Is Anyone Else's Tinnitus All Over Their Head and Scalp?

Discussion in 'Support' started by Evian, Jul 22, 2015.

tinnitus forum
    1. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      I notice this first thing in the morning. My T seems to hate the stillness of my body sleeping and wakes me up after three hours and seems to be all over my head not just perceiving to come from my ears.

      I guess I just want to know that I am not on my own with this. I know it's a brain thing anyway, but I seem to be able to move my T about by pressing on my scalp

      I find it weird and frightening and despare of even getting a good nights sleep again. Read a story of one woman with T who had been getting 3 hours sleep for the last 18 years with her T. You wouldn't think the human body could do this to us and still keep us living.
       
    2. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      You mean like vibrations?
       
    3. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      Yeah and tingling did you get that Danny.

      My head feels likea pressure cooker, with the tinnitus at the ears being the screaming steam.

      Also I can feel my heartbeat gin g to fast as well, which is really frightening but I don't know if that is panic or if Pulsatile T is setting in as well
       
    4. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Fortunately I don't get that, but people with pulsatile tinnitus do. Can you hear your blood flow or heart beat?
       
    5. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      Yes that is on top of 24/7 white noise tinnitus and Hyperacusis.

      My central nervous system is shit to pieces I can tell. Even my sense if smell us affected :-(

      Glad you haven't got this anyway, it's the pits, well it's all the pits really
       
    6. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Yeah I know exactly what you are saying. My T bounces all over my brain and I get that creepy tingling feeling, like you can actually feel the sound creeping all over the place. If it's like mine, I feel for you.

      I kind of feel this in my ears too, a variety of sounds moving in and out of my ears and changing volume.

      I seriously would rather have my ass kicked every day twice a day than deal with this madness.
       
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    7. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      If you have hyperacusis, as I did...Try keppra, people are getting good results, in-fact most people are cured by using it! I have no hyperacusis myself anymore thanks to it! Head over here to read more about it! https://www.tinnitustalk.com/threads/levetiracetam-keppra-worked-for-my-hyperacusis.8946/
       
    8. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      How did you get yours ?

      I have a load of reasons but metal poisoning is my own diagnosis. That leaves T&H with loads of other weird stuff going on as it totally messes with the central nervous system.

      Hence tinnitus, Hyperacusis, Pulsatile, and I have a hyped up sense of smell.

      I'M sure if this doesn't kill me one way or another (well it's like a living death), that Alzheimer's will get me as the metals cross over into the brain.
       
    9. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      Thanks Danny. I'm frightened to add anything in or take anything away from the mix of what I am doing but I will consider it when I'm in a better place, been on amitryptilyne 10mg and zopiclone for sleep for years(not that they work now with all this going on) Where can you get Keppra
       
    10. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Keppra is quite safe..Especially compared to amitriptyline. You'd have to go to a GP and beg practically.
       
    11. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      barotrauma followed by Ototoxic drugs, Ciprodex ear drops and a bunch of other meds to treat my ears. I lost a ton of hearing really quickly in the upper range 8khz up. All that hearing I lost is now replaced by a storm god awful noise.
       
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    12. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      Just goes to show that we can all get the same symptoms regardless of what triggered it :-(
       
    13. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      What's wrong with amtriptilyne intake the 10mg lower pain killing does not the 400 mg depression dose

      I thought they often prescribed it for T , I was on it for Fibromyalgia
       
    14. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      It's ototoxic and can cause tinnitus.
       
    15. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      Bloody hell Ive been on it 12 years I thought they gave it to treat T

      Perhaps mine was caused by ototixic drugs then like Telis, although I still think it was metal poisoning

      I was a T accident waiting to happen, what with a metal mouth, loads of drugs a fligh just before the full ear feeling came on so possible barotrauma/ EDT a fall, stress and anxiety

      I don't think u can stop things cold when you have been talk g them for years it's dangerous

      Glad you are cured though with your cocktail of Keppra and the other one you take for the T

      I'm not that brave, but it's good that you are willing to share your experiences with others.

      Thank I will go jump out a window
       
    16. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      It's not ototoxic. It does not damage the cochlea or the ear in any way. To the extent that it can cause/worsen tinnitus, it must happen through a brain mechanism.... so if anything, it's neurotoxic, but, the evidence for that isn't very good.

      For any given drug, someone, somewhere, has developed tinnitus as a result of taking it. That doesn't mean that every drug is ototoxic. And, many, many, many more people have taken amitryptaline and not developed tinnitus, than have.
       
    17. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection

      Is Amitriptyline Ototoxic?


      by Neil Bauman, Ph.D.

