So fed up
Posted , 8 users are following.
Hi guys,
I've not written on here for a while. I suppose that's because I've been ok. That's until last week. I got really tired at work and noticed my tinnitus getting worse... Didn't think anything of it. Then it hit on wednesday, all of a sudden. I thought I felt weird and there it was, the brain fog, the weaknes, my right ear being full and going eeeeeee I've been off work since and I can't seem to be getting any better. Some days I think I'm ok then it hits me again, I'm floating, I feel weird. I actually went to work this morning thinking I'd be ok but had to be driven back home as I just burst into tears and apparently looked really white and unwell.
I am so fed up of this disease!!! The ENT have discharged me but I feel like there must be more they can try and do for me. All I have is betahistine and they have not done any further tests just hearing test and because my loss is not typical of Ménière's, nothing else. I feel like I've been had by lazy doctors who can't be bothered! Even if it's not Ménière's, surely they can rule out other things at least? Should o just go back and annoy the hell out of them and demand answers? Or should I just accept my fate? I'm only 38, have three kids aged 3,10and 14 and I hate being unable to work, play or cook for them. I should have the energy to be there for my kids and instead I feel like a complete failure and am now crying my eyes out in bed.
Sorry about the moan but I know only you guys understand.
0 likes, 33 replies
naomi68931 Brookiana
Posted
Brookiana, I am so sorry you are suffering and know how hopeless and despairing this can make you feel. Meniere's Disease is a nasty one and difficult to cope with. I have been dealing with it for many years and can tell you that what has helped me the most is being very (and I mean VERY) strict with my diet. I limit my sodium intake to at most 1500mg. a day, have no alcohol, and no caffeine. I also limit my sugar. It's hard to have such a strict diet but it generally keeps me going well. I also use wrist bands (available for people who have motion sickness...in all pharmacies), ginger (if I feel queasy) and avoid situations that trigger attacks (like large, noisy crowds). Perhaps you already know all this, but in case you did not, I wanted to share my thoughts with you. I wish you well.
daniel_43572 naomi68931
Posted
Naomi does sugar effect Meniere's? Cause if so that might be hurting mine cause I love my sweets I gave up caffeine and that was very hard I miss my coffee I try to watch my salt intake that's hard to cause everything has it in there but I don't add any.
naomi68931 daniel_43572
Posted
Yes, sugar does indeed affect Meniere's. I, too, love sweets but I'm careful to limit it to about 10 grams a day. With salt I am very strict (as I wrote) and it make all the difference. Check the labels on everything you buy...you will be shocked at how much sodium there is in everything. I eat no processed food and nothing from cans unless it is low sodium labeled. This strict diet is very difficult but I have not had a vertigo attack in over two years following this way of eating.
Brookiana naomi68931
Posted
Hi Naomi, yes I do know about the strict diet and I will hold my hand up and say that I am rubbish at it. I drink , have coffees and smoke so it's probably all my fault 😩😩😩
I have seriously cut down on all three fronts though but I am finding it incredibly hard to give it all up. I suppose I did when I was pregnant , three times, but it made me feel so miserable. I'd need hypnotizing to be able to accept a strict diet as my life consists, when I'm well , of going out to gigs and nice restaurants (where I'm sure they add a stupid amount of salt to their cooking) , having a drink with my husband in a pub or things like that. I think I might as well end my life and live as a recluse in a monastery -or at least that's how it would feel like. I admire people like you who can do it!
daniel_43572 naomi68931
Posted
Guess there goes my sweets that's gonna be harder than caffeine but if it works I will do anything. And I know when it gets summer time it will get better because we eat a lot out of our garden
naomi68931 Brookiana
Posted
Of course the choice is yours. Speaking for myself, I felt it more important to be able to enjoy events and people by actually being there. If I don't follow the diet I'm in bed and worthless. So, for me the choice was obvious: people are more important. Whatever your choice, I hope you get relief and enjoy your life more.
naomi68931 daniel_43572
Posted
Good luck with this. I hope it helps. I'd be interested in your letting me know if limiting sugar makes a difference. And yes, eating from your own garden is great. In the summer my husband grows tomatoes and they are the best!
daniel_43572 naomi68931
Posted
Yea we grow a very big garden every year and we put stuff up in the freezer. The only bad thing about giving up sugar is a lot of times when I don't feel like eating I will nibble on a pop tart or a cookie cause sometimes I just feel sick on the stomach to eat anything else I have went from 265lbs to 163lbs dealing with this and everyone says I bet you feel better after loosing it but I really don't I believe I feel worse I look like a rack of bones
Brookiana daniel_43572
Posted
I've lost a lot of weight too but I think it's a combination of feeling rubbish and the betahistine playing havoc with my gut. I also will nibble on a biscuit if I'm having a bad day but am not usually a sweet person. I'm all crisps and nuts but you can't have that either anyway, too salty... Is there anything we can consume that isn't bad? Should I turn into a rabbit and only eat veg? Our diet at home I consider to be good compared to most people as we cook from scratch but I bet even the most innocent looking ingredients have lots of salt,right? Having a vegetable patch has always been on my list of things to do but at the moment we only have a herb garden.
