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
donna16710 sandy67
Posted
Have you been instructed to avoid salt? This means cutting out almost all salt in your diet; salty snacks, foods such as processed foods that have salt added (and this is almost everything it seems). You are also told to avoid caffiene, alcohol, all the fun stuff of life. I had to start cooking with fresh veggies and the like. I have heard a lot of people take horsetail (an herbal diuretic) to pull off extra fluid which also pulls sodium with it. Things seem to start getting better for most people after several months and a lot of people have taken either vestibular retraining physical therapy or things like yoga or tai chi to help relearn balance. Diazepam is a hypnotic sedative which is used to treat the anxiety associated with vertigo attacks, it won't help you wake up. I have been using essential fatty acids with DHA to help my brain fog that seems to go with MD. It helps support nerve function. It is not 100% but I have significantly less issues. One of the most important things is to keep moving and not stay in bed. Your brain has to learn how to function around what is happening to the vestibular nerve. Try using a cane when you walk, I used one at first because it seemed that seeing the cane out of the corner of my eye helped me walk straighter and avoid falling. Be well and keep at it. Things do get better.
sandy67 donna16710
Posted
Thanks for replying. I already have a very healthy diet, always cook from fresh, never use salt in anything at all and drink water as my main deink, apart from.one coffee in the morning i drink water all day. Meals are full of veg and I eat fruit or yoghurt as dessert so I really can't improve on that. The fatigue is just awful but I also have an auto immune disease, possibly RA so I cant walk far or for long , can't bend or exercise. I have prolapsed disc, tendonisis in both shoulders and bursitis and OA almost everywhere. If I didn't have children I wouldn't carry on any more. My life has stopped. I'm already on antidepressants and have been for ages . This was just the last straw for me. Sorry being so negative but I cant see any hope at all. I just don't know what to do now.
sandy67 donna16710
Posted
Oh and i don't drink alcohol either, my main reply is being moderated for some reason
stu5 sandy67
Posted
You meantion coffee. I hope that is decaf as that would be good. Have you been on this website: http://www.menieres.org.uk Loads of useful info. You can also call them up. They have nurses you can talk to for help. It is a normal cost phone call and advice is free. Also have a Facebook page and sometimes someone is on that until late into the evening.
sandy67 stu5
Posted
That's great thanks I will.look at those! I don't have decaf but only have one coffee in the morning and couldn't function at all.without It. I cant emphasise enough how difficult I am finding it to wake up, but I could be anemic again I suppose. Will find out blood results next week. I think I'm gonna end up on sick again which I really want to avoid but I'm no good in work, yawning my way through the day and my eyes streaming, then falling constantly, and I work out in the community on visits etc.
sandy67 stu5
Posted
I went on the Facebook page and a lady on there said she has been seeing an osteopath who thinks that it is caused by problems in top vertebrae and she feels so much better. I couldn't believe it as I had an accident ages ago and my top vertebra are crushed together. Apparently the guy shd has been going to for treatment thinks that mist Meniere's patients problems stem from that!
NeddyO sandy67
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james84727 sandy67
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Sandy, We all are traveling this highway and it sure is no road trip. First thing I will tell you do the homework see what everybody is doing to combat this disease. 1 Limit salt and drink a lot of water during the day. Watch your diet, a lot people myself included taking beta compound can get pharmacy in Bristol, Tennessee. I personally been Shea clinic Memphis for 3 profusion's in right ear lasted about 4 months. I do the skills daily blind walking rooms , driveway, 1-2 miles, stairway. Retrain balance in your brain. Some use light sound to sleep fan or something. I have started head movements side to side and up and down eyes open eyes closed. My ears are full and ringing everyday. But not falling, dizzy, or sick at stomach. I also do yoga once week in home after I learned routine. I also do acuputure every 2 weeks. Boy I love it u feel so much better. Needless to say as happens with this depression can jump on the bandwagon. This happened to me, so do not let yourself go there makes it worse, but if need anxiety mediction or antidepressant by all means see doctor. This disease is 3 worse to have of any based on research. Hope this helps. While I am at it I know not everyone is into the gospel, but those who are let's all pray daily for each other to have our lives back each day with joy and fulfillment. Blessings
.
sandy67 james84727
Posted
Thanks for reply. I don't add salt to food, don't eat processed food, already drink lots of water but can't do yoga as I also have an auto immune disease, possibly RA, and am.limited in movement. Unfortunately I already have depression and have to take antidepressants. I just don't know how to cope with this anymore
james84727 sandy67
Posted
JMJ james84727
Posted
I agree with you, James! This is a great place to express whatever you're going through... And it's amazing how there's always someone who has had the same kinds of symptoms and experiences!!
