Hi, I would like to introduce myself to this forum and thank you for the wealth of information and support you have provided. There are a lot of smart people here who care immensely about others. I have been hanging back quite a while hoping for some revelation that I could contribute but have nothing so far. My symptoms began December 2014. I woke up one morning and both my ears were clogged; this symptom seemed totally out of the blue. Current symptoms: both ears clogged (right ear worse), fluctuating pressure, hearing loss in right ear, ears cracking and popping, symptoms lessened when lying flat on back; no vertigo but some dizziness Doctors: Have seen four ENTs; number one said may be Meniere’s Disease and to eat a low sodium diet, passed me to ENT two; number two, who specializes in neurotology, said that I don’t have Meniere’s Disease since I don’t have vertigo and ordered an MRI to check for tumors; doctor three said I have cochlear Meniere’s disease and said to eat a low sodium diet and take a diuretic; doctor four basically a carbon copy of doctor three Tests: multiple hearing tests that showed low frequency hearing loss in my right ear; MRI and CT with normal results, no sign of anything wrong Medicine/Supplements: - Took diuretics for 8 weeks and they did not help me, the side effects of these made me worse overall - Acyclovir for two months and counting, prescribed by gynecologist who did me a favor; ENT would not prescribe because “it was too late, damage is done” I’m pretty sure this is helping take the edge off of the pressure and suppress the fullness; it’s not a miracle drug but is keeping me from being totally miserable and having to quit work. - JOH: Lemon Bioflavonoid Complex, Vinpocetine, and Ginkgo Biloba extract; don’t know if these are helping me Diet: Have been eating the low sodium and caffeine diet for many months Question: Does anyone else feel like their fullness/pressure is less when lying down? This is one of the only clues I have as to what may be going on in my ears. Thank you! I look forward to conversing with you.
Jan lyn , I think it's good if you are getting Some relief from the antivirals that Could be your answer . I too have mainly The symptoms of ear fullness and clogged Feeling which is in my left ear and came out Of no where, one vertigo attack a few I think We're stopped by valium. Now mainly ear Fullness and dizziness . I was told menieres I still am in some denial I wish someone Would tell me it's not mm but that is not Happening . I'm new to all of this and Learning so much through the wonderful People on this site. I'm sure others will Be responding to you soon with plenty Of helpful info. Good luck
What dose of acyclovir? Ask your doc if you can get valacyclovir. That might be all you need. It has worked for 90% of the people taking it.
Thanks, Lisa and Scott Tom. I am taking 800-mg of acyclovir three times a day. I have tried to go down to less per day but end up feeling really bad again. I would like to try Valtrex but I'm not even sure I can get another prescription of acyclovir let alone change to Valtrex. I'm probably going to have to beg one of the ENTs. I wish they would be more flexible; they don't believe it is helping me. I'm also trying acupuncture and Chinese herbs right now. I should probably post some information on one of the acupuncture threads.
First, the a/v do not have immediate relief for a lot of people. I was on valtrex full/load dose for 2 months before starting the tapering down. Second, for me I had the ear pressure for almost a year before I had a vertigo attack. I was going to doctor after doctor because of the ongoing pressure, regular dr, ent, dentist - everyone said everything was fine but my ear had such pressure 24/7 that without realizing it I would pull and rub it throughout the day. Third, no for me the pressure doesn't change whether I am upright or laying flat. It does seem to be worse if I sleep on my "bad" side. I do like going to Nucca. Not sure if it has helped me for the vertigo but it definitely helped to eliminate a limp that remained after I tore my ACL and dramatically helps my headaches and neck aches. I tried acuptuncture during that first year and it did not seem to help. I do have sinus issues and when my sinus is acting up, my ear pressure will increase. To note, dr's had ruled out any sinus issues for me multiple times because it doesnt hurt for me tapping on the cheekbones and above the eyes. Yet when we did a contrast ct scan to rule out other causes for vertigo, they found acute, chronic and someother type of sinus infection that showed clearly I have battled it for quite some time.
I told the latest ENT about Gacek and he got a big smile on his face. He knows him personally and said Gacek has a small group of followers. He criticized Gacek for lumping multiple conditions (BPPV, Meniere's, vestibular neuronitis) into one and treating them like they were all the same condition. He does not respect the science that Gacek uses. He didn't go so far as to call him a quack, but I wondered if that was what he felt. So showing him Gacek's paper was not going to be effective in this case. With my medical plan, shopping around for a doctor won't be easy. I'll have to think hard on this one and figure something out.
