Acceptance of Pulsatile Tinnitus

Discussion in 'Support' started by Scared111, Nov 28, 2016.

tinnitus forum
    1. Scared111

      Scared111 Member

      Tinnitus Since:
      6/2016
      Cause of Tinnitus:
      Unknown
      How long did it take for you to accept the pulsatile tinnitus?

      Feel like I am having a hard time accepting it. Though I am still searching for answer.. Dr rec a neck to temporal CT angiogram. Not sure what the difference between that and a cerebral angiogram as another doc rec that but others say it was too invasive.

      Having a hard time dealing esp since I still have young kids to take care of. How do you guys deal?
       
    2. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      A lady who comes the tinnitus group uses hearing aids and takes a small betablocker and is doing better after feeling suicidal at the beginning . ...lots of love glynis
       
      • Helpful Helpful x 1
    3. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      I have unilateral pulsatile tinnitus, as well as regular tinnitus in the same ear (right ear). Right at first, I could not sleep, cried all the time, and had a great deal of anxiety. However, after many tests and therapies, where nothing was found, I finally learned to accept it.

      What helped me most was to learn how to be calm, and to distract myself. I can now function normally again, although I do sometimes have trouble sleeping. What has worked best for me is to keep busy during the day, and to relax and stay calm at night. I don't take any medications to keep myself calm. Instead, I take magnesium glycinate about 1 hour before bedtime. Sometimes, I take a very small amount of baking soda (1/4 to 1/2 tsp) in a glass of water. Both help me get to sleep without drugs.

      I wish you well, and hope that your doctor is able to identify a cause for your pulsatile tinnitus. But if not, it is possible to acclimate to it. It just takes longer to adjust to it than it does to regular tinnitus.

      Best wishes,
      Karen
       
      • Agree Agree x 1
    4. volsung37

      volsung37 Member Benefactor

      Tinnitus Since:
      2014
      Of all the types of tinnitus I find pulsatile the hardest to deal with. Perhaps it is the constant reminder of our own mortality through each heartbeat.
      I get it periodically now and again although I had it constantly for 8 months then it disappeared for over a year. Now it raises it head mostly at times of stress. I find the easiest way to get through is to take a sleeping pill. Usually this calms everything down for a week or so then it will reappear.
       
    5. Scared111

      Scared111 Member

      Tinnitus Since:
      6/2016
      Cause of Tinnitus:
      Unknown
      What kind of sleeping pill? It's good to know that it can actually disappear. I don't feel the pulsing part of it. Just a wo wo sound that's loudest when I bent down. Probably due to more blood flow. Yes you are right about mortality. I think subconsciously that's what's frightening and sends me in panic sometimes.
       
    6. volsung37

      volsung37 Member Benefactor

      Tinnitus Since:
      2014
      @Scared111 I take 50mg phenergan or promethazine. This usually gives me a good long sleep. When I awake the PT is usually gone or much diminished. It can disappear spontaneously. I think mine is due to long-term inflammation although I have never been given any real diagnosis of my T by doctors.
       
    7. DirM
      Pensive

      DirM Member Benefactor

      Location:
      San Diego
      Tinnitus Since:
      July 11, 2016
      Cause of Tinnitus:
      TMJ/TMD
      Actually it's the opposite for me - I choose to look at hearing my constant heart-beat as confirmation I am alive and going. And with my high pitch, it actually sounds a lot like a hospital heart monitor!
       
      • Like Like x 1
    8. volsung37

      volsung37 Member Benefactor

      Tinnitus Since:
      2014
      Comes down to perspective. Guess I might be a glass half empty guy :/
       
    9. AuntSally

      AuntSally Member

      Location:
      Scotland
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Not sure
      I know how you feel. I also have pulsatile tinnitus. I had ordinary tinnitus back in june, just in my right ear. When the ordinary tinnitus subsided a bit I noticed pulsatile tinnitus in that ear. In august I developed a high pitched pulsatile tinnitus in my left ear, which can be piercing. i am trying to cope but I am finding it very difficult to deal with, this constant beating in my head. @Scared111 how are you coping?
       
