Is there anybody out there that has suffered from BOTH Tinnitus and Erythromelalgia at some point in their life?
Hello, yes I do suffer from both. The ringing is always present in my right ear.
Yes, about 8 weeks ago it started for me. I am trying to figure out if it possibly is coming from one of the medications I take or combination of both.i’m working with my doc on this matter. I can deal with it during the day at night I sleep with a sound machine turned up pretty high.
I am sorry to hear that…So do you have Erythromelalgia, too? Or have had it?
Meantime, I have heard amazing things about the pillows that you can connect with your smart phone to play sounds. For instance, you can download one of those apps where you can listen to birds, a fan, or calming music.
That might work for you.
I also suffer from both, with tinnitus in my right ear all the time. However I have had the tinnitus for about 4 years and EM for a year so the tinnitus was not caused by medication in my case.
I definitely think there is a correlation…I had tinnitus…than erythromelalgia…than tinnitus. I am meeting with different Neurologists to discuss what I have found.
What are you taking for EM?
I am trying Low Dose Naltrexone which I am buying privately as there seems to be a lack of interest in my condition from the NHS (UK). A general consultant at the hospital diagnosed EM and referred me to the Neurology Hospital in London. That was mid December and I am still waiting for an appointment. I decided I might as well try LDN as I do not take any other medication. Still early days as I am slowly increasing the dose and know that it can take several months to work if it does have any beneficial effect. Fingers crossed. Meanwhile I am just making lifestyle changes. My greatest pleasure was walking so I really have had to change my mindset.
I have to tell you that I do not have EM any more. It takes about 2 years for the nerves to heal. I was very sick…I could not even turn the page of a magazine or use a phone as the pain touching something was so severe.
I was hospitalized and on morphine.
That being said, the doctor I saw was one of the top authorities in the world on EM and they put me on Nortriptyline. I started with about 20 mg and SLOWLY went up to 125mg for a few months. I would say within 6 months I was doing a lot better…and 2 years later I was almost pain free. Now it’s been 8 years later and I am 99.9% fine.
I hope this is helpful.
Thank you so much. It is encouraging to know that some people do recover. I think I am lucky as my symptoms are not so severe.
Do you know whether your EM is primary or secondary, please?
I would also be very grateful if you could tell us who your consultant is and where you are please!