Scared, Anxious, Not Coping, ENT Not Listening

[tychobrae]

I'm really scared now after reading the paper in Molan's post which says that PT can lead to stroke, and about the detailed tests needed to find the cause. After seeing an unhelpful ENT (again) who ignored the fact that I also have a lot of pain with my PT, and who said my MRI was fine therefore all they can do is mask it, I just don't think that MRAs, MRVs and all the other tests that I have seen mentioned are available in the UK. Also my PT is a loud beeping, not a whooshing so I'm thinking there must be something unusual causing it.

I have been suffering from depression for a year and a half and am already anxious about other unrelated tests for a potentially serious condition. I don't know how to cope with this anxiety on top of the noise (I also have 'normal' tinnitus) and everything else. I can't sleep even with medication and my GP keeps giving me antidepressants which have tinnitus listed as a common side effect so I don't take them. I would be really grateful for any support or thoughts.

 

[Justme]

I'm so sorry to hear you're having such a rough time with this. It seems like nobody can point to an ENT that was of any use to them. I just have your garden variety T and only for about a month now, but it has definitely made its impression on me. I can only imagine what you've been going through.

I can't offer much except, as corny as it sounds, I have learned that the world keeps spinning and life goes on. I think it helps to remember that we have to live for whatever happy moments we can wring out of every day, even if they are the simplest pleasures. If we try hard enough, we can usually find some comforting thing to cling to. It works for me, anyway.

Have you explored, with your doctor, the availabilty of any psyche meds that are not known to contribute to tinnitus? I have to beleive that there is something out there. After T, I had another medical issue come up with only one useful medication available. Guess what one of the side effects was? Sometimes, its hard to keep a sense of humor about it, but what else can we do? Good luck to you.

 

[Laura89]

Hey tychobrae, I also have PT unilateral right sided . Im sorry to hear you are going thru this, on top of everything. I send you hugs.

I saw an ENT over a month ago, and he was of no help, said I was going to have to get used to live with it. Of course I was not going to settle, I got a MRI and now I am going to see another ENT tho I know this is NOT an ear issue, I will try to get this person to refer me for an MRA/MRV. I was also referred to a neuro, but that takes ages here in Canada. Do not give up on your journey! You will not have a stroke, many causes for PT are not life threatening just super annoying.

I recommend you to visit Whooshers.com and also join their Facebook support group. Recently several people have found the cause and are on their way for treatment. And also some people in the group mention that their PT is high pitch not like a whoosh so don't feel alone in that aspect either, mine is a whooshing sound though.

Is there anything that makes it worse/better? (movements/physical activity)
Are you able to stop the PT by pressing your neck?
Do you have any other symptoms? (I have some pressure on that side of my head)
Can you mask it?
Do you have silence sometimes?

There is also another lady here Karen, she has PT and T, she's a total sweetheart and I think she would be happy to share her experience with you too.

Try to relax, I know its not easy, but its the best you can do for your body right now. I was very very distressed, crying all the time, had to take a leave of absence from university, couldn't sleep, couldn't eat. But things get better, you start getting used to it, just like T.

Also, MRA and MRV are done with the same technology as MRI's, so yes they are available in the UK, in many cases those tests are done at the same time as the MRI. Like I said, there is hope, take warm showers, try to mask it if possible, be gentle with yourself and remember you are not alone.

(L) Hugs

 

[tychobrae]

Thanks for your replies, and for the hugs. Laura89, I do have other symptoms; there's a lot of pain deep in my ear/throat and I've also had two attacks of vertigo recently (new to me) but the ENT consultant wasn't interested. I've always found the lack of interest of ENT's in relation to tinnitus hard to understand and especially with pulsatile tinnitus, since it can be life-threatening.
Justme, my GP knew when he prescribed the latest meds how reluctant I've always been to take anything with tinnitus as a side effect so I don't understand his prescribing this one. I called and spoke to him about it but he basically said either take it or don't, it's your decision. He didn't offer an alternative. I feel so frustrated and alone with this. I was already feeling suicidal with the depression before the pulsatile tinnitus developed.
Seems this forum is the only place where anyone really listens.

 

[Karen]

Hi, @tychobrae,

I'm so sorry you're having such a difficult time right now, and I understand what you're going through. I, too, have pulsating tinnitus (right ear only) as well as regular tinnitus (a high-pitched hissing tone). Mine isn't really a whooshing sound, either. It's more of a drumming sound. I've had these symptoms for almost exactly four years now, and I want you to know that things will get better for you.

