He has coped with it very well up until recently. The nature of the attacks appear to be changing. He has been ill now for 13 days straight and there seems to be no let up. He suffers terribly from screaming tinnitus, has a severe headache as a result, cannot sleep despite being prescribed diazepam, has an upset tummy and is very unsteady. We are both frightened and my husbands mood is very low. Last week his specialist gave him the steroid injection in his ear, which in the past has helped....but this time has had no effect at all. My husband has his own building business but works alone so when he doesn't work we have no income. It also results in loss of clients. Is there anyone out there that has had a similar experience and that can offer a ray of light?
Hi Angie. How awful for your husband. I was diagnosed 2 1/2 years ago and my attacks too have changed. At first they were very severe and lasted about 5-6 hours. When they returned a few months later they were less severe but lasted for a whole day. Recently they have returned again. Once again less severe than before, but this time I have had a whole month continuous before the symptoms started to calm down. At the moment I am feeling ok - but for how long, no-one knows. The hospital can't explain this change either
Hello - that sounds terrible. Is your husband on betahistine? I just know that by doubling my dose 3x day (32mg x3) my tinnitus subsided and so did the off moments we all get. It cd b im in a non active phase and a cluster is round the corner. But chat to the ENT about increase betahistine maybe?
hi there,
so sorry to hear that your poor husband is having such a hard time. i have no words or wisdom to help your husband. i know how he feels, i had such a time at Christmas, from Boxing day to New Years day i did not know what to do with myself. at the time i had no idea about Meniers as i had not been see by ENT only my gp. i felt so helpless and my poor husband was just as confused as myself. not understanding why i could not eat for feeling sick, could not walk in straight line for the inbalance, the tinitus was the only part he understands as he has this himself.
all i can say is stay strong for him and give him plenty of hugs.
kind regards
janet
Hi Angie
I myself have had meniere's for the past 5 years and last year I had a grommet fitted in the ear affected and didn't have an attack for 12 months. They are only temporary and recently fell out and I started to have attacks every day up to 3 sometimes for 6 weeks. I am now on water tablets which are working only had a few dizzy spells. But I'm also awaiting for a T bar to be fitted in my ear drum which can last up to 5 to 7 years. Hope this helps hun!
Thanks for your reply Tanya. Your situation sounds very similar to my husbands. From what I can gather Ménière's disease seems to have 3 distinct phases. I think it's the uncertainty that is so scary. But it has helped just knowing that there are others out there that can identify with what my husband is going through. And I guess it's about really enjoying the times when you feel ok. We just have to hang on in there. Thinking of you. X
Thank you Angela for your comments. Dave is on 16mg x3 a day so there is obviously an opportunity to increase the dosage to 32mg as you have said. I have now made an app with our GP to request this. Without your message I wouldn't have known to ask. I think if the tinnitus subsided, my husband could get some relief as the noise is screaming and he suffers a constant headache as a result. Thank you so much and I wish you all the best too. X
Thank you so much for your response Janet. It sounds like you're going through he'll too and I'm sure your husband feels as I do....scared and helpless. I do hope you get a handle on this and can regain some control. All the best. X
Thanks so much for your response Louise. It sounds as though you've had some really proactive treatment. Dave has just been given the water tablets too (last Wednesday) but as yet has not noticed any difference. The ENT specialist wants to see him in 6 weeks to reassess him. I am going to ask about grommets for him. What is this T bar that you're hoping for? Would this help with tinnitus? I don't know about this treatment. The problem is there are so many treatments that are advertised that when you research them, they don't seem to be effective. I just want my husband back. I will take your suggestions with me to the app. Thanks so much. X
Hi Angie
A T Bar is similar to a grommet but on a bigger scale and lasts much longer than a grommet which mine lasted 12 months. There is no permanant fix to this condition just a temp fix. As well as the water tablets I also take betahistine and sickness tablets as well. It has not stopped the attacks completley I'm having 1 a week atm...lasting from 5 minutes to 5 hours. Regarding the tinnitus I wear a hearing aid in my affected ear and that does mask the tinnitus, but I've had it that long I don't always notice it unless it goes on a high pitch mode but I just turn the music up..lol! It's just finding coping mechanisms to be able able to deal with it.
Regards
Louise