      A man asked:

      Could you tell me if my sleeping pills, Amitriptyline, are ototoxic? I’ve become very concerned because my hearing loss was caused by prescription medicines after treatment for prostate cancer. The otolaryngologist kept on insisting it was coincidence, but then I did find out that the medicines, in fact, can cause hearing loss, although not for everybody. The effect was very gradual and not very noticeable until it was too late.

      Yes, Amitriptyline can be quite ototoxic to some people. Most complaints I receive concern loud tinnitus from taking Amitriptyline, although some people have also reported problems with distorted hearing and hyperacusis. If you notice any of these kinds of problems, it is quite possible that Amitriptyline is the culprit.

      Many doctors try to shift the blame for ear problems away from the drugs they prescribe. If a given drug gave every last person a hearing loss, then the doctors would have to admit that drug was the culprit, but when a drug only causes hearing loss in 10% or 1% or 0.1% of the people they see, they ignore it and say it must have been a coincidence. However, you now know that tinnitus (and other ear problems) do happen to numbers of people who take Amitriptyline.

      To learn which drugs are (or can be) ototoxic, see “Ototoxic Drugs Exposed“. This book contains information on the ototoxicity of 877 drugs, 35 herbs and 148 chemicals.

      Also I was on it for 3 months myself and I developed tinnitus in my other ear.
       
    18. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Yes, according to Neil Baumann, everything is ototoxic, because he doesn't really seem to know what the word means.
       
    19. Dr. Ancill

      Dr. Ancill Member Clinician

      Tinnitus Since:
      09/2013
      This is nonsense......very few drugs are ototoxic and it is usually drugs that have some cytotoxic action like gentamycin or anti-cancer drugs. The problem is how side-effects are typically reported to the FDA or other countries' drug surveillance programs - usually they are simply reported and there is no effort to really establish if it was a 'real' side-effect. Incidence rates of less than 0.25% of users reporting any side-effect probably means it is a coincidence. Amitriptyline is not ototoxic. It may be that some medications might amplify the perception of tinnitus by indirect action but this will resolve when the drug is stopped.
       
      • Agree Agree x 1
      • Genius Genius x 1
    20. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      I'm no expert, but I'm uncomfortable with this attitude when it comes to hearing loss. Hearing loss is not always immediately apparent. If it causes tinnitus then yes we notice it, but moderate amounts of hearing loss probably escape attention... especially if it is in the higher frequencies above 8kHz where many ototoxic drugs apparently begin destroying hearing first. So unless someone is actually applying very sophisticated audiometry to each patient I would tend to believe that hearing loss is massively under-reported as a side effect.

      I've thought about this a lot since neomycin eardrops caused me a big increase in tinnitus, yet doctors seem to think they are safe so long as the eardrum is intact (despite knowing that neomycin is ototoxic). A recognised side effect of long-term usage is deafness(!!!), yet the doctors claim that short term topical usage is safe. Four days increased my tinnitus a lot and I know other people have also suffered similar effects. My belief is that undetected hearing loss is probably quite common with these drops... and probably with other pharmaceuticals as well. Whether or not amitryptyline is one of them I do not know, but I personally prefer Bauman's attitude of vigilance over one of complacency.
       
    21. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Amitryptaline is not ototoxic, I agree, and yet the internet abounds with stories of long-term or permanent tinnitus which did not resolve after drug discontinuation, for Amitryptaline itself, as well as more or less every other psychiatric drug on the market. Many of these reports show up in peer-reviewed research -- I am not including the FDA database as the basis for the claim I am making, because I agree that it is a problematic source of data for the reasons you mention. Such problems are uncommon in that they affect a tiny percentage of users, but that's not very comforting given how massively overused these drugs have become. We live in a world where grieving relatives are routinely being given drugs including antipsychotics after the death of a loved one. It's completely insane, these drugs are not benign.

      I am passionate to the point of vitriol on this issue because I have directly interacted with a large number of many people in my real day-to-day life, who have had their lives upended after being given unneeded drugs by clueless doctors. Don't tell me it doesn't happen.
       
    22. mick1987
      No Mood

      mick1987 Member

      Location:
      UK (England)
      Tinnitus Since:
      08/2012
      Cause of Tinnitus:
      Acoustic Trauma
      Hi @dboy rotten luck with the neomycin eardrops! :( I unwittingly used neomycin eardrops for a week 4 months into tinnitus, only afterwards finding out its highly ototoxic, fortunately for me the eardrops never made my tinnitus worse (intact eardrum), do you think you might of had a perforation of the eardrum that your doctor simply couldn't see at the time? I read that sometimes with external ear infections the infection can cause swelling making it difficult to see whether the eardrum is intact or not?

      But regardless I do think it's unbelievable that Doctors would prescribe extremely ototoxic eardrops, especially to those already suffering with tinnitus!
       
    23. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Hi @mick1987, thanks :). I'm pretty sure my eardrum was intact, but I did have irritation and inflammation in my ear at the time. I'm guessing the skin was compromised and the drug got into my system that way, at a point very close to the cochlea. Cannot be sure exactly what happened.