You guys are the Best!!!
Take good care,
J
sandy67 james84727
Posted
JMJ sandy67
Posted
Hi Sandy,
I'm so sorry to hear that you're feeling so lousy. I was diagnosed a year a half ago ane I know it isn't easy. Are you saying that the betahistine has stopped working and that now you're having vertigo more frequently? Also, it sounds like you're saying that the fatique has become much worse?
I just want to be clear on what you're saying.
How much longer until your ENT appointment?
Sincerely,
J
sandy67 JMJ
Posted
Yea, the Betahistine seems to have stopped working. I felt great a few weeks before Christmas -it was working! But now I feel dreadful and docs don't know what to do..i have my appt next month with Ent so I'm hoping they will suggest something else. Trying to explain to my kids, who are both adult now, is really difficult and I feel they judge me for being in bed so.much. I feel like im being lazy, not doing anythjng I used to do etc. but just can't seem to get out of it. Today I was out supposedly supporting people in the community and I'm.relying on my stick to stop me falling over! My head feels so full and the tinnitus has become.worse again, where it had subsided on the Betahistine. I'm taking 2 3 times a day cos doc said he isn't licenced to prescribe me more, but agreed with my research that 3 3 times a day seems to be what works best for people
JMJ sandy67
Posted
I'm so very sorry to hear just how bad things are you right now. I completely understand! Sandy, I spent an entire year in the couch, I was so incapacitated! So I know what you mean about the fear of appearing lazy! And I had so much shame around having to let the housework go along with everything else.....my home devolved into a nightmarish mess (and I still haven't made a dent in it!!). But all you can do is explain to people how you're feeling, and tell them to look up Menieres Disease online to learn about it ( this site has some good family info in the reference section.) I honestly don't think anyone really gets it unless they've been there, so really, you have to be very gentle and patient and compassionate with yourself! If I had that year to do over again, I would ditch the shame and cut myself a lot more slack! When I started accepting my limitations with some compassion for myself, it made a big difference in my life.
Treat yourself gently. Get your needs met. Don't feel shame or embarrassment .... it's a rotten disease. My doctor always reminds me that people don't get MD because we look perfectly normal! No droops, no cast, no brace.... When we feel good, we're busy catching up with life. When we don't feel good, we're typically secluded, and no one really sees the extent of the sickness.
Take good, gentle care of yourself...
J-
sandy67 JMJ
Posted
Exactly, when you're really bad people don't see you cos you just can't go out. My house is a mess and I have ended up going on eBay buying loads of blinkin dresses trying to cheer myself up but nowhere to put them cos I've gone way overboard, so things end up being left in piles and I say "I'll sort that out tomorrow". Tomorrow just never comes. I've just slept for two and half hours after work, couldn't help it, so won't sleep tonight now, and I'm.worried I won't be able to wake up in the morning. I have to start work early tomorrow -8am! I don't usually start till 10 which is difficult enough, but I'm accompanying a lady to a hospital appt and she needs me to be with her as she's got nobody else and is in a wheelchair so, if course,I said I'd go with her, but dreading the morning. I just may have a couple of tots of sloe gin to hopefully help me doze off otherwise I'll be awake till 4. Sorry I'm rambling ! Haha
daniel5304 JMJ
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JMJ daniel5304
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Hi Daniel!
Glycopyrrolate is my anti-nausea med. It's [u]amazing[/u]....sooooo much better than anything else I've ever been prescribed for nausea & vomiting. It works fast and seems to cut right through it.
Regarding the difference between diazepam and clonazepam: They are both in the same class of drug (benzodiazepines) and they're both used for many of the same problems. I know that they have slightly different mechanisms of action, but as far as why one would be used for dizziness over the other? I'm not entirely sure. My doctor just said that clonazepam works well with meclazine, for the vertigo and dizziness. And for me, it does.
My only personal experience with diazepam was about 30 years ago, when I was in the hospital on bedrest for blood clots, and they gave me diazepam for restlessness. It made me soooo depressed! I cried and cried and cried! It was terrible! When they took me off of it, I was fine. Clonazepam has never made me depressed. But that could just be a peculiar sensitivity of mine.
If you're having problems with nausea control, I'd highly recommend Glycopyyrolate. And if diazepam isn't doing the trick, then clonazepam is always there to try.
I hope this helps and I wish you all the best!
Take good care,
J-
daniel5304 JMJ
Posted