Had a good run of symptoms under control for a good 6 months and out of nowhere my head feels like it is going to blow up. Pressure on my ears, hearing loss, no tears, no saliva, and both cheeks are swollen up like baseballs. I am so dizzy I can barely stand. Dr has tried antibiotics (3 different courses), nasal sprays, antihistamines, sent me to an ENT who did a cat scan of the sinuses, scoped my sinuses, tested my hearing loss (duh!) and now I am on my second strong dose of prednisone with no relief in sight. Dr had me stop the plaqenil for 2 weeks to see if it was affecting my hearing but I started it back up again because I think without it I was getting worse. Has anyone else experienced the ear, dizziness, cheek problems? My Dr is still sketical if it is SJS related. I am miserable and looking for relief, even briefly.
What was said about your sinuses? Have issues with them?
I know that this may sound strange to you, but have your tried a warm cup of Peppermint tea?
It helped me deal with the pain and the swelling went down. I hope it helps you also.
ENT said sinuses showed no abnormality, just some inflammation. I've been drinking regular tea, any special reason for the peppermint tea?
I have been getting dizzy spells for a number of years. For about 3 years my ears have felt clogged/stuffed and I have some hearing loss and constant high pitched ringing, worse in my left ear. I have also had people mention how swollen I look in the face.
Liz
Any peppermint should help. The herb works on the stomach meridian which is the same one that connects to your glands. It seems to have a calming effect.
LizM have you been checked for Menier's (sp) disease? I have that. An abscess tooth caused similar issues.
My cheeks and lips have been swollen for 4 months.
Will it EVER go away? Or is this the new normal??
I'm so sorry that you are going through this. It is SO discouraging/frustrating/scary when we are going along pretty good (actually feeling kind of 'normal') and then something like this flairs up out of the blue. If you are like me, you try so hard to analyze everything -- your every move, bite of food, bit of stress, medication, etc -- to find the trigger. But too often it's a mystery.
Do you live in an area where allergies could have plugged everything up? Here in Indiana they are harvesting crops right now, plus the ragweed pollen is off the charts. My mouth/sinus symptoms had been pretty good for about six weeks but just flared up miserably in the last few days. So, I'm back again to analyzing if, this time, allergies could have set me off.
I've found that a Bed Buddy is very soothing. No...not THAT kind of bed buddy! ;) It's a rice bag that you heat up in the microwave and wrap around the areas that ache. It might at least feel good against your swollen cheeks and ears.
I hope you find answers quickly. Take care of yourself.
Deb
Quote from: Joe S. on September 10, 2010, 11:41:28 PM
Any peppermint should help. The herb works on the stomach meridian which is the same one that connects to your glands. It seems to have a calming effect.
LizM have you been checked for Menier's (sp) disease? I have that. An abscess tooth caused similar issues.
Joe S:
I brought these conditions to my PCP after they appeared. She tried the diuretics and they really had no effect on me. She then referred me to an ENT who did an audio exam and said I had hearing loss in both ears. He attributed the problems to being around loud noises and getting older.
Last week, when I saw the Rheumy, she asked about any ear problems I may have and I told her how my symptoms began. She is of the opinion that it could be related to my AI issues because they all started about the same time. I go back to see her in December and I will bring it up again.
Thank you.
Liz
Rae, could you tell me exactly what's swollen in your face? Are these your parotid glands or something else like lymph nodes or other glands like sub-mandular? Additionally, has your doctor determined that you have a bacterial infection or is this an inflammation issue?. If its inflammation, the swelling won't respond to anti-biotics. No possibility that it could be mumps or some other involvement?
If its an infection, you should be feeling very ill and sick to your stomach. Inflammations hurt but don't make me sick to my stomach. I just had a bad infection less than 2 weeks ago and have a list of anti-biotics that I cycle thru, but I just want to make sure we're talking about a parotid gland infection and not something else.
LizM, menier's (sp) disease is an AI on one of the lists I looked at.
Quote from: Joe S. on September 11, 2010, 08:49:28 AM
LizM, menier's (sp) disease is an AI on one of the lists I looked at.
Thanks, Joe S. I will bring this up with the Rhumy when I go back in December. The more I read, the more I see just how long I have had these symptoms. They were so random, no one thought to put them together and find an answer.
Liz
Hello, I just had a long bout of swollen cheeks and puffy feeling in my jawline. The magic bullet that worked for me FINALLY!!!! Was a dose pack of Medrol(steroids) and Clindomyacin with Flagyll. Fixed it right up for now. I am also having another CT scan of sinuses this coming Wednesday just after having a nuclear bone scan of my entire body..including jaw/facial bones just to make sure I didn't have bone infection in face.
