Hi I have horrible pulsatile tinnitus so I hear my heartbeat and hissing most of the time. I also have a range of symptoms including neck pain, burning tongue on left side, strange sensation in throat, gruff voice strange taste in mouth, inner ear pain too. I have had it 4 years now and like you hate the crazy noises in my ear. Before I found this site I went to so many ENT consultants, neurologist etc - had loads of test all to be told I was just a bit anxious! I decided that I needed to find some help with the noise ( which is definitely related to the pain) so I went and had CBT therapy… and that saved me… honestly I don’t think I would be here if I had not had this and got back some control on my brain that was crazy. Then finally after 3 years I discovered this site, read the newbies guide, read all the symptoms on the list and discovered I have 90% of them. Looked at the doctor guide and got a referral to dr axon. More tests and now thankfully waiting for a date… he has a 9 month waiting list… hopefully end of jan and I am having 2 procedures due to my jugular vein compression. Really hoping it works and I can gain some normality. This site has been fantastic. For the neck pain, swollen lymph gland I also use CBD balm which really helps
Thank you for posting your story & I’m so glad this site has given you the information you needed to get to a good doctor & get a proper diagnosis. So many of us have found both the right doctor & the information/support we’ve needed to get through ES. I do hope you’ll be able to get your appointment w/ Mr. Axon by the end of this month. It’s unclear if you’re waiting for an initial appointment with him or for a surgery date but whatever the case, may it be soon!
Please feel free to ask questions, sound off, complain, celebrate healing - whatever you need to do - we’re here for you!
Hi I am waiting for an actual surgery date… the wait for this is difficult as feel my symptoms are getting worse each month. If anyone has any help on how to stay calm and focused that would be great
I had surgery with Mr Axon; I had a 6 month wait for the 1st surgery which was very tough, as I was starting to feel pretty grim. I have to say the only thing that got me through was my faith & the support of my family- don’t know if you have that but hope you do. On a practical level, I used to often sleep in a recliner as being more upright helped at night. Try not to stress - easier said than done!- as that increases blood pressure & makes symptoms worse too, but it sounds like you do have that under control.
One positive though- once the 1st side was done I found the vascular symptoms decreased alot, so hopefully that’ll be the same for you, & the wait for the 2nd op wasn’t as bad as for the 1st. Good job as that was nearly a year!
Thinking of you, & hope all goes well!
I must say I’m a fan of medicine when needed. I could not concentrate on the research and schooling my four young children in September when I was still pre-diagnosis. I cried sooooo much. My pcp suggested 20 mg of Celexa. By the 4th week on it I felt steady and able to not go into despair. I plan to go off it when this is all behind me. Everyone’s different. I needed to calm down, stop worrying and sleep at night. It was fate-appointed I guess that I didn’t have what I needed inside me chemically to cope. I am humbled but found my prayer life was easier when I got some medicinal help to bring me up a little to the point where my racing thoughts quieted a bit.
Good advice, SewMomma. I probably had less anxiety because I was already taking meds for that prior to my diagnosis. I’m hoping to wean off mine in the next year as well.
Be careful when you decide to stop the Celexa. Work w/ your doctor, & do it by baby steps. Most anti-anxiety/depressant meds can have devastating side-effects if you stop them cold turkey.
You’re absolutely right. I took it during our daughters heart surgery and even when weaning with the recommended protocol there was one day of a headache I’ll never forget. I had to wear sunglasses in the house . Still, a million percent worth it, then and now. I noticed myself spinning this morning when I woke up - “surgery’s not gonna work” and worse thoughts. But I quickly pulled out of it and I owe that to the medicine. And God’s grace as well.
You’re so close to your surgery date! YOU CAN DO THIS AND IT WILL MAKE A BIG DIFFERENCE!!