I've had a constant migraine headache for 24 years. I'm 69 now.
I've been to headache specialists, headache hospitals, and taken every kind of medicine including Oxycodone and Fentenal and most every other kind of medicine, along with Botox, nerve blocks and freezing. The only thing I can do is go to bed in a dark room and try to sleep through the worst of it.
I usually get sharp earaches with my headaches along with the regular things.
@Liberty Bill I am so sorry to read this. It must be so frustrating to have gone through so much and still face such a challenge. How long do they take to pass if you can escape to your dark room to rest?
We are here to support you, and thank you for your message. I'm wishing you a gentle day, Tracy (Team Member)Headaches never go away. For a number years, I lived with constant "10" headaches, and I spent much time in doctor examination rooms, emergency rooms and bed just trying to get by. I was a computer teacher in adult education, but had to retirre 15 years early because I couldn't drive anymore. In resent years they are mostly in the 7.5 to 8 range, and when they reach 8.5 I go to bed and stay there until I feel well enough to get up.
Now, for the most part, I'm in the 6 to 7 range, but I am not completely certain of this, because in a sense, I have gotten use to pain and have built up a tollerane to the pain. When doctors and such ask me to give headaches, or other pains in numbers, it's hard--Many times, pain goes past the number 10, so I mainly look at the faces under the numbers on the pain chart and work out my number based on what my insides feels like. I worked for 4 years with the strong pain, and I am able to appear well in appearance, but ready to cry in experience.
When they were at ther worst, and even now when they are really strong, my eyes ache, both ears, my jaws and teeth also. In my temples, I always have this picture of the sparks you get when you touch the ends of battery jumper cables together, and a picture of an ice pick being slowly pushed into my ears.
I stopped seeing doctors for the headaches about 8 years ago. I don't take any medicine for them, as I also have AFIB, and over the counter meds aren't good with the heart condition, plus, I don't want to take any meds--none have ever worked anyway.
In spite of it all, I am a blessed man. I have a beautiful family, a 5 year old Labrador Retriever who adores me, and my life is hidden with Christ in God. 😀
I could go into MUCH more detail if someone would like, but this is Ok for now.
Thank you for listening.
Bill
Hi Bill- so glad you are here sharing your journey with us. You are in good company as many in our community are living with chronic migraine and have been disabled by it as well. I am and I have. I understand and have such compassion for you. It is an incredibly depleting disease. It sounds like you have tried so many solutions to no avail. Sometimes we get to the point in our journey that we grow weary of trying new things because we get our hopes up just to get them dashed time and time again.
As you said, we grow accustomed to living in pain 24/7. Our tolerance increases- our life changes. You are not alone in this and it sounds like you have done your best to make the most of life despite this demanding condition.
I will share with you, if you ever decide you may have the energy to seek a solution again, that there is a new class of drugs that have been developed since you last were evaluated and treated. They are called CGRPs and you've likely seen ads for them (Aimovig, Emgality, Qulipta, Nurtec, etc). If you're interested, here's more information on them: https://migraine.com/cgrp-new-direction-migraine-treatment. I did a quick search on the internet and it appears they are thought to be safe for people with AFIB, although I'm not a doctor and this would of course be something you'd need to discuss with yours if you were interested in learning more.
I don't like when people push solutions on me when I'm tired of trying them- so please forgive me for raising this if it doesn't fall right- but I felt you should at least be aware of this approach in case you hadn't heard of them. They've had a pretty good success rate.
Now, back to the more important part- your dog! What's his/her name? I have a goldendoodle who is the love of my life - and gets me through so much of the complications that come with a life of chronic pain. Aren't dogs incredible?
So pleased to meet you - glad you're with us! Warmly - Holly (team member)
Hi Tracy,
WOW...A real personal responce!!!! Geesh!!! Thank you so much!!!
My Dogs name is Buddy. He will be 6 years old this January 23. I have had him 4 years on January 21. My daughter found him for me at the amimal shelter. He and 2 other brothers had been given up by the owner at the sheriff's request because of neglect. His brothers had been adopted, but he had not. It wasn't instant love, but it was instant dedication to him. The love came a few days later. His original name was "Shadow", but I changed him to "Buddy"--He's my buddy! He is half black Lab, half Pit and half something else--My dentist said: "That's alota halfs." He is one of the joys of my life!
