Hi! I'm new but have been lurking and reading for a few days now. My first Meniere's attack was this past summer. It came on quickly and hit hard. Ended up having to call my husband to come get me from work. That's happened twice at work. I had a few small ones after that and regular dizziness in between attacks. I had another one in December that sent me to the ER and then the worst one yet last Monday, again another trip to the ER. The nausea wouldn't stop and I couldn't keep the antinausea med down. Antivert did nothing to help. I was officially diagnosed at the beginning of February after months of floating between a neurologist and an ENT. I'm still struggling with the diagnosis knowing this is a permanent thing. I've been pretty down lately and had a hard time pulling myself up. Has anyone else had this feeling when diagnosed? The attacks are debilitating and I have missed a ton of work and had to cancel many plans and appointments due to being unable to stand, walk, or drive. My ENT currently has me on Diazide water pill and a low salt and low caffeine diet. I also have pherergan and antivert to use if I need it, but it doesn't seem to do much good. The attacks have lasted several hours and are quite scary. I have read several different alternative treatments on here including then one by John, vitamin k2, magnesium, vitamin d3, antiviral rx, and gluten free. I definitely want to try these but am unsure about where to start. What do I start with or do I jump in head first on it all? My ENT said no to the antiviral. Thanks so much for any help!
Hi sorry that you are suffering but this is the best place to be. It is difficult to come to terms with but I always compared it to other illnesses to make me feel better.you will get plenty of imputation and you are right there are many approaches. Knowing what I know I would go with the antivirals first as you only have a limited time I think to preserve your hearing. I'll probably chip in again as your thread progresses. Best of luck frank
Welcomemoodymom27, I'm so sorry you have to deal with this terrible disease but you have come to the right place. Many here have found relief through various treatments and I encourage you to read as much as possible. In my case I've done the Dyazide, low salt, and no caffeine for the past two years with very little difference. In July 2014 I started antivirals and that has helped me the most. I still have dizzy issues that may be related to migraine associated vertigo (MAV) but many on this site have found complete relief of symptoms on antivirals. My ENT scoffed at the idea also so I convinced my PCP to write the script. I encourage you to try as many treatments as necessary to resolve your issues. Don't let any Dr or family member discourage you. And if you exhaust all the noninvasive treatments that you are comfortable trying then consider surgery. Again many here are back living their lives because they took these steps. You didn't say how old you are, but I get the idea you're young. Don't let this disease spoil your life. Good Luck!
Thank you for your responses. In answer to my age, I just turned 42. I have spent the better part of the day going through this forum and have learned a lot. There's such a wealth of information here. I definitely want to try a "natural" approach, meaning vitamins, herbs, etc. I am in the process of going through an herbalism class and did some research in my book entitled Herbal Antibiotics. The one herb that seemed to fit my needs is Chinese Skullcap. I plan to start use it in tincture form so it will not be ready for about 6 months as I make my own tinctures. In the mean time I'm going to start slowly adding the supplements from the member John I believe. I look forward to learning more and gaining some control. Thanks again!
I would highly recommend doing your best to get your dr to prescribe anti virals. Many here find relief. and if started early they can potentially reduce long term damage of your hearing. Also, if you can get your dr to prescribe lorazapam - I have that "in case" the vertigo hits. It is placed under the tongue so not only does it get into the blood stream quicker no risk of throwing up. For me it shortens my attacks significantly - and the shorter the attack, the easier to get through, and the lower amount of puking.
