncommonly reported, side effect of Sustiva (an NNRTI like Intelence).

Isentress and Intelence are new and there's no reason for any doc to have heard of a particular side effect from these drugs, most will emerge now the drugs are licensed and in more general use. Pre-marketing studies don't include enough people to get all the side effects sorted.

- matt
"The object is to be a well patient, not a good patient"

Offline J.R.E.

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Re: Tinnitus - Ringing in the Ears?
« Reply #5 on: June 15, 2008, 08:45:47 PM »
Hello Kjon,

I've been dealing with Tinnitus for about four and a half years now. There are a few of us here, on the site dealing with this.

Mine also started shortly after I started on HAART. I've been to an ENT, had hearing tests done, everything comes back ok.

Have you been on Dapsone? There is a possibility Dapsone can cause tinnitus. I was on that for a while, throughout 2003 and 2004. I believe mine is virus related. There are some days when it is very noticeable, other days when it's not, but it's there all the time.

I've also been positive over 20 years, with the aids diagnosis in 2003.


Ray
« Last Edit: June 16, 2008, 07:26:42 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline J.R.E.

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Re: Tinnitus - Ringing in the Ears?
« Reply #6 on: June 15, 2008, 08:49:34 PM »


Here's a link from a while back :

http://forums.poz.com/index.php?topic=14611.0


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline kjonyou

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  • Posts: 15
Re: Tinnitus - Ringing in the Ears?
« Reply #7 on: June 16, 2008, 06:54:53 PM »
Hello Kjon,

Have you been on Dapsone? There is a possibility Dapsone can cause tinnitus.


Ray

No, have never been on that, but was on Crixivan 2 cocktails ago.  The last round included Sustiva which really messed with my head, dizzy every morning, vivid dreams, some ringing etc.  I wonder if its possable to go with a sort of withdrawl from that since I switched?  I know some of the side effects of my new meds included headaches which I did get for a while.

Offline rondrond

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  • Posts: 1,712
Re: Tinnitus - Ringing in the Ears?
« Reply #8 on: June 17, 2008, 12:43:03 AM »
I have had ringing in the ears for years. Like Ray, it is sometimes more noticeable on some days and less on others, but always it is there. Usually it is the loudest when I awaken suddenly. I report to my doctor that I swear it was the ringing in my ears that woke me up as it seems to be as  loud as an alarm. To date, Doctor has remained silent on my ringing ears, but it could be because it is not something I bring up at every appointment. Only when It is noticeably loud.

I have been POZ for 15 years, so I don't what to attribute it to, as I just seemed to 'notice' it one day, and then it's just been a hit and miss ever since.
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline kjonyou

  • Member
  • Posts: 15
Re: Tinnitus - Ringing in the Ears?
« Reply #9 on: June 17, 2008, 10:14:04 PM »
That is exactly what I got, loudest when I wake up.  The Doc said it didn't make any sense since it should be loudest when we take the meds if that was the cause.  I don't necessarily buy that, when we wake up all sorts of things are changing in our body from blood flow to respiration.

I guess the question is, at least for this forum, it seems like the doctors are afraid to address this issue as related to HIV?

Offline mewithu

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  • mewithu
Re: Tinnitus - Ringing in the Ears?
« Reply #10 on: June 18, 2008, 11:36:27 AM »
Sometimes we need a different opinion from like a general MD it is something I really recommend for you to do soon as you can. remember to get all the info transfer to them so they can make an intelligent decision. Hope you find your answer. Much care.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline bearby

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  • April 2007
Re: Tinnitus - Ringing in the Ears?
« Reply #11 on: June 18, 2008, 12:16:44 PM »
I too had much the same symptom of the ringing in the ear and what my id dr thought was that I had a cold some where in my inner ear and gave me a script for some thing that I do not recall the name of that  actualy worked after I took it a week or so .
Have you preformed your random act of kindness today ?

Offline TucsonPaolo

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    • How Paolo lives with HIV
Re: Tinnitus - Ringing in the Ears?
« Reply #12 on: June 18, 2008, 04:52:28 PM »
I am so glad to read this because I've been having the Tinnitus since I began treatment with the same two drugs.  Fortunately it is low enough that I can tune it out for now.  I am sorry that anyone else has this problem too as I know it could be annoying.  Now I will point this out to my doctor and give him something to challenge his brain for a change.  Thanks so much, Paolo
Some die that the may have hope, some because they have none.
Paolo Presa

Offline MitchMiller

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Re: Tinnitus - Ringing in the Ears?
« Reply #13 on: June 18, 2008, 10:57:00 PM »
KJon:

