New to Tinnitus Support Groups

[NurseJackie]

Just introducing myself. I was around 47 when my tinnitus started. Wanted my entire life to be an RN. Met my partner who is Swedish and eventually moved to Sweden. My life had really reached that high point. I got my BA in nursing and have a great life here. I was out mountain biking just after I had graduated and crashed. I had à helmet on, but my head hit the ground so hard that the helmet cracked. I got up and went home à little sore but otherwise seemingly ok. About a week later the ringing started. At first it was mild but eventually it got so loud that i literally felt like my brain was electrified, it was absolutely driving me nuts.

Been through the works, the doc appt's, tried a lot of different strategies. In the end, nothing has worked that well for me. Sobril dampens it on those occasions when i feel like i have just had enough. Certain noises are intolerable, specifically the rustling of plastic bags. I cant open a bread bag, it makes my t roar. I limit benzos because i am well aware of the risk for addiction as a nurse. Not only is there the addiction factor but the nature of benzos is the tolerance. If you use too much too often it takes more and more to get any benefit from them.

My sleep is screwed, my once active social life is all but gone because exposure to any loud noise or loud conversation makes it so much worse. And of course, in the end when they cant find anything concrete to explain it, the questioning of your mental state begins. My mental state is fine but when my ears are at their worst it is tough to deal with without sometimes just breaking down and crying out of pure frustration.

It's a high pitched 9800 hz ringing. Sometimes i barely notice it and sometimes it just screams. Some days are complete hell and others blissfully silent. The worst part is not knowing why some days are bad and others are not. I dont know what is left to try anymore, ive tried a lot. I cant even say with certainty that the bike accident caused it. I found this forum and i came to read about others who suffer with this.

Thanks for having this group. Looking forward to reading others experiences and strategies for dealing with this nightmarish problem.

 

[PortalNaut]

Sympathies. My T is around the same Hz (but varies day to day) and also I have some mild and higher days.

I can imagine the bike accident was the proximate cause. There are others who have had delayed onset.

T is a miserable condition and there are days that tears may come, but you know that the T is transient and better days are ahead so keep your hope up.

 

[Greg Sacramento]

@NurseJackie It appeared you got hyperacusis and acoustic shock disorder. ASD should be gone now. Besides hitting your head, did you hurt your neck or jaw? Concussion tinnitus can go away, but it can takes years. Over three years the rate of recovery is slimmer. Have you used a treadmill? This pumps oxygen to the brain and that is ready needed for any recovery.

 

[John CC]

Hello Jackie It seems to me like an oxymoron, welcoming someone to a site devoted to Tinnitus, something no one wants, but which we live with. With that said, welcome. I too am new to this forum and I am relieved you have found it. I have found it to be an excellent source of information, and importantly support. Everyone knows what you are going through, and you are not alone, you have support at this site. There are others who regularly read, support and answer your questions. Just realize that this site is a world wide site, so if people do not respond right away, it is because they may be on another continent. So when you look for responses and your thinking, only 1 reply, give it some time.

The most upsetting time for people with tinnitus is the not knowing what is happening, what is next, will it get worse or better, cure, how long will it last, all good questions. While there, as of yet, is not a medical cure, there is lots you can do to help yourself. The first, as hard as this is, is to breathe and realize it can get better, and if you cry, well that is natural too. You are not the first to be this upset, and it is perfectly human. The best antidote is called hope. It is a good thing, but it can also be very hard to see at times. Your life was going along great, like so many people including me, and then bang, this happens and everything seems to stop. Hold on to that man in your life, get the hug you need, and pull on that inner strength of character that I have known nurses to have. You know the sympathy and support at the right time that you so freely give to your patients, now is the time to give it to yourself, and see down the road. T can get better, you can acclimatize, take steps to protect yourself and minimlize it's impact. It is not easy to see at times, but it is there. I am living proof. This forum that you found, I found, and by reaching out and reading I got to see a different picture and possibilities while in the middle of the darkness of T. You can too.

I encourage you to read the posts in the Introduce Yourself and Support sections. Read the questions at the start of the post that are similiar to the questions you have, and then read the responses. This may help you gain some insight into some of the issues and aspects of tinnitus. From what I have started to learn is that, especially at the start, is that loud noise = bad (so at the start listen to your music at a lower volume and movies can be loud so be very wary), ear protection = good, invest in good ear plugs or ear muffs, being aware and not letting your guard down, e.g., going into a loud restaurant or coffee shop without ear protection and thinking it will be ok = not good, realizing and having and believing in your future and hope = good. Coffee Girl, Bill B., Fishbone, Micheal L. and Glnyis among others have a lot of good ideas, and more experience than I do.