The worst thing I did in the early days of menieres was not to realise fully how the disease can kill your hearing. I couldn't get antivirals anyway (because of the obstinate know it all but know nothing doctors) but I would have traveled abroad had I known the true importance. It was described to me once in simple terms that each vertigo attack flattens some of the hundreds of small receptor hairs that we have in our inner ears. The more vertigo attacks we have the more hairs are flattened until there are none left to vibrate and pass the sounds on to our brains. I am 95% deaf in my left ear ( you could play loud rock music in that ear and it wouldn't disturb me) and the trade off for that I believe is no more vertigo which is the case with me. Which is ok as long as I have hearing in one ear In my opinion you can take your time trying the various possible routes to gain control like JOH, alternative medications, herbal, treating it as MAV, Nucca, acupuncture etc to discover what works for you but in my opinion time is of the essence to ensure you have your hearing and from the many stories on this forum the best chance you have is antivirals. Llysine will help to stop the herpes virus from replicating but its not as quick as antivirals. By the way JOH has said many times that Llysine can be taken at the same time as antivirals. Best of luck
Forgot to mention that I will be going to Spain (I'm from the uk) in May and will be having hearing tests before and after my trip. Whilst I am in Spain I will buy antivirals (over the counter) to take before I have my second hearing test. It is probably a futile exercise because it is 10 years since I lost the hearing in my left ear but I'll do it anyway. I will start a new thread before May to find out what is the longest period of hearing problems for people who have had their hearing improved by taking antivirals and which type of antivirals are best to purchase
I go back to the ENT in May and have another hearing test in two weeks. I'll talk to him again about the antivirals. Is any one better over another?
Excellent advice, jaypr. I wish I had found this forum when I first started having my meniere's symptoms. I would have tried the antivirals 1st thing. I would have loved to have tried to save my hearing. I am hopeful that being on antivirals will keep me from going bi-lateral and losing the hearing in my other ear. I have only been on antivirals about 3 months and l still have vertigo attacks. But my ear fullness and brain fog has lessened. I will give it a full 6 months and then make my final assessment. Moodymom27, If your ENT won't prescribe antivirals, find a doctor that will. My ENT is very skeptical; but he agrees that it won't hurt. He tests my liver and kidney functions every 3 months just to make sure there is no impact. I also agree with nicmger 'Also, if you can get your dr to prescribe lorazapam - I have that "in case" the vertigo hits. It is placed under the tongue so not only does it get into the blood stream quicker no risk of throwing up. For me it shortens my attacks significantly - and the shorter the attack, the easier to get through, and the lower amount of puking." Antivan (lorezapam) is a lifesaver for me and quickly cuts down my spinning. I too put it under my tongue. It is not meant to be oral, but my ENT said it works fastest that way. Good luck and keep us posted!
Jaypr! Good to know you are from UK, so am I. Where have you been getting your antivarals from? I have been getting them online, faking genital herpes. I am taking acyclovir only because it is much cheaper. Valacyclovir would cost me £400 per month and I cannot afford it! On Thursday next week I am seeing ENT ( at last !) and I am going to ask about antivarals + Dr Gacek. When I asked my GP for antivirals, he told me it's illegal to prescribe them for MD here in UK!
Hi Marta yes I am from Liverpool. Where are you from. I'm not surprised by your Doctors comments. GPs and ENTs are frightened of their own shadows. I don't think antivirals are illegal its just that they don't want to take a chance on being sued if something went wrong.Although I can't see what could go wrong. I don't mind GPs and ENTs not knowing that the herpes virus amongst other things is likely to be the cause of menieres it's their effing arrogance that gets me. I did think at one time of suing my GP and ENT for the loss of my left ear hearing by not giving me antivirals but I had my life to get on with. I will though get something out there in the newspapers or media criticizing them and embarassing them for their closed minds. If they are so clever and dismiss the herpes virus as the cause what wonderful information do they have as the cause. I don't buy antivirals as I haven't had vertigo for 8 years but I will carry out an experiment in a couple of months by buying them over the counter in Spain when I go on a golfing holiday in May.This will be to test if they improve the hearing in my dead ear. I will get hearing tests before and after taking the antivirals I buy in Spain. I doubt if my hearing will improve because it has been so long but if there was any improvement I will make sure that it is well known. I'm sure it would be of great interest in any newspaper. I took the trouble of phoning a couple of chemists in Spain and Italy a few years ago to confirm that they are sold over the counter. I will post the results of my experiment on this forum later in the year. I don't know how long you have been suffering Marta but if it's not that long I urge you to try and get hold of the antivirals if you can. There must be some doctor in the uk prepared to prescribe them. Maybe you could start a new thread asking the question on this forum or the Uk menieres forum. If you are going to ask your ENT go well armed with information. Their egos are that big I think the approach should be softly softly because if you challenge their knowledge you will have no chance. Maybe along the lines just a trial for a month as what harm could it do. It saddens me to advocate that approach but we are dealing with pompous arseholes who think that they are God and act that way. I think that all sufferers relatively new to menieres should at least take Llysine as it does help to slow down the replication of the virus that causes havoc in our ears. Also as you are in the UK i guess you have been prescribed Serc which helped me alot and you can either buy Buccastem over the counter at boots or on prescription. Buccastem can stop a vertigo attack or stop an attack from even starting. The small buccastem pill dissolves under your top lip between lip and gum. You can buy boxes of 8 tablets at boots for about £7.50 Another last mention. My great improvement happened once I treated my condition as MAV and bought heal your headache by David Buchholz. I've never looked back since Best of luck and feel welcome to get in touch again Frank
Hi Marta I had another thought. If I were in your position I would spend £150 on an appointment with an ENT of your choice. The thinking is that if you are paying for an appointment rather than the NHS you may have a better chance of the antiviral prescription as he/she may feel obliged to give you the medication. It may or may not work.
