Life-Long Learner, Taught by Chronic Disease and Tinnitus

Hello Friend! I'm honored you stopped to discover more about me. I'm an optimistic, strong, middle-aged woman living on her own in a small city in Tennessee (USA). I am building my dream business, a non-profit corporation benefiting adults like me, with Epilepsy. I also serve as Epilepsy Mentor helping others along their journey to feeling better through biblical principles and personal development.

My journey with tinnitus was first discovered at age 5. Diagnosed at age 20, I remember sharing with the specialist that I thought everyone had noise in their head. My diagnosis sprouts from a rare genetic brain anomaly that also causes unpredictable, medically uncontrollable seizures and intractable migraines. Yes, chronic disease fills my day, but does NOT rule my life!

I look forward to sharing support and information here, making friends and being connected with people that live with what I call an eternal buzz.

 

Hi @TenaciousTonya!

Nice to meet you. I'm sorry to hear of all your medical issues, but happy that you are coping and living your life! I have neck/shoulder/back chronic pain and migraines. I've been dealing with migraines for quite a few years and they have gotten worse over the past few years. Chronic pain caused by chiro who was supposed to help with migraines (although that seems to be getting better) and tinnitus as a result of migraine meds (Cambia). It has been tough as I was quite healthy (minus migraines) up until 1.5 years ago. I'm still getting used to my new comorbidities.

It's so nice to hear that you are doing something to help yourself and others - it must be very satisfying! I would like to do something similar, a little difficult right now with COVID-19 lockdown here in Ontario, Canada right now.

Anyway, I hope to speak to you more if you're interested. I think we're about the same age. Hope you're enjoying the day!

Sarah

 

Thank you for the welcome, Sarah.

My life is an open book, so feel free to ask me anything. I make a daily effort to remind myself to keep up the good work of living just one more day, because I never know who I will meet and what our future will create for ourselves and others. When you train your mind to look beyond the pain (not ignore it) you can begin to do just about anything.

I'm currently testing a theory (I always test on myself) that says tinnitus, or certain types and levels of it fade and are easier managed with acupressure. Is this something you have heard of or tried yourself? Today it took one of the 7 sounds in my head completely away. If the good effects continue through the weekend, I'll consider this good therapy for me.

Unfortunately, my day and several days before was invaded by cluster migraines - so no enjoyment of the day.

But, it ended well when I heard from you. Thank you for your support.

Tonya

 

Hi Tonya,

I hope you are doing better after your cluster migraine episode. I know how awful it can be when you're in that much pain for consecutive days. I get that sometimes where even the almotriptan doesn't work. Do you have any medicine that at least helps relieve some of the symptoms?

I think you are so brave for getting through all of your difficulties AND having children! Wow! You are so strong. My deepest condolences for the loss of your daughter. I can't even imagine how heartbroken you were/are. I hope that your other two children give you great joy and take away some of that pain.

It's amazing that you are continuing to help others with similar issues - I'm sure it is greatly appreciated! I know I'm glad that you came to this site. I find it hard to relate to others, because tinnitus is just one of my issues and it makes me feel alone much of the time.

I have yet to try acupressure, but have tried physio, chiro, massage, osteo, and acupuncture. Is it like trigger point therapy (I have tried this with a physio)? They all bring some temporary relief, but nothing long term. I am seeing an upper cervical chiro which seems to be helping, but the healing is like a roller coaster. I can have 2-4 weeks of feeling pretty good and only have to take the triptan 5-6 times along with an OTC muscle relaxer. Then I can have a really bad week or few days where the pain/migraine just pushes through. I have not been able to distinguish a pattern as of yet. Even went to a gynecologist.

I am currently on a strict diet for the past two weeks after taking an IgG food sensitivity test. I also found out that I have candida, so I will be working with a Naturopath to get that resolved. If this doesn't work, I don't know what I'll do. The neurologist wants to put me on amitriptyline, but I am afraid that it may worsen my tinnitus. It's a last resort.

Anyway, I hope you are having a better day and I look forward to talking with you more. It's a beautiful day here in Ontario.

Sarah *hugs*

 

I'm trying acupressure, too! Which point worked so well for you, if you don't mind my asking?

 

Hey @Psych.

This is completely off-topic, but I want to like your profile picture and I can't; so I'm just going to like the last comment you made instead.

 

Oh, that's so nice! Thanks for taking the time to share the compliment.

Yours is nice, too, btw. I feel like I should know what it is, as I do like art. What is it? Oh, I see your name is "Damocles"... is that a sword over the guy's head?

 

It is indeed my friend. The banquet of the great king Dionysius; for don't we (tinnitus sufferers) all live with a similar peril tentatively dangling above our heads?