Landed in LA last night and got a round of allergen and food allergy testing today at the House ear clinic . Tomorrow I get to see Dr. Derebery. She saw me today before the tests just to make sure things are ok before the test. I tested positive for a lot of things. Most allergic to, get this, cockroaches! I haven't seen a cockroach in years, so not sure what to make of it. Another thing high on the list was dust mites. Then to things like various trees, ragweed, this and that. I will know more tomorrow. I tested negative for food allergies so that's a good thing. I will get some shots tomorrow and then I am supposed to get the next few rounds of shots at my local doctor's office. I have cochlear hydrops by the way. And this new round of symptoms started late January with no end in sight. Just endless fluctuations. On famciclovir and nyastatin. I don't believe Nyastatin is doing much. I hope the allergy shots do something.
The House clinic allergy staff are fantastic. I'm just starting my fourth year of allergy shots. Up till last year I was also taking Famvir - last summer Dr Derebery suggested we try stopping the Famvir and see what happens. Nothing happened - just one less medication to take and that's a good thing! I will also mention that the first 4 or 5 injections made me very tired and feeling a bit out of sorts. All the rest have been non-events. I've lost about 50% of rt side hearing but there has been no hint of vertigo in 3+ years. Good luck and good health! John
Hi Vasu, Good luck! I hope the allergy shots help you a lot. I do want to mention though, being allergic to cockroaches and dust mites, could mean you are also allergic to shellfish. Believe it or not cockroaches and shellfish are in the same family and have the same protein that causes allergic reactions. You may want to ask Dr Derebery about that. I had an allergic reaction to shrimp and on my allergy tests, I tested positive for shrimp and eventually I showed up as allergic to dust mites and cockroaches. I mention this because shellfish allergies usually happens to adults and it can be life threatening, so you may want to ask her about it.
Vicki: It's funny how you are also allergic to dust mites and cockroaches. Thanks for the pointer on shellfish! Thanks for the feedback John. Something tells me that allergy shots will work for me. I had a long bout with sinus pain immediately before getting CH this time. I still get the pain from time to time. Somehow I feel it is allergies and is related to CH symptoms. My current understanding of MM is that it is a syndrome with the inner ear getting hydrops due to any number of reasons - virus, fungus, bacteria, allergen, or something else. In that sense hydrops is a generic symptom like a headache or sore-throat. You can get headaches and sore-throats for a variety of reasons. Headache per se is not a disease but a symptom. Likewise hydrops is a symptom. Often it goes away by itself. Sometimes when a cause is clear, you go after the cause, and that fixes the problem. In my case, it seems clear that the 2009 bout was due to HSV. I responded to Famvir and it cleared up the CH. This time around it seems likely that the culprit is neither HSV nor a fungus (given little benefit with Famvir or Nyastatin). Or if it is indeed a strain of HSV, it is one that is not responding to Famvir. But I doubt it. Allergy seems to be the next thing to try.
Good luck, Vasu. The allergy shots helped me a lot but it takes months and years to get the benefit. The famvir helped too but I only took it for months not years. I still take the allergy shots. I have CH too.
Good Luck. For what it's worth my ENT doesn't want to give me AVs unless I get more symptomatic. She did give me allergy tests and I responded to everything except the control and cedar. I had a strong response to cockroaches, too. They didn't do food testing, but I know I'm allergic to crab, or at least certain kinds of it, because I always feel ill, even from eating one mystery orderve. I can eat lobster bisque or seafood stew if it doesn't have too much lobster in it, but I can't eat half of a small tail, or a whole claw. Shrimp has never given me trouble.
Anyone use over the counter antihistamines like Benadryl, or the non-drowsy Claritin etc (Canadian names - sorry American friends)?
For some reason, anyrhinf that 'dried me up' such as these increased my distortion. In one case I had my only near total hearing loss after sever days of zyrtec. I cannot explain this but I try to use antihistamines as little as possible. I do not think my experience is common though.
The allergy shots didn't help me at all but I did find out that I was allergic to almost everything. My big one was trees. Good luck, hope you get some relief.
Thanks for asking Vicki. Much better (although I ALWAYS jinx myself when I report a good period here, so you never know what will happen tomorrow ). I had more allergy testing the next day at House. I thought the first day wrapped it up but they tested for more things. I was found sensitive to many inhalants and to a few food items as well - rice, chocolate, oranges, and coffee to be specific. I had suspected rice before because I had noticed increased symptoms on days where I had had more rice than usual. But I dismissed rice allergies because I eat it on a regular basis. I have been off the food items since about 10 days now and I feel much much better. I am not sure if that's what it is but I will be off it for 3 months. They give you your first allergy shot at the clinic and send you off with five vials. I had the second shot at my primary care doctor today who was quite supportive. I am due for a follow up at House in 6 weeks. After that, they will let me give shots to myself. The treatment is supposed to be for 3-5 years. She also gave me a refill of Famciclovir - 250 x 2 per day. I feel optimistic because I know of at least two people on this forum who also have/had cochlear hydrops and the shots helped them a lot. Won't know till I try.