daniel_43572 Brookiana
Posted
I'm glad to hear I'm not the only one this has caused to loose weight I was worried it was from something else they haven't found yet. Your right I guess we just gonna have to only eat food we prepare at home from scratch
angela84522 Brookiana
Posted
So sorry Brookland! I can relate. I was crying today too. It's a frustrating Disease. You must keep trying. There are many things to try. I have changed my med up several times. I am currently using Pine Bark and Dandelion. Helping a lot. I wanted to try a anti viral medication but was allergic. I had shingles a year ago and we thought perhaps that virus is still active in my ear. I need up in the hospital because of the reaction I had. Others are having great success with steroid shots in the ear. Don't give up! You will feel better. My Grandma is 95 and has had it since her 40s. It got a lot better for her over time. She lost hearing in that ear and was only dizzy a few times a yesr. Keep going
Brookiana angela84522
Posted
Thank you Angela! I will keep trying ! The story of your grandma gives me hope ... I have a hearing loss in both ears and hearing aids but apparently it is a rare hereditary form of loss so that's why they haven't done any more tests and have just discharged me but I feel like there is more they can do or investigate. I'll get referred again and will not give up! 👍🏼
Womanofthewoods Brookiana
Posted
My situation is very similar to yours. I'm so sorry!!!! To reiterate everyone else- you need a neuro- otologist- an ENT that specializes in inner ear disorders. A regular family doctor or general ENT will not have enough experience to know what to do since it is rare. The anxiety and panic attacks are a symptom of your inner ear nerves being flared up. Happens to me often. I was given Valium which does help. I cut it in 4 ths because everything makes me too drowsy too. I use it very sparingly because it can be addictive. But it really helps. Anything that helps you relax. A walk in the woods works for me(thus my nickname). A massage. Heating pad. I tried Accupuncture this week- very relaxed afterwards. But the stress of a day at work and I'm back in bed.....I hope you will find relief- so sorry
Brookiana Womanofthewoods
Posted
Hi womanofthewoods!
I did feel like the second ENT docotr did not have much of a clue as I asked if it could be related to my sinuses being blocked (they were at the time) and he looked at me with these crazy eyes and said no then said yes! That didn't exactly give me much confidence in his judgement and he ended up discharging me. I came out of there feeling very misunderstood.
I am terrible at always imagining the worst and it does cause anxiety. My job is so stressfull too, I know this is what has triggered this episode. I have seen occupational health and he has written a report to explain all this to the school I work at but they have not mentioned it yet so I am not sure they have read it yet. I do yoga but have become a bit rubbish at doing it regularly at home (I also go to a class every week). I guess I should really try to keep it up to reduce my stress levels but it is a vicious circle : I'm tired so I can't find the energy, so I don't get rid of the stress and then I'm even more tired and voila, Meniere's strikes back. I have often said that I should get a dog to force myself to go for walks in nature as I absolutely love it . I have two cats already, I don't think they'd agree!! Or my husband
.
I have also tried acupuncture as part of my treatment for my bad neck/shoulder and I must admit I found it relaxing too. I guess I'm doing a lot of right things already but not regularly enough. And you're right, it takes one bad day to feel like you're back to square one!!
I will keep strong and fighting, thank you for your reply. I hope you will be fine too.
jacki999 Brookiana
Posted
Good morning Hun
If I can give you any advice it would be there is hope. I've been really down about this illness and have tended not to read any comments in here as felt it depresses me more than supported me - until yesterday!
Yesterday I read about a lady that had found a treatment that worked for her and she is now finally well again.
I'm 3yrs into my diagnosis - have tried most treatments - I'm in the UK so the NHS is research bases and restricted with options. I suffer daily vertigo attacks and am now off all medication and looking at steroid injections.
We all get very down with this illness but keep going Hun - nag, email and phone your ENT doctor - otherwise they presume you are ok.
Best wishes Jacki
Brookiana jacki999
Posted
Hi Jacki,
I'm so sorry you are having daily attacks, that's awful!
I don't always read all comments either, I must admit because you start getting obsessed with it and I'm sure it causes more anxiety!!! On the other hand , sometimes it reassures me that my symptoms are not made up or that I'm not in fact about to die!
I am going to the doctor's this afternoon and will ask for another referral. I have written down all my symptoms, all my concerns and all my other body complaints (there are a few - no, I'm not a hypochondriac) so they can maybe find other leads or at least believe me when I say I am not well.
In the meantime, I have upped my medication because I know I won't be getting an ENT appointment for months and I will ask about supplements that other people have mentioned on here. I've been making sure I only drink one coffee a day (and not two or three), have been looking at my bottle of red wine and not opened it (although I have read on the Meniere's uk page that one glass can actually be beneficial) and am cutting down on the fags (I don't smoke much anyway). I am also using a natural nose spray to try and keep my sinuses clear. I'm trying to remain positive and am actually up and dressed today as opposed to in bed all day getting depressed.
It's a matter of mind over Meniere's .let's see how long it lasts for.
I really hope you can find a solution , you're right, there's hope, there's always hope. Fingers crossed the steroid inhections work for you!!
Brookiana