Hi Everyone!

I've had tinnitus for 4 weeks now and it has been constant.

A bit of boring background.

I started this term of university on a drug titration for my epilepsy. Since about the beginning of term I had a sore throat and ear pain, especially in my left ear, like there was something in it.

I put it down to drug side effects, as both drugs could cause ear pain and sore throat and a hoarse voice.

After about a month of this, I was home from uni at my step-sons daughters birthday.
The next day I woke up with this really horrible ringing in my ears.

Went to see the local doctor, she said it was an ear infection and gave me ear drops. They didn't work. I got dizzy. Another doctor gave me antibiotics. No help. Then after 6 days whatever infection - throat or ear started to affect the control of my epilepsy. I was given diazepam by the doctor, she said it would help with the tinnitus. It just knocked me out - but that did help. Was helpful in at last getting some sleep.

The doctor also said it would go in 3 weeks.
Went home after 2 weeks off.

I'm studying Pharmacology. I was either zoned out on diazepam or I couldn't concentrate and my hearing had been affected by the amount of pus, wax and inflammation in my ear the doctor back at my uni said. He gave me more drops and an appointment for syringing. As I put the new drops in things got better.

But by now the university decided I am 'prone to infections' due to the medication I am on for epilepsy - had it since I was 3 - it has been no seceret, I should (read that as 'have to' more and more emails from them with more and more people copied in. Starting 'Hi' and 'Cheers' and moving to 'Dear' and 'regards'.) take a year out - which sounds cuddly until you find it is the same as withdrawing. The university never mentioned this.

Went for the syringing. Thought 'great despite all this other crap the horrible noise is going away'. Now I have one grommet - it is in the problem ear. It is from a treatment for patulous eustachian tube syndrome which didn't work. I used to teach swimming. When I did I got a lot of ear infections with the grommets. Never had tinnitus. My hearing is supposed to be excellent.

Never had a problem since I stopped 2 years ago. Haven't really swum either as I knackered up my shoulders and was in physio for a year.

The syringing didn't go well. I've had something similar done by ENT for a bad infection YEARS ago. but without the water. Small hose thing that sucked out gunk.

I said 'ow' once and the nurse refused to go on. As I said, with the drops, it was bearable. The syringing made it as bad as it was in the beginning.

It has been 24 hrs since the syringing and it is quieter and bearable now. I've only slept because I've been too exhausted not too. I'm terrified it gets bad again or that it gets no better.

The doctor says that there is still wax in my ear but the nurse said she could see a bit of my eardrum. In the notes, she put she refused to go on because I could not tolerate the pain and I was getting dizzy (???) she was also frightened she would damage my eardrum.

So far I've been kicked out of uni because they think I have missed too much time and after 4 weeks of this constantly, although it seems to be back to bearable. I'm sitting here awake because I'm terrified if I go to sleep, I will wake up and it will be worse or it won't be any better.

The diazepam and alcohol seem to be the only things that help. The room at my uni halls is so quiet and I have 3 flatmates. I've hardly been able to sleep in the same bed as my husband because the room is so quiet.
He has 80% hearing loss and gets it occasionally.

I'm sorry to be such a moan. My husband and I sacrificed a lot because so many jobs now ask for a degree and I was so close. Also I'm so scared because it never lets up.

I know there are some epilepsy drugs that are meant to help and at the moment they are looking into/testing safer analogs of retigabine, because at the moment the drug produces metabolites that cause blue pigmentation. I think I'd go for the blue pigmentation just now and hey I have epilepsy anyway.

Sorry for the long post.

 

Welcome to the forum. You may already know this. RL-81 seems to be a safer version of retigabine. The treatment section on TT should have much discussion on it. This article may shed some light on it. Perhaps check with U of Pittsburgh on the progress of their work on it.

http://www.pharmtech.com/study-reve...ignificantly-reduce-side-effects-associated-c

 

Yup thanks, already know that. I posted this one from 2015 in the Retigabine thread. Before finding out I was pages away from the end.

http://www.hearingreview.com/2015/06/new-drug-promises-relief-from-tinnitus-epilepsy/

Kind of keep tabs on AEDs especially - goes with the territory.

GW are really going to town with the cannabinoids what with Epidiolex and Sativex.

 

Went to the doctor today and went to a meeting with one of my lecturers about how to go about leaving.

The doctor said my ear looked fine and there was no wax. So why does something in there still hurt a bit?

The sound seems to have calmed down a lot since the syringing. I thought it was just this hiss...which the doctor said is a good sign as it is probably just the fluid inside my ear and I am sensitive to it's movement after everything that has been done.

However, there is a high pitch which I suspect was there before but I suspect I didn't notice so much as it wasn't so pure. I don't know if it is getting louder or not or if it is because I'm focusing on it.

I'm scared to move. It had stopped when I got up. It seems to have done this a few times now, but it gets a bit louder - or more tone/s come in as I move all about the same level but a different pitch.

My husband is picking me up early on Saturday because he is so worried. I can't stand this tiny room that reverberates with this dreadful noise for another minute.

I don't know now if it is getting better or if it is the drug.

I called later on in such a state that the doctor gave me more diazepam. Even though the first doctor only gave me 2 because I said if I had any more I would take them all. Either that or quit taking the seizure meds and hope I go into status. At least then I'd get IV diazepam or die.

I dont know if it is quieter but the high pitch seems to go on forever now and it is so high I can't take it.

I'm so scared it will get louder. Or that the quieter bits are just the drug.

I just about screamed down the doctors surgery telling her how I felt. As 4 weeks in I feel like no one has really listened to me.

It all started with a hoarse voice and sore ears especially the left one. then I got a bit of a cough and the left ear was ringing. 4wks and 1 day ago. Diazepam helped me sleep when it was bad. Now I don't know if it is helping me tollerate it and putting me to sleep or if the tinnitus is actually improving.

I've lost all logic regards the volume. The high pitch, however quiet/loud it may be goes right through me.

I'm scared to take the other diazepam in case it doesn't knock me out till morning.

The doctor wants to see me again tomorrow and has put a referal in for ENT for an X-ray regards the throat problem.
She also gave me a sinus spray as once my ear 'didn't seem so bad' (god, I'm so so scared to even write that in case they get worse), I realised my sinuses hurt and were blocked.

You know, I've read posts like this one in the epilepsy forum that I answer a lot of questions on.

'Please don't let me have epilepsy, I'm so terrified. I don't want to be on drugs for the rest of my life. The seizures terrify me.'

The posts are asking for help to people with the condition. Often before diagnosis. There are a lot of pretenders to the throne of epilepsy.

Thing is my epilepsy doesn't bother me I've had it all my life and I'm well controlled.

This morning I told the doctor three ways I had thought of already of killing myself and told her I had a toxicology textbook with a lot more so it didn't really matter what drugs she wouldn't give me. I'm studying/was studying the right/wrong subjust.

Today I also found out the philosophy module that the university were kindly going to let me finish. Well if I reapply, and IF I am accepted back I will have to attend the classes again just not submit the assignments.

Oh god I think it is getting louder but I'm loosing all reason and logic. I'm stuck in this room with this awful high whine, I only hope and think is quieter.

I cant remember when I last ate. I'm frightened anything will make it worse.

 

An adverse drug reaction almost ruined our marriage back in 2012. Now I'm so scared this will.

My husband says if I carry on like this I'll be sectioned.