Hi, I started with MD in 2007, suffering an attack a week, but I was in France, where I was prescribed Tanganil, which seemed to work fairly well, and serc which seemed not too good.
I have just started getting attacks again after a few years of very few attacks, and now I am getting one a day, usually the early hours of the morning.
My ENT bloke has given me Serc, despite me saying it hadn't worked before, 16mg x 3 a day so 48mg. Can I take a higher dose than that? My next ENT is the 10th of March, so just can't wait till then to get any advice. Seeing my GP regularly, as you might imagine.
I've got Stemetil injections which my DH is giving me almost every day at the moment as I am totally incapacitated by the attacks. Also Stemetil 5mg tablets which I take if I feel a bit dodgy.
All and any advice gratefully received. Been going through the site and have noted down diazepam, gentimycin, grommetts and medrol to ask GP about on Friday, plus water tablet in mornings. I am desperate as I can't do anything. Risking it being online like this as the computer sets me off. Can't read, write much, knit, computer, think, walk far from home, can't do anything so feeling very depressed. Crying writing this. Please help.
Fil
I would say double your serc. I'm not a doctor so it's up to you whether you do but my ENT increased it so I'm on 32mg x 3 a day with no side effects, just good ones. Plus the water tablet (prescription). I've been where you are, as probably have many others reading this, 35 vertigo episodes last year.. It's your body and in my opinion increase it, it may help you. Keep yourself safe and calm, deep breathing. Keep all noise to a minimum around you. Get comfortable and know there is a light at the end of the tunnel. Try and keep chin up, think of all the things you can (will be able to after this phase) do and not what you can't. This disease is not life threatening and if this is the hand we're dealt, we must make the best of it. Get Meniere Man and the Astronaut book (or kindle edition), someone on here recommended it, it's self help for menieres and it's good! Take care, you're not alone and this phase will pass, promise xx
Hi fil39169 I was on serc for awhile to try and see if it helped it did but Im also take lorazepam to keep me carm but the two make me to groggy I don't know what's better no head spins or feeling sleepy I'm a very hypo person and I worry a lot so that why I take lorazepam but the two aren't good
Hi, so sorry to read about your problems, it seems to me having been on this site for a few weeks, no one has the definitive answer, what works for some is useless for others, even when you think you are winning it can still come back, 1 or 2 years later, read all the threads in these discussions, try what you think may help, my last attack was mid November last year after a real bad summer, I read about salt being a catalyst so avoided it whenever possible, ie no takeaways or rubbish food, I also stopped the Betahistine, but tomorrow, who knows,its such a shame that we cant get proper advice that works for us all, just start trying to alter your diet, one things for sure sooner or later you will improve, we all know what you are going through, all the best and keep in touch
Hi peter I'm just wondering how do you cope with your job coz I can't for the life of me see how anyone could cope working every day, is touch and go for me I can't even walk straight let alone drive so how do you and others cope
Hi Angela, I have just had 21 out of the last 32 days dizzy, of which about ten really bad. I'm keeping a diary for my ENT specialist who callously prescribed the betahistine and said come back in three months!!! You don't need that long to see if something is not working do you? I upped my betahistine (serc) to 24mg a day yesterday but if that doesn't work I shall try the 32mg. Touch wood I haven't had an attack this morning - had them for last three mornings in a row. Feeling like s**t though as got hardly any sleep for fear of having an attack every time I woke up! Kept me tense and heart pounding for hours, then would drop off, and wake up again to fear of an attack. Anyone else have the stemetil injections?
I'm seeing my GP on Friday with a list of all the things suggested on here! I had an eye op on the 18th of December and the GP thinks it has made my vertigo worse. It was correcting a corrected squint, and I really am wishing I hadn't been so vain as to want to change my appearance..... It feels like retribution.
Hi Peter, I already do the diet thing - no caffeine, no salt, no alchohol, so I can't make that any more suitable! I'm also on a low fat one now as DH has high cholesterol and I am joining him as I could do with losing weight. So pretty healthy diet wise.