    10. Scared111

      Scared111 Member

      Tinnitus Since:
      6/2016
      Cause of Tinnitus:
      Unknown
      Mine is higher pitch but not that high. It's been five months for me. I try not to think about it. Most ambient noises mask it if I don't move around or bent down. But somehow the sound vibrates in my ear when I move and I can hear the rush of blood when I bent down. I am still trying hard to accept though I do have a cta coming up to check for vascular abnormality. I had seen dr Shapiro in ny . He rec a cerebral angiogram but my husband refused as there is a small risk of stroke. And we have three young kids. Right now, the most annoying thing is letting go of the anxiety and sleeping. I am afraid of addicting to the meds or making the tinnitus worse so not sure what to take. Part of the whole thing is the fear it ll get worse and not knowing exactly what's wrong with me.
       
    11. AuntSally

      AuntSally Member

      Location:
      Scotland
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Not sure
      It is a low point for sure I know. Each of us finds our own path and way of coping through these rough times. Antidepressants are there if we decide we need them. And yes, are willing to take the risks and side effects that go with them. It's difficult. My own jury is still out on that, since it's only been five months but I haven't ruled them out. Sometimes though I think the worst edge has gone off the anxiety in general. It waxes and wanes. But I still panic, especially when I wake up to T after forgetting about it in my dreams. And seem to manage four or five hours sleep now, mostly. Occasionally I take an over the counter sleeping pill. It's called Nytol here. And mostly i take heart from other people's stories and experiences on this and other forums. Try and avoid the scary negativity. There's lots of that too.

      Good that you are seeing a good doctor with a good reputation in US. I am in Scotland and have to rely on the lottery of the National Health Service. Not that I'm complaining. It's free! But you have to take what you get. I'm due my next ENT visit in a couple weeks. I have had a MRI but I know there are other tests to be done. Though like you I would avoid anything invasive and risky.

      Maybe things will settle or clear up given time. Sometimes they do. Nothing is impossible. I read about someone today whose T diminished from loud to a liveable level over five years.
       
      • Good Question Good Question x 1
    12. James
      No Mood

      James Member Benefactor

      Location:
      California
      Tinnitus Since:
      Pulsing 03/2013
      Hello @AuntSally

      I take a low dose 7.5 mg of antidep mirtazapine. At first the stuff put my body in a deep sleep. That's kind of like what I couldn't do myself. I needed that, to sleep-deeply. Its not a cure for PT, but it helps me get up for another day of, anyone for lunch? If I get any anti-depressant effects from a small dose, I'll take that too. I got other issues going on now.

      Back to your initial question, how long does it take to accept PT. It takes a while. Forget the first year, that a tough one. It takes a second if you can forget about it? I'm joking. It's longer than we want. Iv'e gotten better, dealing with it. I started 2013. A routine everyday helped me. For all of us, good health and Happy New Year Holidays, lets move forward living with T and doing it with class.
       
      Last edited: Dec 2, 2016
      • Like Like x 1
    13. Mikie_Mike

      Mikie_Mike Member

      Tinnitus Since:
      4/2016
      Cause of Tinnitus:
      Viral Ear Infection/Prescription Drugs?
      Hearing aides helped me a lot ... I have widex zen and keep the zen tones on all the time. If there's any noise I can't hear the tones, but if it gets quite, it distracts me from the tinnitus. It's rather soothing. To be honest, it doesn't bother me as much as it use to ... but it has gotten softer. Sometimes I eat something and it spikes, so I have to wait until it calms down.

      I got my pulsating tinnitus from a being floxed with Cipro/prednisone. It might be tied into my thyroid gland because I started taking iodine yesterday, and it actually stayed softer most of the day ... but didn't completely go away. My energy level when way up too! People who have been damaged by Cipro often have Thyroid issues. I'm getting my Thyroid checked Monday. Oh, and for Thyroid issues Iodine is suppose to work better if you add Selenium, so I have that on order from Amazon. It's claimed that Iodine also helps remove heavy metals, etc. Anyway, we'll see how it goes.
       
