Friday, August 29, 2014

latest comments from My life and menieres disease august 29


2 comment from Karen
 

Hi Peggy I have been diagnosed with Menieres, GERD / Silent reflux and asthma. I am a holistic therapist and have managed to stay off the inhalers by using holistic remedies and changing to a vegan low salt diet. I use SERC Betahistine here in the UK and find it does help but I was giving a prescription for a different make of Betahistine and it made me feel ill, diarrhoea and wheezy ...and didn't work well for the symptoms at all ...so I didn't finish the pack ...too scared the asthma aspect would be triggered off again. As soon as I went back to the other SERC Betahistine, I had no problem so the doctor has made a note to only prescribe that brand.
Hi I read your comment and thought maybe I should mention this. I have had the full spectrum of Menieres symptoms on a daily basis with my walking style varying from day to day ...either managing to sway or needing a walking stick. I was given Betahistine SERC from the Dr (I'm in the UK) and although it takes at least an hour to have an effect then only a couple of hours reduced symptoms, I am finding that by taking an extra dose 16mg x 4 instead of 3, my systems have lessened and my walking is better though still not able to walk in a straight line. When I got my prescription of Betahistine from a different doctor, it was a different company and I felt bad from the first pill and only got relief when I took 2 pills at a time instead of one. I got intense headaches and napped for longer as symptoms were wearing me out so now my doctor makes sure that I get the Serc Betahistine from the same company ....I have heard from other people on different medications that different batches can make a difference
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Wednesday, August 20, 2014

Latest comment August 20 My life and meniere's disease

Hi David and others,
I was diagnosed with md about 18 months ago after experiencing two severe attacks that I originally thought were the result of something I picked up during disaster recovery work in the tropics. Fortunately my GP asked the right questions and ordered the right tests to make a diagnosis which was later confirmed by an ENT specialist. Since diagnosis I've had several severe attacks interspersed with less severe minor attacks. This year I had a severe attack in April and another severe attack yesterday both of which resulted in an emergency ambulance trip from my workplace to the local hospital with intravenous medication allowing me to be discharged after approx. 4 hours.
Unfortunately my symptoms of hearing loss, hearing fluctuations and tinnitus are impacting on my work, but I believe from all I've read that all we can do is hang in there and manage as best we can.
Thanks for the chance to comment.    

Wednesday, August 13, 2014

latest comment from My life and meniere's disease aug 13

Hi. I had my labyrinthectomy 5/1. Have continued headaches daily and 2-3 days a week migraine. Much vision problems and just started driving very short distances. I feel like I'm floating a little above the ground with Jello in my head. I find moving around as much as possible helps, much better than just sitting. I visit vestibular balance therapist once a week and also do "Cawthorne" excercises, along with the new added excercises the therapist gives me weekly. I think a key to recover is to move as much as you can, keep the fluids moving around as much as possible. Maybe they will finally balance out. You just have to keep fighting, don.t sit down and give up. One big trigger for me to have a bad day, is barometric presseure. Anytime there is a weather change I go into a tailspin, but I get up and do excersises holding on to everything, but do them. In the end they always help me feel better, just fight the nausea and spinning and headaches and blurry vision and fight it. I do have days when migraines will put me down. No light, no sound, no movement, just get away and leave me alone and I will eventually come out of my dark place. I can't do computers, TV, reading but for limited time.
I did go through a spell of severe depression and had to get help with that. I felt like fighting so hard to get back to "normal" I was about to loss my mind, bad feeling, thought I would be like this forever. Lost coping skills. But thanks to my family and close support group, who really don't totally get it, I am going to fight it. I did have to sell my Harley, but stuff happens and we do the best we can. Maybe one day I can ride with my husband, again. I have a grandson, 1 yr, 8/5, if nothing else I'll focus on him, That will help get me through. I'm 58 yrs. old, diagnosed 2006-2007, got tired of the constant surprise vertigo attacks, Meclezine and Phenergan by the couch, in the bedroom, in the kitchen, in the car.....I had sac decompression surgery and it helped some with the pressure and headaches, but seemed to stop working and I decided on the labyrinthectomy. I have my days when I wonder, but what choice did I have? I will continue my current schedule and believe it will all work out. Patience is not my best virtue, so I have been tested to an extreme, but feel it has made me a stronger person on the inside. Just keep on fighting it, don't give up

Thursday, August 7, 2014

Latest comment August 7th my life and menieres disease

Latest comment August 7...

I have meniere's and I was also prescribed lorazepam for my vertigo attacks. Doctor first tried meclizine, but I found that didn't help at all. So far, lorazepam seems to help a little. I find the spinning starts to subside roughly half hour after taking a lorazepam pill. This happened at work today - very scary, but fortunately I have my own office door I can close for a couple hours.

A few months ago, I was having a cluster of severe vertigo attacks. Really debilitating, but it was before I started my current job so I didn't have to worry about work. Each time I went to my doctor, I was feeling better (otherwise I wouldn't have been able to go) and I practically begged him to try a more advanced treatment such as injection or maybe even sac decompression. But he said that because I wasn't currently experiencing attacks, he couldn't do any of those - he said those treatments are not meant to be preventative; rather, they are to treat symptoms that are currently happening. That was so frustrating because by the time I am able to schedule an appointment the attacks have already passed. They don't happen at convenient time! Does that sound right - that the doctor can't even do an injection of steroid unless I am currently experiencing attacks? It didn't right to me, but have any of you guys been told the same thing?

Thanks! I am really glad I found this blog.

Saturday, August 2, 2014

latest comment August 1st

I was diagnosed over 30 years ago and at that time the medical world seemed to know nothing. It's a little better today. Betahistine was recently prescribed and a low tyramine diet. It seemed to help until recently. Now the attacks are back and frequent. I agree that stress and exhaustion are triggers. There is no cure I've been told. And it does seem to spontaneously go away for months at a time. Mine started up again in early July and continues. I take a water pill daily too. One thing that seems to stop it is Prednisone but that is not good to take for any length of time.
Always keep chewable Dramamine near you. It will save you from throwing up. You get ill from motion sickness.
Thanks for reading.

Wednesday, July 30, 2014

Latest comment on my life and menieres disease July 30

This is from Jeff...

 My tinnitus (and hearing) is fairly stable at the moment but I was told during a hearing aid maintenance visit that my bad ear is full of wax. I put this down to the effect of wearing the aid. The audiologist was unsure about the best way to remove the wax given my Meniere's Disease - she wasn't sure whether syringing was advisable.

I wonder whether anyone else has experience of this. 

Friday, July 18, 2014

latest comment on My life and meniere's disease

from Laura Wachala...

Hi. I've recently started suffering severe vertigo attacks (two in the last 36 days) and was originally told by my ENT's Physician's Assistant that I had Meniere's disease based off of hearing tests, MRI and my symptoms of vertigo, tinnitus, etc. I was put on a diuretic daily and given Prednisone for 10 days after each attack. Today my ENT, the doctor, told me I do not have Meniere's because I've not responded to the Prednisone and diuretic with low salt diet.

While I've not read every single post on this blog, I think I've read enough to believe this may not be correct. I hate that all of you have had to suffer the effects of vertigo, and all of the other symptoms, for years, and I do not want to go down this trial and error path. I've doctored with this ENT for about 10 years for chronic ear infections, tubes in my ear, etc, and have trusted him up until now. Now I am starting to have my doubts. If anyone has any advice for a newbie, I'd really appreciate it. First hand experience is huge in my book, and heaven knows you have all experienced quite a lot. Thank you.