This topic has been reported by many here since I've been lurking (around 6 years now).  I got tinnitus during seroconversion.  It went away as I recovered from my initial illness... only to reappear about 7 months later when my tcell count dropped down around 200.  It has remained ever since (5.5 years now).  Before I started meds, I discovered selegiline helped make the high frequency tones more tolerable.  Initially I was about to jump off the nearest bridge.. it was that bad.  When I first started meds, they helped make it yet more tolerable.  Sustiva always made it louder within an hour after taking it on an empty stomach.  Over the last couple years, Abacavir and Epivir now also make it louder.  I notice it almost within 20 minutes after taking the meds... always worse when taken on an empty stomach.  I hate it, but I've learned to live with it.  In fact my head feels like I can "hear" electrical pulses flowing through it.... lovely.

Offline dapperden33

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  • Posts: 15
Re: Tinnitus - Ringing in the Ears?
« Reply #14 on: June 19, 2008, 12:12:16 AM »
I started/added Isentress to my regimen a week ago and have had ringing in my ears and headaches.  The ringing is louder at times, noticing it more after I take  my meds.  It's bothers me but I try to tune it out  by focusing  on something. The headaches are bad. Hopefully, I will get used to Isentress and these side effects will lessen.  Really glad I'm not alone, thanks for posting about this.  I will feel more comfortable talking with my doctor  about it. 

Offline kjonyou

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  • Posts: 15
Re: Tinnitus - Ringing in the Ears?
« Reply #15 on: June 19, 2008, 02:54:01 PM »
If you got it, talk to your doctors about it.  All they know is what they read from common side effects and if they hear it from more then one person maybe they will do something about it.  But if we keep quiet and just live with it, they will think the one guy who complains about this is not credable.  Just becuse it didnt show up on the Drug Manufactur test group dose not mean it cant happen.  Look at all the other side effects they found out years later after being approved by the FDA.  Oh ya, sorry about that cholesteral elevated to unatural leves, hair loss, or wasting, depression and death, that came with those meds. 

Offline Sydney

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  • Posts: 25
Re: Tinnitus - Ringing in the Ears?
« Reply #16 on: September 17, 2008, 07:32:33 AM »
For what it's worth, I've been positive for 23 years and not on meds.  I developed mild tinnitis in one ear about a year ago; it doesn't worry me much and it's often not there.  It didn't occur to me that it could be virus-related, but having read the above, maybe it was.  If so, for me it wasn't related to medication.  It was, however, about the time my CD4s dropped to the low-to-mid 200s.  I have a non-pos friend who says that Ibuprofin gives her tinnitis.  So ?????  Better go now, I can hear something ringing ;)

Offline auspoz

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Re: Tinnitus - Ringing in the Ears?
« Reply #17 on: September 17, 2008, 09:13:59 AM »
I know this is very different from what everyone is discussing here, but just thought I'd add my take. I'm not on meds yet, and I'm told I don't have tinnitus.

But, I've had musical sounds going on in my head since my diagnosis. At first it was very loud, and I could sing along, but now it's distant and in the background, but it never goes away. Actually, it's a bit exhausting sometimes. Just repeated bits over and over, a bit like an 'ear worm', but not making any sense.

My psych tells me it is an obsession, and that the drugs may be lessening it.

Auspoz

Offline mecch

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Re: Tinnitus - Ringing in the Ears?
« Reply #18 on: March 21, 2009, 09:29:03 AM »
I have had tinnitus from Zoloft, but then it decreased. When I went on Sustiva, I had ringing but I took Sustiva at night, went to sleep, and didnt notice in the morning. Now on Intelence, and again the Tinnitus which appears after i take a dose, then decreases. 
I imagine eventually this fades into the background. Oh well, medicine. I hope the ringing bother anyone too too much, because I've heard it can be quite tiresome!
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline minismom

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Re: Tinnitus - Ringing in the Ears?
« Reply #19 on: March 21, 2009, 01:43:57 PM »
Mim is suffering from Tinnitus, headaches, and dizziness.  Not sure what's causing them or how long she's been having it.  She just told us about it in December / Jan.  She's had a VNG and MRI done already.  She sees a neurologist Monday to set us up for a 24 or 48hr EEG.

I'm sorry you're having this and really hope you find some relief.  Mim's had it so long that the one day her head was "quiet" she said all other noise sounded "funny".

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline clsoca

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Re: Tinnitus - Ringing in the Ears?
« Reply #20 on: May 17, 2009, 07:31:27 PM »
I am sufferring from ringing in my ears very badly. It all started when I initiated atripla therapy and the ringing got louder and louder and now it has gotten too bothersome. I went to Drug.com probably the largest internet pharmacy and found this.