Best of luck, I hope this helps.
John CC

 

[Greg Sacramento]

Sometimes i barely notice it and sometimes it just screams. Some days are complete hell and others blissfully silent. The worst part is not knowing why some days are bad and others are not.

Jackie, this would probably means that your just having some post concussion neuroexcitation from glutamate. Since you have periods of silent you should see full recovery as being excellent regardless for how long you had tinnitus.

The reason some days are better than others is because naturally you are receiving more oxygen to the neuron fibers within the brain. I would talk to a physical therapy doctor and ask him for approval on treadmill use to increase oxygen flow to the brain. The treadmills were often in use for this reason at a hospital where I worked. Treadmills are also used by the NFL. I wish you the best and I'm glad as it doesn't seem like your neck is involved.

 

[NurseJackie]

Interesting regarding your comments about the neck. My t is provoked or made briefly louder by turning my head to the extreme right or left. I do some upper neck exercises that seemed to help somewhat. Have not really tried the treadmill except to warm up before training, which i honestly avoid because the music is too loud at the gym.

One recent development is that my doctor believes i have Parkinsons. Im waiting for neurology to confirm that. A lot has happened since this wretched noise started three years ago. Tinnitus does not appear to be a symptom of parkinsons and yet have read that many parkinsons patients have it. Three years in with this horrible noise and i am still not sure what the heck happened.

I totally went through a phase in the beginning where i wondered how in the hell i was going to survive it, now i just cry like hell when i need to and just take it day to day. My biggest frustration is that i work as a nurse on a general psychiatry unit and all of those talks with my patients and by the end of the day, doing what i love makes my head scream. Thanks for all your wonderful comments. I have a feeling im going to be doing some reading about others and hanging a lot here! You all seem like really great people who also have a story to tell. Sometimes it feels so much better knowing you arent alone in the middle of this noise.

 

[Greg Sacramento]

@NurseJackie

Tinnitus does not appear to be a symptom of parkinsons and yet have read that many parkinsons patients have it.

True, but concussion could lead to Parkinson's disease, but it's rare. As you know Parkinson's involves not getting enough dopamine.

Any minor dissection of a cervical blood vessel by hitting head could cause complications similar to either a stroke or Parkinson's. That's very doubtful as your ringing would most likely have started immediately. Also your blood pressure would be high. I also doubt this because your neck would be painful from upper neck exercises.

It would be hard to say if any of the cranial arteries that run though the brainstem to the brain is a cause, but I kind of doubt that too. If your upper c-spine had injury, 87% of the time the jaw begins to have problem. I question if you have Parkinson's but I'm not a doctor.

My t is provoked or made briefly louder by turning my head to the extreme right or left.

I think now that one problem may be soft neck ligaments. If neck therapy helps to lower your T temporary then your SCM muscles are probably at play. The SCM muscles would cause T to be provoked briefly by turning head in both directions.

Have you had hearing tests? X Ray on neck? CT or MRI of neck? I assume that you had a head MRI.

One or maybe most of your problems just may be neck soft ligaments, since you have days where T is lower.

Let us know how about the tests results and if neck therapy starts to give more days of relief.

 

[Tinniger]

Sometimes i barely notice it and sometimes it just screams. Some days are complete hell and others blissfully silent. The worst part is not knowing why some days are bad and others are not. I dont know what is left to try anymore, ive tried a lot. I cant even say with certainty that the bike accident caused it.....My t is provoked or made briefly louder by turning my head to the extreme right or left..

There are similarities with me. I also have better and worse day. And I am not sure, too, whether noise was the cause.
And I can provoke a loud tone in my left ear by turning my head left or right.
A question: Are both ears (sides) affected?

 

[NurseJackie]

Yes, its both ears. As for the parkinson, i have it on both sides of myfamily. They didnt suspect parkinsons because of the T, i developed a right sided tremor with distinct cogwheelsyndrome. The neuro referral is mostly to rule out MS. I just wondered if there could be any connection.

I have had a ct but that was mostly checking for skull trauma. My hearing was checked and although i personally dont think i hear well there was no hearing loss. No one has really looked closely for neck related causes except to say that i am slightly crooked and have bad posture, which i am working with.