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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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Hello all!! I was just researching on the web about this strange phenomenon that has occurred over the past month......actually ran across a thread from this forum and recognized many of the names here!! I want to post this question again.
I have had problems temporarily losing my hearing in both ears (it fades out quickly to where I can hear almost nothing and then slowly returns to normal after rushing noises or a deafening hum or a roaring sound (tinnitus). I thought it was med related.....went off the Lyrica thinking that was the culprit.....it is still happening almost daily.....(AND now I'm in worse pain from having come off the Lyrica on top of it). It happens about once a day so far and takes about 10-15 minutes for it to normalize again. My hearing seems "normal" when this symptom is not present. I do have a history of TMJD and they have done every test imaginable on my ears in the past 3 years.....MRI, contrast MRI, CT scans, Tomograms, etc....they all showed some bony or joint abnormalities but nothing earth shatteringly wrong (except the unexplained extreme pain I am in constantly in my left ear). I asked my pain doc if this could be from the RSD or if the TMJD could actually be RSD.....he said no. I am wondering what all of YOU have experienced?? Does anyone have any pertinent articles on hearing loss or Meniere's disease and RSD???? Is there a connection??? I should also mention that often when I experience this, I also feel EXTREMELY weak......cannot pick up a glass to drink or a pillow to lay on. It is literally like my limbs do not want to work properly. My blood pressure does seem to be somewhat low at times, but not alarmingly so. I have had pretty wild swings in my BP since my diagnosis 2 months ago ("wild" for me......120/80 to 80/40 throughout the day). I just cannot make sense of all of these bizarre symptoms and cannot afford to go to 10 different docs and have 20 different tests run to rule things out. I would be very interested in anyone's input who has experienced some of these same symptoms and what their docs did about it. Thanks in advance for any replies!!! |
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#2 | ||
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Here is one MD's opinion,
http://www.tmj-pain.com/tmd-related.htm If I was you, I would study the 12 cranial nerves. |
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"Thanks for this!" says: | MominPainRSD (01-30-2009) |
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#3 | ||
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I've had a very wide range of symptoms. Some are serious but most are more laughable like polka dot pain. There's been a lot going on with my ears since the beginning including a lot of tinnitus and a little of the dropping out.
I take cod liver oil for arthitis and it causes increased wax in the ears which sometimes makes them itch uncontrollably. It's almost more like a panic attack than pruritis. Much of the trouble is in the left ear but I cut my right ear in the spring and now have a little RSD in it. There's never a dull moment. ![]() |
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"Thanks for this!" says: | MominPainRSD (01-31-2009) |
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I too have TMJD, I've had it for years, long before my rsd diagnosis.
Following a 2nd infusion of Pamidronate a few years back I had a horrible reaction that cause loud roaring motor sound in my head. Pamidronate is from the family of bisphosphonates. While they were able to calm it down with steroids and 4 weeks of HBOT the loud ringing kept returning. There was no explanation for this to keep happening. I was taken off didrocal and it is recommended that I avoid any medications that would be prescribed for bone loss. I found when placed on an antibiotic that they noise levels increased so I was switched to another medication for that infection. My dr. did not want to keep giving me steroids because of the osteoporosis issues with rsd. Ultimately my dr. ended up giving me a steroid injection directly into my ear drum (yes very painful) but well worth it because it stopped the noise. I sustained some hearing loss but it is only in the low tones. Now I know why Van Gogh cut his ear off and was considered crazy. Thank good they were able to stop it because I did feel like I would go crazy too. I still have some low humming from time to time and occasional mild vertigo. I am very cautious about taking any new meds and do what I can to stay healthy, avoid caffeine, sugar, alcohol, etc... I am now taking Ginkgo Biloba and Coenzyme Q10 as some studies have suggested that they may help. Here is a link to my government health site that offers information about tinnitus. http://www.healthlinkbc.ca/kbase/top...it/hometrt.htm I hope you are able to find some help for this. MsL |
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"Thanks for this!" says: | MominPainRSD (01-31-2009) |
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#5 | |||
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Further to the above posting I did also want to mention that my TMJ did become worse after my RSD diagnosis. Although the doctors tell me they are not related I believe it is all interconnected. Of late I have been focused on reduced inflammation, improved circulation through diet and exercise and feeling much better overall.
Here is the link to the information about managing TMJ, there are some good suggestions. http://www.healthlinkbc.ca/kbase/top...69/descrip.htm |
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"Thanks for this!" says: |
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#6 | |||
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Magnate
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Hi MomInPain,
I am so sorry to hear that you are going through all of this and really hope you start feeling better real soon ... I would definitely mention it to your Pain Management Doctor, GP etc as it isn't fair that you should be going through all of this and there might be something else causing your problems other than your RSD that can be easily fixed!! It's important that you rule other things out, don't ever just assume that everything is RSD - I know most of the time it is unfortunately but it's still important that you get it checked out! ![]() I also suffer from temporary hearing loss that can happen a few times a day! I have noticed that it is worse when the pain is at it's highest and it also seems to be worse when I have gotten out of the bath tub!! I also have a smell in my left ear which is worst affected and it feels a bit crusty and like it is blocked with something. I mentioned it to my Physical Therapists and they said that it sounded like a nasty ear infection and to go and see my GP so i'm going to make an appointment as I read somewhere on the internet that people with RSD are more prone to ear infections but I can't seem to find the article now unfortunately! It's really strange though as the symptoms aren't there all the time and just come a few times a day!! I'm thinking about you and please go and see your doctor and rule other possibilities out!! I hope you feel better real soon and please keep us updated when you can! ![]()
__________________
To the World you may be one person, but to one person, you may be the World. |
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"Thanks for this!" says: | MominPainRSD (02-01-2009) |
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#7 | ||
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Word up! I have been telling all my doctors that I can't hear for months (well, I can hear but it's different from how I used to hear)! It's like my ears are plugged?? I don't know if that's the best descriptor, but it's as close as I can get. Keep me posted on what you find out, because when I can't hear I've been yelling at my daughter and husband for mumbling!!! Even if it's not the RSD, at least they'll have better enunciation - heehehehe
Word Girl |
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"Thanks for this!" says: | MominPainRSD (02-03-2009) |
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#8 | ||
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Quote:
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#9 | ||
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I dont get the fading in and out. I've just been suffering from a lot of ear infections. Normally I can home treat an ear infection and it will go away in 2 weeks. Since injury they last longer. The last one I had I just got over a few weeks ago and had had it for almost 2 months.
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"Thanks for this!" says: | MominPainRSD (02-03-2009) |
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#10 | ||
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Today many if not most Americans are carriers of the infection. Most infected people are symptomatic, but the severity and type of the symptoms varies greatly. The microbes often invade tissues that had been injured: your chronic neck pain or sciatica really may be a Bb infection. The same may be true for your chronic TMJ problem, your adrenal fatigue, your thyroid dysfunction, your GERD and many other seemingly unrelated symptoms.
http://www.leaparizona.com/klinghardtlookbeyond.htm |
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"Thanks for this!" says: | MominPainRSD (02-07-2009), Mslday (02-07-2009) |
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