no quality of life!!
Posted , 7 users are following.
Hi I am hoping for some advice on Meniere's. I was diagnosed by gp in august last year and still awaiting Ent appointment but this is now driving me crazy. At first the worst part was the tinnitus as the Betahistine was helping with the dizziness and vertigo but now I am so tired I can't open my eyes in the morning and have to force myself to get up to go to work etc. Luckily I only work part time-3 days but last week i just couldn't go in. I was in such a bad way, couldn't open my eyes, was trying to drink coffee to wake me, vertigo dreadful and gave up and had to ring in. I'm going to lose my job if I'm off sick again so my manager allowed me to take a day in lieu hours. Today I had to go for a blood test to see if I'm anemic again and again I couldn't wake up, but forced myself to get dressed and bounces my way out of the door. I was ok driving but am now starting to worry about that, but once out of the car I was all over the place and couldn't wait to get back to bed. I love my job and could not afford to live on benefits but I'm now starting to think that I may have no option. The last few weeks have been horrendous and I'm worried I am not going to be ok for work tomorrow.
A friend mentioned diazepam, so I have looked it up for use in Meniere's and have read quite a few positive comments on it changing peoples lives!! The only thing they didn't mention was the dose, so I would like to know if anyone else takes it and how they have been and on what dose? I'm not enjoying life one bit at the moment and just want to stay in bed all the time, which is getting me and my family down, just want to be able to at least function!
Thanks in advance.
0 likes, 26 replies
NeddyO sandy67
Posted
You should have an ENT appointment by now - no more than 18 weeks after referral. Pester the hospital appointments team and your GP - it will be an outrage if you lose your job. IF you have any doubt about your fitness to drive Dont - you could lose your licence. Check the HMRC advice pages as well as the Meniere's Soc FAQ's
I suspect you are not on enough betahistine. I was started on 16mg tds which helped with tinnitus and hearing loss but did not stop acute attacks. Consultant tripled the dose which brought about complete control although I am left with low level tinnitus and hearing damage. TRy to get your GP to increase the dose till you see the ENT.
Best of luck.
sandy67 NeddyO
Posted
Yes I've read a lit that 3 x16mg is the beat dose but till I see specialist doc won't prescribe. Referral was put in in august and I rang appointments in sept, they said the hospital had an obligation to write to me with appt by mid October, never heard, phoned and was told I wasn't in the system and to ring appointments again. This time was told I would have a letter by mid December, didn't happen. Kept ringing, same thing. Eventually I spoke to someone that listened and I explained I still hadn't had an any letters and I may end up on sick again and this time would be on a stage 3 which leads to dismissal. She got me an appointment for Feb so I just need to wait another 3 weeks or so for that. I'm seeing go on Monday but not my regular one unfortunately. He is great and always listens and helps but I'm.seeing someone else cos he's got no prebooks and I can never get him when i ring daily. Just hoping I can get through tomorrow, getting up early. I take hours to wake properly. Oh what a holiday somewhere hot and sunny wouldn't do foe me now! Lol
NeddyO sandy67
Posted
Fingers crossed you get the help you need.
sandy67 NeddyO
Posted
I know but at this time I have no fight in me, I've just come.down.with this virus everyone's been.getting and with having an auto immune disease too I usually end up.so.much worse. Blimey isn't life fun lol
JMJ sandy67
Posted
Hi Sandy!
i should have been clearer when I asked you earlier about the vertigo and fatigue... I wasn't clear from your note if you were experiencing a lot more vertigo, a lot more fatigue, or both. And the reason I ask is because I've followed a lot of threads recently, where the discussion is about how much more Betahistine that people need, than what their GP initially prescribes. Apparently you can go a lot higher than the dose you're currently on, to get better control of the vertigo. So, I was thinking that perhaps if you still had a while to wait before seeing the ENT, that you might ask your GP to increase your Betahistine dose. ( if you search the threads for NeddyO, you'll find some great info on this topic.)
It sucks that you're having so much fatigue... I fight that battle continually. It's a huge problem with active MD, and often made worse by the other meds we're on. ( my anti-seizure drugs are sedating, and It makes things more difficult when my MD flares up. ) You mentioned being on antidepressants, which can also cause sedation. And I wanted you to know that diazepam causes even more sedation, which might make this battle with fatigue, more difficult, if taken regularly ( vs. as rescue med). Still, maybe it would help short term... you never know till you try!
Anyway, I hope you'll call your GP and see if maybe s/he might prescribe an increase in betahistine and perhaps diuretics, to get you through to your ENT appointment .... it sounds like you're suffering too much now, to just "tread water" till your big appointment!
Take good care,
J-
sandy67 JMJ
Posted
Sorry, yes they have both become.worse. My gp said they are only licenced to give 16mg x3 daily but he did give me another prescription so I could then take twice the dose, but they're about to run out and I cant get another appointment with him, he would help, another doctor simply refused and said I was on the maximum already!! She just wouldn't budge, but my own gp did agree with me after I told him i had researched, he did it himself while I was there and saw that 3 x 16mg x 3 daily was the dose that seemed to work for most, the locum insisted I was wrong and 48mg was max!! She then proceded to offer me anti sickness tablets instead! I told her I already said I didn't need them and she says "well you obviously want me to give you something"!! Yeah the right meds would be great! Silly woman she was haha
sandy67 JMJ
Posted
I have an auto immune disease and was really bad with that and off sick 18 months practically bed bound. In total I was taking 16 different prescription meds, including morphine. I then started taking high doses of vitamin d3 and turmeric and felt so so much better and was able to stop nearly all my meds!! I had had the odd stumble and tinnitus but no vertigo till about June,one attack. I ignored it, it didn't happen again till august and that was a bad one that lasted hours and hours. I was told to go to a and e and had scans and was kept in ans had a lumbar puncture as they thought I may have had a bleed on brain. Thankfully they said that hadn't happened and said it was labyrinthitis, but that it would clear up in a few weeks. When it didn't doc said it is Meniere's so here I am back.on pills when I had tried so hard to get off a shed load. He also told me to go back on amitriptyline and a few others I had stopped. I'm not on as many as I was so its not too bad, I was just so happy before to have gotten off the majority and feel like im back on the slippery slope again! Isn't it really hard to explain to other people how your head is feeling. I don't think anyone actually gets how bad it can make us feel. My manager will ask how I'm.doing and when I tell her I'm actually really struggling she makes a few of the right noises but I can tell she wished she didn't ask. I finally have an occy health appt next week after I phoned them.today as I hadn't heard from.them.and this referral was out in months ago initially, bug apparently was done wrong, so after speaking to someone today she stayed on phone with me and said she'd get appointment while I was on phone, they may be able to arrange physio or something