As Laura suggested, it might be a good idea for you to check out Whooshers.com, and join the closed Facebook group for Whooshers as well. You'll find a lot of supportive people there who share their stories, and many people who have been cured, as well!

Back when mine first began, I experienced vertigo a number of times, and it caused me to think that I might have Meniere's disease. As you probably know, one of the symptoms of Meniere's is vertigo, and it was very frightening. But, after going to more than one ENT, and three neurotologists, I was able to rule that out. I haven't had the vertigo for quite some time now; it finally subsided. So far, I've had a CT scan (without contrast), an MRI/MRA with contrast, and a Doppler of my carotid arteries, and nothing unusual was found. I decided to give myself some time to see if the pulsating would subside or go away before I had any more tests. So far, it has not gone away, but it has subsided somewhat and/or I've gotten used to it. I am considering going to another doctor for more tests; the next test will probably be a CT scan with contrast (called a CTA).

Where should you go from here? Well, first of all, don't worry; it is very rare that PT is caused by a blood clot. There are many causes for PT, and most of them are NOT life-threatening!

I agree with you about being cautious of the drugs you take, as some of them can make tinnitus worse. Instead, I've been using natural supplements. For calming (anxiety), you could try: Holy basil, pharma-GABA, or reishi mushrooms. I used all of these for awhile, and they got me through the extra anxiety without resorting to drugs.
For sleep and calming, you could try: Magnesium (I use magnesium chloride tablets), melatonin, herbal teas, such as SleepyTime, or Chinese herbs (I use An Shen Bu Xin Wan).

Next, you might try scheduling another appointment with a specialist. I don't know how difficult it is for you to do that in the UK (I'm in the U.S.), but I've heard good things about Addenbrooke's Hospital from people in the UK.

And please do come here for support at any time. We're all on this road together, and I'm still searching for answers just like you are. I wish you a calm day!

Best wishes,
Karen

 

[SoulStation]

I would try some of the anti depressants your doctor recommends. I gave up taking Lexapro for a month because I saw that it was had T as a side affect. But I did further research and found that only 1%< (less then) of people reported it as a side affect. So I went back on a small dose 10 mg or less, and my quality of life is significantly better. I still hear some t in quiet environments, but I can enjoy the rest of life more.

 

[tychobrae]

Karen and SoulStation, thank you. I'm waiting to see a more senior ENT so I'll have to wait and see how that goes, but it's likely to be a month or two away. My whole head is ringing with PT today, it's SO loud, but I'm seeing my GP in a couple of days and I intend to have a good discussion about meds with him. The meds he gave me list tinnitus as a common side effect (1 in 10 people) hence my anxiety about taking them. Karen, thank you for your lengthy reply and the natural remedy suggestions, I'll look into them. It helps just to know that there are people listening who understand.

 

[UserID]

One of those magical moments that brought more hope to me is when I learned a relaxation technique. It's a simple one, and once adopted and used of a regular basis, say three times a day, you get better and better at it, and the benefits are there to resource in an instant. It's less relaxing initally. The process takes time to perfect, then suddenly one day you'll find yourself able to turn it on and off as often as you need it.

I call it "letting go." It's a marvelous technique worthy of a Nobel prize in my opinion. You begin by tightening your calves for a few seconds then letting go of that tightness. Next, tighten your thigh, and let go; then your stomach muscles, and let go. Each time you work your way to a next set of muscles allow my mind to memorize the feeling of letting go. Then once you've done all those steps, ending at your neck and shoulders, lay there and tell your entire body to let go. Release the tension from every part of your body. Do it all at once. Take it from me, you can learn this.

You do this process enough times, eventually you will no longer need to take those first steps, going from the calves, to the thighs and upward. You'll instead be able to merely sit or lie down and tell your body to "Let go" of all the day's tension in an instant. I've been using this technique for at least a decade now and it truly is a miracle that you have on hand anytime you need it.

I took a second just now to do it, to tell my body to "Let go!" and sure enough, every part of my body responded and began to relieve itself of the stress I've been holding on to all morning long. I do this whenever I feel stress may be coming on, or has hit. For me, it has become another one of those pieces of the puzzle. I've seen far too many folks go in the opposite direction in the hospital where I work, not knowing how to let go of the tension; instead, they slide into panic and near hysteria.

Learn this technique and you will discover a part of yourself that has been there for all these years that you never realized was at your fingertips. David