      • Like Like x 1
    14. Fungus
      Dreaming

      Fungus Member

      Location:
      Wild, Wet and Wooly Wales
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Virus?
      Pulsatile tinnitus intermittently in both ears and high pitched 'hissing' tinnitus 24/7.

      I would say...yes, you'll get used to (habituate to) the PT just as well as to the other types, but, as others have said, it takes time )longer than any of us would like, but you WILL get there. The more that you can ignore any tinnitus (better than making a positive effort to fight it), the more that it becomes a non-issue.

      Try to see PT as a reassurance that the heart is beating normally and blood is arriving predictably in your brain....that can't be a bad thing.

      James .....I think mirtazipine probably is a good drug, but I developed late anaphylaxis due to it and nearly died, so it's not for everyone.

      I have white-noise-generating hearing aids and found them very helpful for the hissing tinnitus. Over the last couple of weeks I've used them a lot less....I am just so used to my tinnitus it really doesn't create too much grief for me any more. But for those reading this who are thinking 'smug whatnot', I initially developed a depression severe enough to need hospitalisation for 10 days. So, if it feels bad now....well, my experience says it definitely WILL get better.

      Fungus
       
      • Like Like x 1
    15. AuntSally

      AuntSally Member

      Location:
      Scotland
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Not sure
      Hello @Fungus thank you for this. I am still new to tinnitus and pulsatile tinnitus and still seeing ENT. It's uplifting to hear you got used to it. In my lowest times I think PT Must be harder than other T Sounds but I see it can be done. Did you ever discover the cause? On my MRI it showed I have a few "vascular loops" so if there's inflammation I'm wondering if this is the cause. Maybe things will settle a bit in time. ??? Who knows?
       
    16. Fungus
      Dreaming

      Fungus Member

      Location:
      Wild, Wet and Wooly Wales
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Virus?
      AuntSally I think inflammation is almost certainly the cause in my case. When I have viral infections, my sinuses are blocked, or after the two surgeries on my ears, the PT has been much worse.

      It's likely that your PT will ease if the cause is inflammation, and, if not, you will get used to it.

      Good Luck,

      Fungus
       
    17. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, @Fungus,

      I was wondering if you've ever tried taking systemic enzymes, since you think the probable cause of your PT is inflammation?

      I've heard that they may help people who have inflammation. The one I've read about is WoBenzym. I tried taking systemic enzymes for awhile, but they didn't work for me, because I have a different cause.

      Maybe they would help you (?)

      Just a thought!

      Best wishes,
      Karen
       
      • Informative Informative x 1
    18. Fungus
      Dreaming

      Fungus Member

      Location:
      Wild, Wet and Wooly Wales
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Virus?
      Karen, no I haven't. I've not heard of WoBenzym, but will research it now.

      I've got a bit of an odd immune system. I used to be anaphylactic to wasp stings.I underwent immunotherapy, but couldn't go up to the higher doses as I developed large blisters near the injection site (which the allergy doc said he'd never seen before). I also develop huge hand swelling to something in the garden....I now wear very thick rubber gloves. I had late anaphylaxis to mirtazipine and have had lots of other weird reactions to stuff over the years. NO asthma or eczema, though.

      Maybe my gummed up Eustachian tubes are all down to an allergy, but, I'm game to try alternatives (have tried quite a lot already!)

      Thank you.
       
      • Like Like x 1
    19. AuntSally

      AuntSally Member

      Location:
      Scotland
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Not sure
      Me too. Thanks Karen.
      I also tend to have extreme reactions to meds and other stuff. And I do have lifelong eczema ocassional athsma and inflammatory conditions. I know ibuprofen is supposed to cause tinnitus but I wonder if some kinds of tinnitus might be helped by it. A bit scared to try.
       
    20. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Since you are both sensitive to a lot of different things, it would be best to start slowly, if you decide to try this or any other supplement.

      I am rather sensitive to medicines myself. I think that's what caused my tinnitus to worsen -- mine got worse after taking a blood pressure drug. I had a lot of horrible side effects from those drugs, and some people seem to be able to take them without any problems at all. As for me, I'm better off taking natural supplements!
       
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