Frank! Thank you for all info and ideas! My MD started in September 2014 and after a month I went into remission. In September 2015 it came back again and it has not left me since! I am taking Serc and I also have Buccastem. It seems not to be helping anymore. In January I started JOH and I am going to continue forever.Especially Lysine. I have been taking acyclovir for 2 months and I still have vertigo. However, it is lees frequent and less severe. For my last attack (yesterday) I waited 8 days! NOT 2, 3 or 4! - this is how frequently I used to get it! And yesterday's attack was so mild that I went to work! I felt tipsy but I made it I will try to approach my ENT next Thursday about Antivarals although my expectations are not high. In the meantime I am getting them from online doctors. first one in my name, the second one in my husband's, and next I am going to ask a friend to order them for me. I will be very interesting to read about your experiment with regard to your hearing! And writing an article in a newspaper - spot on! I think all doctors think they are Gods! They do not listen to us and they are quite closed minded. That is a shame. By the way I live in London. Have a good day. I will be following your new thread! Happy holidays in Spain ☀️☀️☀️
Forgot to mention I am taking high dosages of vitamin C regularly. First I needed 30 g to flush, now it is "just" 20. I think I am beginning to feel the difference however it is not significant .
Hi Marta things may have changed but I did get antivirals online in 2008 and took them for about 3 weeks. I had no trouble buying them online in my own name and I still get so many emails each day from medical companies for all sorts of products mainly viagra. I don't understand why you would have to use different names for each order of antivirals. You could try ringing chemists in Spain Italy or other countries and ask how much they charge and if its worth it book a cheap flight and stock up. Best of luck with your ENT or GP but I wouldn't hold my breath with them.
So any of you have any advice as to what documentation I should take with me to my ENT appointment to justify the antivirals? I ordered the L-lysine, ginkgo, and Skullcap to start with. Next payday I'll order more of JOH's protocol until I eventually get it all. I may take a couple of pay periods but I'll have to start slow on it anyway.
Read and consider the applicable information on antiherpetics, here: http://menieres.org/talk/index.php?topic=557.0 Getting a copy of the Gacek paper to the doctor before your visit is crucial. If given to him for the few minutes he has to examine you, he will utterly disregard it and toss in the dust bin. --John of Ohio
I've got it printed now and ready to drop off at my ENT's office next week. Another hearing test is scheduled next week and then I go back to the doctor. I did notice something yesterday. My coordination and balance was off most of the afternoon and evening. My 15 year old got in trouble with us and she had a major meltdown. This all seemed to coincide with each other. Could stress be a big trigger? I am under constant stress it seems. I have two children with special needs and it takes a lot more time, energy. I'm also forgetting things. Like this morning I woke up and couldn't remember if my husband went to work this morning or yesterday morning. He works 48 hour shifts and I had to call him to ask him what day did he go to work. I have to make notes and write everything down. I do mean everything! Forgetting things, not being able to get my thoughts together enough to say them out loud, and repeating myself to my husband. Is this all part of it too?