Trying but Not Coping

Hi,

I'm Jo and I have had tinnitus for nearly 11 years now. It first started 3 months after I had spinal surgery, there was a lot stress in my life at the time and I was grinding my teeth at night and heard a snapping noise in my jaw in the middle of the night. I ended up with a permanent facial and head migraine that has lasted 11 years, this in itself has ruined my life and is the source of severe daily pain. At the same time that this happened a low level mid range humming started in my left ear. It was the least of my worries and didn't really bother me.

Over the years I have been on many medications for the refractory migraine and went through years of side effects and withdrawal symptoms. This was after 6 years of being misdiagnosed and being fobbed off on the NHS. I only got the correct diagnosis when my partner got private healthcare through work.

Last year after spending 2 years weening myself off sodium valproate I ended up with another problem which sent me to the hospital and I ended up having another major surgery in July last year. My body went into shock after the surgery as they couldn't get the pain under control. I was pumped full of strong pain killers which was concerning to me as I haven't taken any in years as my neurologist explained it keeps the cycle of chronic migraine going.

10 days after the surgery I realised that my tinnitus had become more bothersome, I could hear it over the telly and it was irritating me. A financial stress happened which sent me into a melt down and the tinnitus became even more bothersome. Then I had a knock in my car and this set off anxiety in me. My partner has had tinnitus for 20 years and suggested we do ear syringing. I was unsure about this and should have followed my instincts but I didn't and we got a home kit. My partner did the water syringe on me and the next morning it all went to hell. The mid range hum turned into a high pitched whistling that made me want to cut my head off.

I have been sensitive to noise my whole life and having this noise in my head 24/7 has been an absolute nightmare. I have suffered from extreme anxiety for the past 5 months now. I can't sleep, if I do it's only for 2 hours at most and when I wake I am covered head to toe in pins and needles that get so strong that my legs and arms go numb. I have lost 20lbs in weight and can't eat. I retch in the morning, have been shaking and crying, have a dry mouth with excessive thirst. I feel terrified most of the time, have panic attacks but more than anything else I feel completely exhausted. Dealing with a permanent migraine on top of this has been challenging to say the least.

I have been to the doctors multiple times. I got an antihistamine for sleep which quickly lost it's effect and had a bad effect on me anyway. I tried nortiptyline and amitriptyline which I have had before but couldn't tolerate and haven't been able to this time around either. I have tried many over the counter sleep aids. I have had reflexology and 8 cranio sacral therapy sessions as I read that a system locked in fight or flight can effect tinnitus and calming the nervous system can have a positive effect on tinnitus?. I have done yoga, gone for walks, tried to keep myself focused on different things but nothing has changed.

I am starting CBT over the phone in a couple of weeks and after 5 months of waiting I finally have an appointment to see an audiovestibular medicine specialist in February.

I am trying hard but not able to cope with this intruder, does anybody have any advice on how I can help myself. Does habituation happen naturally or is it something that you have to work at. What can I do to help myself with this and even though I understand it would be very hard to say, is there a chance the level may go down again? I could deal with it if the tone wasn't so high pitched.

Thanking anyone in advance for any replies I might get.

 

@TiredJo ,
You have been through a lot and need time to get your head in check with your tinnitus and its unwanted emotions.
Keep relaxing music on around you,go at your own pace and off load stress.

Medications can help and maybe a low dose med backed up with CBT will help you.

Try to think of your tinnitus as nothing to scare you and you are safe and loved and your tinnitus sound is blinking annoying.
You are in control over what makes you happy and the sound in time should settle.
Love glynis x

 

Hi Glynis,

Thank you very much for your reply. My partner always puts on relaxing music when he gets home from work and it does soothe my frazzled mind but I forget to do it myself in the day but I will take your suggestion on board.

I'm hoping the audiovestibular medicine specialist will know what to prescribe me regarding the anxiety and insomnia. He is listed as dealing with distressing tinnitus so I'm hoping he'll have some good advice for me and not just tell me to live with it.

I do hope that the sound settles in time.

Thanks Glynis.
xx

 

Hi Jo, and welcome to TT.

There is an excellent webinar with one of our members, Dr. Hubbard, regarding CBT for Tinnitus Distress, which includes information about habituation, types of tinnitus, sound masking and other useful information. Dr. Hubbard, a psychologist, has tinnitus, used his professional training and experience to help himself with T, and is now committed to establishing training for CBT For Tinnitus Distress among therapists to help tinnitus sufferers everywhere. The link is on my Profile Page.

 

Thanks Luman,

I will definitely watch that as I am starting CBT in a couple of weeks. Thanks for the info.

 

Update - I had an appointment to see an audiovestibular medicine specialist a few days ago. I had a hearing test and he said it was fine, they looked at my ears and said they were clear. After listening to what had happened to me he assured me that the water syringe would not cause the spike/change in tinnitus but the stress I have been under did. He recommended CBT which I have already started and is writing a letter to my G.P to recommend a couple of weeks prescription of sleeping pills to get my sleep cycle back on track.

He said that it was a problem in the brain but if I get my sleep and anxiety under control I have every chance of it going back to the baseline level that I had previously. He said there was a 1% chance that there was swelling on the nerve and gave me an SOS appointment (I can phone the number he gave me any time over the next year if I have any concerns/need to see him again/want an mri scan).

It was such a relief and my anxiety about it has lessened since seeing him. I just have to get this 11 year migraine under control now because being in agonizing pain every second of the day is stressful and very hard to deal with. Hard to be relaxed in this state. The tinnitus started when the migraine did so I'm sure it's all linked. Now I am waiting for an appointment at a top headache clinic that has some treatments that are new so keeping my hopes up.

 

Update - So I watched a video on you tube about a guy who had been able to habituate to his tinnitus. In it he shared how he meditated on the noise. By doing so he was basically sitting with the tinnitus instead of trying to escape it. He said he masked the noise for the most part and only sat with the tinnitus when he was feeling brave.

I started to use the headspace app and sat with the tinnitus in silence for 20 mins a day. It was hard at first but it actually felt quite rewarding being able to just sit there and hear it. After about a month of this I have been able to sleep for around 5 hours a night (previously I slept for one hour if that). Being able to sit with it and accept it was the first stage for me. After that came the ability to focus on other things and not notice it as much. When I sit down at night to watch a movie I am aware of it again but it doesn't make me anxious anymore - annoyed yes but not scared.

I never thought I would get to this point. It's been 8 months now and when this first started I was so panicked and anxious that at times I wanted to die.

I don't like it and it annoys the hell out of me when I go to bed but I'm hoping in another 8 months it will be less annoying. I'm hoping that it will get better and better as time goes on. It's been a horrible journey but for people out there who have just been hit by this it does get better. I hope this helps someone who is struggling right now.

 

Hi Hazel,

It was great to read your reply. I'm so glad that I found meditation, I seriously don't know where I'd be right now without it. It was definitely a turning point for me. I know it won't be for everyone but it might help someone who reads this and decides to give it a go. I'm hoping so.

I'm happy to hear that you're coping with it and I'm wishing you the best too.

Jo