Doc thinks that the Flagyll was the real helper since it is for anerobic bacteria like that can be found in glands and soft tissue.
Ask Doc about it and maybe give it a try.
Mary
Thank you everyone for your input. My swelling is from the base of my ear forward along the jaw line. My cheeks feel 6 inches thick! Very annoying. I have no fever and we tried the antibotic route anyway and it didn't work. It was a bad summer for allergies and we tried that round of meds too. Someone suggested OTC ear drops for the ear pressure so I went out and bought some today and will try them tonite. I think the dizziness must be related to the ear problems but I have my annual visit with my cardiologist (I have SVT) on Wednesday and he is the best doc in the world so I will talk to him to make sure its not heart related. Tried to get in to see my Rheumy last week but of course she was out of town. I will try again on Monday. I just can't believe the prednisone hasn't helped. That was always my magic bullet. I am just so sad that I have to have this now. My son is getting married in Michigan in 2 weeks and I was so hoping to be semi functioning. I thought my biggest problem was going to be trying to eat gluten free while out of town and now I can't even walk without staggering. I'm sorry, I needed a moment of a pity party. I will try to be optimistic-heck, its two weeks away. With these diseases, two weeks can be a lifetime. Anyway, if I can get in with the Rheumy maybe she will have an idea. Someone else told me to try Dramamine for the dizziness-any thoughts?
Rae, please try and see an ENT for the swelling. If its parotid related (which is the location you described) an ENT is better for treatment of that issue than a Rheumy. I get about 3 to 4 parotid gland infections a year and several inflammations. I always go straight to my ENT for treatment.
Hope you feel better soon and can make wedding in good shape!
Hugs,
Daisy
Thanks daisy. I am going to see what doctor can see me tomorrow. Its all so confusing. I thought it wasn't an infection since both sides are swollen and I don't have any fever. Hopefully I can get in to a doctor soon. Meanwhile, I am finding relief with heat and ear drops. What treatment does your ENT give you for parotid gland issues?
If its truly a parotid gland infection, my ENT will get me in the day I call and he cycles me thru 3 different types antibiotics so I don't develop resistance to one particular type. He has taught me massage techniques to minimize the number of infections, has put me on philocarpine lozenges to increase saliva production in addition to salagen (we don't have access to Evoxac in Canada), has taught me to recognize the difference between parotid inflammation vs bacterial infection and has given me some home treatment techniques for both to reduce the pain and discomfort. He also takes excellent care of any sinus issues, throat issues I may have and also keeps a close eye on my lymph glands for any possibility of lymphoma.
My suggestion is to get yourself a good ENT if you are able, because even if you're not able to get one right away, this issue or something related will likely come up again in future.
Daisy
Sounds like you have an awesome doctor. Its such a shame that the quality of our lives is so dependent upon whether we match up with a good doctor or not. and who has time or money to shop around. I am so grateful for sites like this and the good people who participate because it is so important to be educated when you see the doctor so you can ask the right questions.
Rae, you are so right when you say that. What I didn't mention but should is that this ENT is probably the 4th one that I've seen but is the only one that I've hung on to (with both hands lol). I actually met him when I was hospitalized for a parotid gland infection gone really bad and my treating physician called him in for a consult. I recognized right away that this ENT knew what he was doing (I had already been in the hospital a week up to that point with this infection and no one seemed to be able to get it under control before he was called in). He got my infection going in the right direction within 24hrs and about 4 days later the gland had completely returned to normal size and I was discharged the day after that. When this ENT came back to check on me in the hospital before I was discharged I asked him if he would be willing to take me on as a patient and he said he would. Can you imagine? I've never heard of a specialist taking someone on without a referral before. He's been taking care of me for about 6 years now and is just terrific.
Hope you find someone like that to care for your issues too!
Daisy
Need a moment to vent!! Just got back from a very frustrating visit to the rheumy. She didn't think the swollen glands and ear problems were related to my AI issues and told me to find a different ENT. Her rationale was that if I am on prednisone and still have the swelling, it must be for some other reason. I agree with finding a new ENT, the other one was useless and dismissed me as a complainer, but I am blown away as to how my rheumy treated me. She was so good in the past, but this time she said my blood work was all negative so there really wasn't anything for her to treat. Meanwhile, I get to be miserable while waiting to get into another doctor and start all over. I hate being at the mercy of a doctor. So, I will rely on OTC remedies to keep me with some existence of life until the 1st week of October when the new ENT can see me. Couldn't get in any sooner. So frustrating......... Thanks for listening.
I love Peppermint tea. Soothing to the stomach and relaxing
Actually, the essential oils of peppermint is anti-bacterial.
Pegasus