Did you happen to mention how many of us get symptom relief from antivirals? He can smile all he wants but Dr G's treatment is working for many of us does he have a better treatment? Has he ever tried using AV's in his clinical practice? These questions aren't pointed at you I am just appalled at his arrogance and ignorance..sorry I am also sorry you are having a difficult time finding a doctor to prescribe an AV..try you primary if you haven't they are more willing as a rule.
nicmger, That is what I've been worrying about--having this turn into vertigo. So I too have been trying many different treatment options. I would like to find a NUCCA-certified chiropractor. There isn't one anywhere close to where I live. I also have sinus issues and wonder what role they play. Are you to the point now where you feel pretty good? If so, do you think it's mainly because of the Valtrex?
I know what you are saying and I agree. It's like there are the conventional, establishment doctors and those who are breaking from the conventional protocol and they don't see eye to eye. I have never had trouble getting medicine before this. I've asked my primary to prescribe it and she won't do it. I'll come up with a strategy though. My gynecologist may prescribe it again to me.
Without a doubt I am feeling better because of the Valtrex. Before the a/v, even the times that I didn't have the vertigo attacks (mine always came in clusters) the ear pressure was constant, the ringing always there, always fatigued. After the first 4 weeks of a/v I noticed an improvement but thought there could be "more", dr agreed to stay on the load dose for additional month Since then I have minimal to no ear pressure ongoing - it comes up once in a while but an extra valtrex will knock it back down. Limited ringing, not exhausted every day and no vertigo attacks. 9 months in between clusters was the longest prior. Definitely try with your GP or any dr that has the ability to prescribe medicine. (When I was in WA sometimes my dentist actually prescribed the antiobiotics I needed for my sinus infections because getting the antibiotics sometimes I felt like I was asking for morphine! LOL) Nucca - try searching for upper cervical in your area. Sometimes you can find the "same" being called different, like Blair, QSM3, many names. Similar to Vicki, and I have experienced it as well, I get so frustrated that a doctor will negate something as "it won't work" but they themselves have nothing to offer. In my opinion, unless they thought it posed a danger (it doesn't) it makes no sense not to at least try at full dosage for at least 3-6 months.
Thanks for the good advice! I'm very glad that you have found something to end the misery. I've read that valacyclovir has better absorption and has more prolonged concentration than acyclovir, so I'd like to try the valacyclovir. Has it also helped the clogged ear feeling (aural fullness)?
JanLyn - for me, yes the a/v helped the fullness significantly. But I think most doctors would consider the a/v for the vertigo piece primarily. For some reason they are not as "concerned" about the other symptoms in my opinion. But the a/v helped me with everything.
Oh, that is great news. Thanks for your helpful input. I agree that the treatments focus on the vertigo. I don't know if it's because vertigo is the worst, most debilitating symptom or because the vertigo is the most researched symptom and has the most established treatments. I'm glad there are treatments for the vertigo because that feeling is hell on earth. There are almost no treatments for the pressure, fullness, and dizziness. The diuretic didn't work for me. My ENT gives me a hearing test every time I go in and uses the results to determine how I'm doing. To me the loss of hearing is just one small part of the symptoms, and the other symptoms are so terrible that I don't care as much about my hearing. It's kind of maddening. In their defense, they can't see the microscopic condition of the inner ear, so the hearing test is about all they have for diagnosis.
For sure I believe that treatments mostly focus on the vertigo because those extreme attacks are the most "concrete" and life altering. Those attacks are the ones that would prevent working, going anywhere, driving, even walking. The other symptoms absolutely impact our lives but from a medical standpoint probably not the focus. As someone who has experienced the 6+ hr attacks of extreme room spinning vertigo, somersault vertigo attacks and even drop attacks, I can see where the medical profession would choose to focus on that piece.
Surprising news. One of my ENTs has agreed to prescribe an 8-week trial of valacyclovir even though he doesn't recognize virus as a cause. I thought sure he would refuse, but this shows he has some flexibility. He wanted me to take a diuretic and I told him I tried two different ones, and they made me feel worse overall. So I'll be trying the valacyclovir soon and see how it impacts my symptoms.
Keep at it for at least 6 months. Some folks take longer to see results. Just tell the doc it's working, and you'll probably get as much as you want.
scott tom, what dose did you take for the six months? 1 gram three times a day, which is the max dose?
I was fortunate and didn't have to take it that long, but others have done so in stubborn cases. Yes, 1000mg tid
I ended up taking 3x1000 for 8 weeks (program calls for 4 weeks but I was better but not quite "there" so dr agreed to extend the load dose). Then 2x1000 for 4 weeks. Then 1x1000 since then. Every blue moon I feel a bit "off" and take an extra.