Sounds great! Vasu and I know exactly what you mean its like the minute we open our mouth bam! Good luck! Fingers crossed this gives you the relief from MM. Keep us posted.
June, beeskerdog : Did you also show any food allergies and did you go off of any foods? I wonder if this is a new thing that Dr. Derebery checks for.
Hi Vasu, I was tested for food allergies and none were found. Basically I'm affected by mold spores and assorted pollen. Each year I'm doing a bit better. I keep an air purifier (true HEPA) in the bedroom and it helps a lot when the pollen is thick. Best of luck, John
I did show some food allergies to milk and corn. These are idden foods so they were very limiting but I did eliminate them for 12 weeks and then challenge them. Neither the elimination or challenge showed anything so I do not avoid these foods. The allergy shots for the inhalents made a big difference. There are some foods I cannot eat, including raw green peppers which raises questions about the nightshade family but that is another story.
hidden foods meaning they show up very often in things you wouldn't expect and under different names. For instance, corn is closely related to cane sugar so during the elimination period, I changed to beet sugar.
I am starting to wonder if allergies play a big part for me. I had my very first bout of CH in February 2013. I had regular bouts every couple weeks all summer long. In September I started lemon bioflavonoids and had a 7 month stretch of almost no symptoms. I had a flare up in early April and then a few weeks I felt better, now I am in a 2 week stretch of another bout. It is allergy season... Maybe my 7 month good stretch was because it was no longer allergy season? I always thought the lemon bios gave me the relief (and I still believe it gives me at least some relief) because it started so quickly after starting them (I felt better just 2 days later!) but it could be because allergy season was ending too. Hmm. Something to think about. I had allergy testing last summer. I found a doctor on my own (which was a mistake) and said I wanted to see if I had allergies because it could possibly make my Cochlear Hydrops worse and he didn't really know anything about CH or MM. He said I was allergic to some of the common seasonal allergens like mold and suggested an over the counter medication. It didn't help much so I stopped taking it. What I didn't know until recently is that supposedly only allergy shots get "deep enough" to help the inner ear and allergy medications generally wouldn't help. I am considering seeing my ear specialist to see what he thinks about the idea of allergy shots. Sorry to hijack your discussion. But I am glad to hear you are getting some relief Vasu! It is always encouraging to hear from others with CH that are getting relief.
Hi Redbird11, I "hear" you . I have been under the spell since January and I had my longest stretch of good days from Sunday thru Friday last week (5 days). The best I had prior to that was 2 days and that on high dose steroids. The roar and distortions started last Friday but honestly they haven't been that bad (I'd say about 60% of their typical intensity), so I keep my fingers crossed that I've turned a corner. I may be speaking too soon but it seems to me that CH is a slightly different beast than classic MM, and based on anecdotal evidence, it seems like Dr. Derebery's treatment of allergies + Famciclovir seems to be helping CH sufferers more than classic MM sufferers. I know you just had a baby but if/when you can, you may want to see her. It is too bad that her approach is not being tried in other places. It feels like neurotos are stuck in the middle ages knowing nothing better than diuretics and lo-so diet. Of course, now the repertoire has "advanced" to steroid shots in the ear. But this whole experience has taught me great lessons. I've accepted now that I may never get back my pre-CH life and that is still OK. I cannot believe how quickly I made peace with the tinnitus after having felt like pure hell for a few weeks. Now I know that it fluctuates a lot so I don't get worried if it shoots up suddenly. The mind is an amazing thing. .
That's interesting June. I was found allergic to both cane and beet sugar. Dr. D. suggested honey, agave, or "stevia" as substitutes. Never heard of Stevia before but I will look into it. But I am using coconut sugar (which I was using before anyway). I like that its sweetness is a bit milder.
You are so right about how it seems most neurotologists say to do a low sodium diet and take some diuretics and be on your way. Its frustrating. I was on diuretics for 4 months with no difference made whatsoever. The sad thing is that the doctor I go to is supposed to be the best ear specialist in my city! Any time I try to do a search for a good neurotologist he is always the first on the list! I would love to be able to see Dr. Derebery one day. And yeah it is crazy what we can learn to live with. When the tinnitus started last year I thought my life was over. How can I live with this forever?! Once I came to terms with the fact that I will never hear complete silence again I realized it wasn't so bad. Hey, I have had it for 16 months now. I can do this. I just don't like this crazy fullness feeling In have going on right now. Yuck.