      The kicker is that when the doctor prescribed the drops I actually asked him directly whether there was any chance the drops would make my tinnitus worse, since I had a previous experience of some other drops aggravating it temporarily. He told me it would be fine. It wasn't. He gets to shrug and get on with his life. I get to have worse tinnitus.

      The story is a little more complicated than that in reality. One of the factors being that the irritation/possible infection in my ear began after an episode of 'ear irrigation' that, again, I questioned the wisdom of and was assured would be OK. And subsequent to the eardrops I got worse tinnitus again as a result of a noise exposure that I doubt would have harmed me beforehand. I think my ear health was in freefall at that point.

      So this is why I tend to have a problem with doctors saying "It is safe" when it might not be. Trusting what the pharmaceutical companies tell you - or assuming that the drugs are even more benign than advertised rather than less - is dangerous in my experience and opinion. And to get back to amitriptyline, this is why I think it is good to have someone like Bauman telling us...
       
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    24. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection

      http://www.harvardhearing.com/audiology-blog/some-drugs-can-cause-hearing-loss/
       
      • Informative Informative x 1
    25. Evian

      Evian Member

      Tinnitus Since:
      02/2015

      I was on the 10 mg pain killing dose on amitryptilyne for 12 years and got T . I have other reasons as well but will never really know the true cause.

      I regret the day I ever started taking it just incase it was a factor.

      Drs and dentists ruined my health
       
      • Agree Agree x 1
    26. Georgia
      Thinking

      Georgia Member

      Tinnitus Since:
      11/2008
      Cause of Tinnitus:
      Unknown
      Hey I feel like that a lot it kind of tingles and vibrates sometimes it basically feels like my body is completely unaffected but my head all around feels affected I guess I can't even work out if its coming from the left or the right side of my head so I'm guessing it comes from all of it
       
    27. mick1987
      No Mood

      mick1987 Member

      Location:
      UK (England)
      Tinnitus Since:
      08/2012
      Cause of Tinnitus:
      Acoustic Trauma
      Yeah its despicable how DR's can give a false sense of security over the safety of certain drugs/procedures, to the price of the patient as you've found out, but what I really struggle to get my head around is why they would take unnecessary risks in prescribing neomycin in the first place given its widly known to cause severe ototoxity if it reaches the inner ear!?.....why not prescribe alternative "safer" eardrops especially when they are already aware of our ear issues?....its just plain ignorant and reckless!

      I was the same, I was prescribed the eardrops after originally seeing the Dr about a possible acoustic trauma earlier that day (bird scarer gas cannon while walking my dog in woodland) and told him i was worried about my T worsening, he even tested my hearing (crudely with a metal prong) before claiming my ear canal "looked a little red" prescribing extremely ototoxic eardrops, the irony....

      I was also prescribed amitriptyline tablets during of a period of tinnitus distress but looks like it was a wise choice staying clear of these drugs!
       
      • Agree Agree x 1
    28. Mad maggot
      Breezy

      Mad maggot Member

      Location:
      New zealand
      Tinnitus Since:
      12/2008
      Cause of Tinnitus:
      Unknown
      I get tingling and vibrating of my head and also a strange feeling like I'm suddenly falling like in n elevator. I also have a horrible sensation sometimes like something hitting me in the back of the head. It's not painful strangely but it's as though someone whacked me real suddenly with a large soft pillow or something and there's no noise but a sensation of a bang!
      My central nervous system is also a bit of a mess and I feel is causing the T because I have nerves that twitch all over my body and cramps in my butt and legs that can become severe enough to twist my feet into weird contortions making it almost impossible to walk.
      I definitely feel there is a lot more than simply T going on.
       
    29. Dr. Ancill

      Dr. Ancill Member Clinician

      Tinnitus Since:
      09/2013
      Clearly, some people don't want to give up what they strongly believe but let's look at the logical conclusion of their position: If all these drugs are ototoxic and tinnitus can occur with both short-term or long-term use, doctors should stop prescribing all these drugs - now what? I would like to hear what is the alternative to antibiotics, antidepressants, cardiac and blood pressure medications. anticonvulsants, anti-cancer drugs, etc.........

      Doctors don't go and kidnap people and force them to take medications. People come to see doctors because they are in distress or discomfort and want treatment. We do the best we can given the knowledge we have. Benefit has always got to be weighed against side-effects. I always discuss potential risks with my patients but who really knows how to evaluate a 1.2% or 0.4% of 4% risk of any given side-effect?

      I have significant bilateral tinnitus and have to take a medication for a medical disorder and this medication has a 2% chance of causing/worsening tinnitus (according to the FDA). Not taking this medication could lead to my sudden demise....what should I do?
       

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