Like you, Sarah, I can't walk a straight line and I'm afraid to get far from home for fear of an attack - even walking the dog. Not driving at all so couldn't possibly work. Do you get any benefits at all?
No I was and idiot I left my job thinking this Vertigo would go away in weeks didn't so I pull my super only to find out I could of claimed sickness payment now that I have found out I have MD so no centerlink class that as income so I have to use that all up
Hi Sarah, I was kind of lucky, if you can call it lucky, my job was half home based and the rest working throughout the UK living in hotels, so i was always able to manage by hitting my hotel room for 24 hours when an attack came on, it strikes me there seem to be two types of MD, my type which is so servere when it comes you are rendered incapable, unable to even open your eyes in an attack without retching, but this passes in 2 to 8 hours and 24 hours later you are back to normal, and then the type you and several others get, which is dizzyness for days, both equally scary, however it can change as I had a prolonged attack last November, abroad, it went on for days and we thought we wouldnt be allowed on the flight home as no one gets our illness and I would have been deemed to be drunk, just recovered in time, until you get something medically that works I cant see how you can work if the symptoms are so regular, or not directly for a company, what about some type of home working, down here in Devon there is always a call for Dog walkers, they charge £9 an hour, not much but its monet coming in until you take a turn for the better,or house sitting, stuff like that where you can dictate when and how you work Im sure there must be loads of websites on different types of homeworking, you may need to learn a different skill but a change of direction may help the MD anyhow hope your feeling better keep in touch
Hi Peter, my MD is so bad I'm getting attacks every day. Do you have the injections? I just couldn't work, like Sarah, because even dog walking (we have three of our own) is out and I can't go far on my own in case I have an attack. I am basically kept close to my DH as he can do the injections if I get an attack, which can be very sudden. I've started with drop attacks, which I didn't used to have when I first had MD. They are scary. I had one in Sainsbury's (we had walked) and had to go and sit in the café with a BUCCASTEM tablet in my upper lip, looking out at the daylight (the fluorescent lights had set me off) while DH did our shopping and I crossed all my fingers it wouldn't progress to a really bad one, which, luckily, it didn't. After an hour I was able to walk home. He found me on my knees in the clothes dept!
F
Hi fil, I dont know what the injections are or do, are they instantanious to stave off an attack, or pro active to stop an attack, as I said Im lucky ( so far) in that my attacks only last with recovery 24 hours and although last summer was bad Im usually free of attacks for 4 months upwards, its like all the s***t has emptied out and then the build up starts again, but through this forum Ive discovered MD comes in different forms, something no one in the medical proffession told me, and I wonder if they actually know!
Hi peter I live in australia I still can't drive a car and I live on three klm out Oma small acre I'm dependant on family to get me around this last turn has lasted a month. I have trouble focusing on the ground when I walk or if I look down at the ground I have dizzy spell and every morn it takes me about two hours to get it together.i feel for all of us I didn't plan for this I'm my life I haven't finished doing this I love but now bike riding was one of them but I'm not giving up 😄
I have both types of Meniere's described here. I can have a severe attack with diarrhoea and vomiting where I struggle to open my eyes with severe spinning and eye darting which will probably last around 4-6 hours. Then I can have several days in a row where I just feel dizzy if I tilt my head up or down and my balance is a little off so I weave around when walking. Luckily for me I am managing to hold down a job of 35 hours a week ( a job within a couple of minutes walking distance as I can't drive) and they are very understanding when I have to leave suddenly and go home. I take Serc 16mg 3 x daily, a water tablet each morning, Buccastem when needed and Diazepam when an attack starts. I follow the low salt, no caffeine, alcohol, chocolate etc diet as much as i can, but nothing stops this illness. I sympathise with each and every one of you on here that suffers as I do. This is the most debilitating illness I have ever come across