I'm so incredibly frustrated! I feel like I've been diligent in everything I've tried and I'm still consistently lightheaded and dizzy, tinnitus, insane pressure, hyperacussis, hearing loss and I had vertigo again last night! I've tried valcyclovir for 6 months and now been on famvir for about 5 weeks, the full JOH regime, upper cervical chiropractor every week, no alcohol, allergy shots once a week for nearly 2 months, no caffeine, low sodium, etc, etc. I'm truly feeling like I'm running out of things to try and things aren't improving. I'm so depressed and am feeling like what is the point. I can't feel like this for the rest of my life but I don't know what else to try!
Looks like you have thrown everything except the kitchen sink at Meniere’s. What if there is a MAV component? I found that Pizotifen was the final brick in my own dam wall. My ENT prescribed it because I had reported visual triggers, the final one being the white lines on a motorway/freeway in the early hours on an empty road.
It must be very frustrating. In order to help decide which way to turn next, can you step back and reflect whether there has been any trend - not talking complete just movement - in any direction, better or worse? Do you have fewer vertigo attacks? Any hearing fluctuations? This stupid disorder is not one that turns on and off, it gradually gets better or worse. Also, what has the weather been like lately. Do you see any correlation to weather patterns? And finally, does anything you take seem like it makes you worse? On the allergy shots, i will say, it takes many months to produce discernable results although in time they helped a lot. Someone told me, they are like turning the pages of a phone book, little at first but very significant over time.
Hi TLB I'm really sorry to hear that. I hope you find what i causing this disorder for you. Worst case scenario, you can always do the laby if you're sure it's MM.
Sorry to hear it's been a rough time for you. The weather here in the Midwest has sucked for sure this week. I live in Indy, and it has been rough. I had strung a few good weeks together, but Tuesday night I gave up the ghost, took a Xanax and went to bed for a day. Literally a day, with the exception of trying to eat. Hang in there. Stress is for sure a trigger for me. I'm not going to tell you to try and not be stressed I know that's like trying to put a house fire out with a bucket of water. If you've been at this a while, you've had bad days/weeks/months before. You'll get through this. Keep your chin up. We are rooting for you.
Thanks everyone - just feeling like I'm running out of options! I'm in Cincinnati and I know the mold count is off the charts recently and that is one of the things I'm getting allergy shots for - so maybe that is exacerbating some of my symptoms. I'm also super stressed at work so that isn't helping. I just really wanted something definitive to help (like the antiviral route, chiropractor, etc.). I keep a food log and I haven't really been doing anything different with that or with medications and supplements that I take. It is SOOOOOO frustrating and depressing!
So sorry to hear you're still suffering despite all you've tried. I too have been frustrated and depressed, thankfully not right now. I'm not sure what you're eating but I've read hear that meniere's sufferers should eat foods higher in lysine than arginine. Hope things turn around for you soon.
TLB I know it's expensive but have you checked into the possibility of TMJ? I think you posted on my thread "It's been a Year". Many people on a site on Facebook called Meniere's No More...Vertigo, Tinnitus, TMJ, have gotten relief from wearing an appliance or orthotic for TMJ. I never knew I had TMJ because I didn't have pain, but when I got a 3D xray from a qualified tmj specialist (not a regular dentist), it showed that my condyle was resting on my ear. Since wearing my orthotic (15 months now) my symptoms have gone away (except some tinnitus). My hearing has gone from moderate hearing loss to normal hearing. I have my life back. I believe there are different kinds of triggers for Meniere's and my trigger is TMJ. I'm glad I found the site I spoke of above and I'm glad I started getting treatment with a TMJ specialist.
Patti - I definitely have TMJ and am actually already going to a dentist that was recommended on one of the FB pages site. I talked to him about getting a new mouthpiece to address my bite and he was so against it I was kind of surprised! Now I don't really know what to think or do! Everything is so trial and error with this awful disease that it does make me nervous that if it's not my TMJ, I'm going to mess up my bite, and I'm so desperate and miserable that I don't want to make a rash decision. Every night like clockwork though, I get lightheaded and off balance around 5:00 and I DO NOT KNOW WHAT TO DO!!!!
TLB I am so sorry you are going through that. Please get a 2nd opinion. That's what we tell everyone. Even sometimes a 3rd opinion. The dentist has to have post grad teachings in tmj--not just a weekend class. The specialist must have several classes. On the site I mentioned above, in the FILES section, there is information on what to ask a specialist (at your consult or before your consult). Also it is recommended to get a 3D xray. This is not a panoramic xray. The 3D moves around your head. It is so cool to actually see your condyles inside your head. My condyle on my right side (Meniere's side) was resting on my E. tube and ear. Remember a mouth guard is used to protect your teeth from grinding/clenching. An orthotic or appliance is used to move your jaw. Additional information in the FILES section of the site includes TMJ for Dummies. It's a wealth of information. I tell everyone new to that site to ask lots of questions of other members on the site. Get referrals from people who have been successfully treated. There is also a site on FB called TMJ. That FB site has some tmj specialists making comments occasionally. I have learned a lot from that site as well.
Work with what you do know. Every night at 5:00 .... where are you then? What are you doing? Take notes for a month of everything you eo at that time, how you feel each day etc, then go back and review them. See what pops out at you.
TLB.....you don't have to deal with this for the rest of your life. You have options to live a normal life...use them. I am sympathetic to the Labyrinthectomy. Peace
You say "nothing is working", yet you haven't even tried the most common medical procedure, gentamicin injections.
TLB, it must be a very rough time. I have reviewed your recent posts, and I would look back to think about some hard facts and options. 1. Since you definitely have TMJ, it will be the hard fact to pursue treatment. As Patti mentions, I also recommend getting second, third opinions from the best possible specialists with successful track records in treating MD patients, hearing loss or tinnitus. 2. Since you have been wearing night guard, proactive / conscious prevention of bruxism and clenching is really important. Don't clench, don't put power on jaw or neck without moving it, always make upper teeth and lower teeth apart and relax. 3. Since you have accumulated much of frustration, let's look for ways to relax. Stress definitely makes MM worse - it typically causes bruxism and constriction then less blood flow. Searching "coping skill" helps replicate it by yourself. I will also recommend taking deep breath at least 5 times a day. Exercises are also good. Let's get weapons and shields to deal with stress. 4. Mandibular exercise and neck exercise are good to mobilize stiff muscles and improve blood flow. https://drive.google.com/file/d/0B4smSaYBVJ9gaXN6aVJiRHRFUXM/view?usp=sharing 5. Yes allergy can be the trigger of MM. Inflammation is essentially allergic reaction. 15 years of steroid shots must have accumulated side effects on your regional immune system not to work properly. 6. Yes not only virus, but it can also be bacteria or mold that make it worse. Measures depends whether it is virus, bacteria or mold. For mold, measures against MAV may be helpful like yellow mentioned. 7. show us the list of exact medications that you have been on - a) what kinds of allergy shots and others do you have and what's the frequency? b) What allergy do you have and what level is it? 8. do you have any particular health issue or concern other than MM? For example, cholesterol level, weight, regular exercise, diet (like loving junk foods), blood issues etc. 9. how about heat therapy and/or taking bath up to the neck? 10. what else is remaining in the document below? https://drive.google.com/file/d/0B4smSaYBVJ9gaXN6aVJiRHRFUXM/view?usp=sharing