Less serious Atripla side effects may include:
dizziness, drowsiness, anxiety, depressed mood;
headache, tired feeling, ringing in your ears, vision problems;
sleep problems (insomnia), confusion, strange dreams, forgetfulness;
mild nausea, vomiting, diarrhea, loss of appetite, upset stomach;
darkened skin on the palms of your hands or the soles of your feet;
joint pain, back pain;
numbness or tingly feeling;
runny or stuffy nose, cough; or
changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).


At least this problem is recognized as a side effect.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline J.R.E.

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Re: Tinnitus - Ringing in the Ears?
« Reply #21 on: May 17, 2009, 08:16:41 PM »
I am sufferring from ringing in my ears very badly.

Clsoca,

Are you taking any other prescribed medications othen than the Atripla ? You should mention this to your doctor as soon as possible. Does the ringing seem to be stronger, just after taking the atripla? Does it diminish during the day, or remain about the same?


Ray
« Last Edit: May 17, 2009, 08:19:05 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline clsoca

  • Member
  • Posts: 164
Re: Tinnitus - Ringing in the Ears?
« Reply #22 on: May 17, 2009, 09:01:23 PM »
I am not taking any other medication other than Atripla. I already adsvised my Doc about it and he has asked me to tough it out for a couple of months or so in hopes it will go away. The ringing becomes intense about 3 hours after taking atripla and eventually levels off.

When I first started Atripla, it just put me to sleep. But the ringing in my ears slowly cropped up on me. Also, I also experienced hair loss which has being diagnosed as "sudden hair loss" resulting in the body being shocked usually by a surgery or injuries but in my case to Atripla therapy.

Any opinions.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline keyite

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Re: Tinnitus - Ringing in the Ears?
« Reply #23 on: May 18, 2009, 05:21:31 AM »
Tinnitus has been the only significant side effect I've had from Atripla. It was very strong for the first few weeks and months and I did have talks with my doc about changing to something else. She sent me to an ENT and for an MRI to check it wasn't caused by something else - it wasn't - nerves in my ears were undamaged.

I'm now more than a year into therapy and the tinnitus has now all but gone. Very occasionally I have it pretty faintly and for a short period of time. My doc said it could take up to a year to resolve and I was very skeptical but I guess she was right.

I'm glad I stuck with it, because otherwise Atripla seems to agree well with me and it's so easy to take. But I know how frustrating and distracting the tinnitus is, so if you can't tolerate it after giving it a chance, then no harm in thinking about changing.

Offline ARMANDO

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  • Posts: 243
Re: Tinnitus - Ringing in the Ears?
« Reply #24 on: May 18, 2009, 08:50:13 AM »
i also suffer from ringing in my right ear,sometimes its louder  but i guess most of the time i've just become use to it.i've seen some advertisements about a drug call LIPOFLAVNOID,has anyone ever tried this ,can it interact with hiv drugs?

Offline jgs

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  • Posts: 7
Re: Tinnitus - Ringing in the Ears?
« Reply #25 on: May 20, 2009, 08:04:04 PM »
Probably seroconverted around '87-'88 in Paris, tested positive in 92 on returning from France.  Tinnitus started before meds, with tcells in the 800's.  Started meds in mid 90's...with increasing noise, first in just my right ear, then both.  By '99 had an 80% hearing loss in my left ear and 60% in the right.  The tinnitus goes up and down, depending on red wine (tanic acid), caffeine, sugar, stress/high blood pressure etc.  Am now on Atripla with a steady 600 tcell count and zero viral load.  But, have hearing aids in each ear.  Will be 63 in Sept., so age and heredity (my father suffered from pretty severe hearing loss) has played its part.  A good friend in San Antonio who was an hospital administrator there, saw a study that some 2 to 3% of HIV long term survivors suffer moderate to extreme hearing loss.    Robert in my age, about the same numbers, long term and also has hearing aids in both ears...but his loss is not as extreme.  So, we had that history in common.  It's just one more of the aspects that can occur to long term survivors.  My hearing & hiv docs, from the very beginning, have both said it's smart to cut down on anything that causes tinnitus, as it has a negative, long term effect, and once you experience significant hearing loss it is permanent, no going back.  Anyone with a bad case of tinnitus should really try and cut down on any and all things that might elevate the "noise"...it means hearing loss, to one degree or another.  Again, it's all very personal, and very few of you will progress to significant loss.  It's just one more aspect of this disease and should be watched closely.  Good luck...john

 


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