The bad thing about having Buddy is that when I'm sick, exhasused, etc, it's zero and the snow is blowing, or when it's 95 and hot, I have to walk Buddy to burn off some of his energy and for him to go to the bathroom. The good thing about having Buddy is that when I'm sick, exhasused, etc, it's zero and the snow is blowing, or when it's 95 and hot, I have to walk Buddy to burn off some of his energy and for him to go to the bathroom. Either way, he keeps me active for about 2.5 miles a day and it's good for US. 😀
I appreciate you looking into my situation, I REALLY do! I have tried so many medicines and procedures. I spent 21 days in a headache hospital in Michigan when we tried 3 days of a protocol meds every 8 hours by IV, and abortive meds the same way--after 3 days we tried others and so on. A year of so later, we tried another 10 day hospital stay but nothing worked out then either.
My doctors DID NOT do pain meds, and I never once asked about them, but after about 3 years of no results, they offered me Oxycodone up to 3 days a week and 62 mcg of Fentanyl in a dermal patch to be changed every 3 days. I thought about it for 2 months, and then agreed to try. A couple of years later we repeated thee hospital treatment for another 10 days, and tried nerve blocks, Botox and more meds. My doctors were outstanding, but nothing worked. Finally after 6(?) years, my doctor moved, and the medical expence was huge and so I quit going. Since them, about 8 years now, it's just been me.
When I went to Michigan, my neurologist spent at least and hour with me every apointment, I spoke to a psychologist, and had physical therapy of some sort when needed. I went to a neurologist specializing in headaches near my home, and he spent 5 minutes with me and perscribed a medicine--I never went back.
The first thing that pops into my mind when I see most any medicine advertised on TV is that after the wonderful indroduction of the new med, everyone is usually smiling, at a cookout, dancing, biking, etc., while the narritor is going over all of the many possible side effects, and at the end, the narritor says: "So talk to your doctor and see if (New Med) is right for you."
Since the big COVID blow-up, I trust the pharmacuticle companies even less, and I try very hard to make informed and researched decisions on what I will and will not do. I appreciate my doctors, and like all of them that I have. I am Extreamly open and honest with all of my health care providers! Informed, experienced and friendly doctors are a must for me! I am open to suggestions and wholey participate in my healthcare, but I refuse to be talked down to by doctors.
I am sorry for any inconsistancies that may seem to appear in my wirting, but I'm writing about many things, many procedures, many meds, over a lot of time, and a lot of time since I tried to put things together. However, I do have a complete file from the hospital of my visits and from my doctors. I hope I do not have any misspellings but my eyes are very blurry at this time.
Thank you Tracy for your interest in me and my story, and thank you everyone else who is reading this. I am open for any questions. A little more...In spite of the pain, disability and limitations, my life if full of Joy! I have a wonderful wife, 2 grown children, 2 grandsons, Buddy, (3 other Labradors who have passed, but were with me throught it all--Tar, Max and Spinner.) many friends, some close friends, and some close friends who are also my brothers and sisters in Christ. As I mentioned in my last writing: "I am a blessed man!" Thank you all. Thank you Lord Jesus. Amen.
Bill
One thing I forgot to mention in my last comment is how much your words about pharma advertising resonated with me! Everyone looks so happy, overjoyed and healthy, and the legalese at the end... I happen to live in the UK now, which doesn't allow pharma advertising on TV (or political advertising, which are also pretty longwinded and annoying!). I always find it shocking to go home on that front - sitting down in the evening to watch something with my parents, and 99% of the hour feels like it's a pharma advert! I end up taking home the songs in my head.
But they work - for the company - or they wouldn't be done. My stepdad put it perfectly: if I didn't have an advertisement, how would I know what to ask the doctor for? My jaw fell on the floor. I told him my view was that the doctor was the one with the knowledge and ability to know what is right for us - the advert is just trying to sell and create the exact mindset he carries.
I hope you and your loved ones have a lovely holiday season! Warmly, Tracy (Team Member)
Tracy and Holly--I see now, too late that I'm writing to two ladies. Sorry for the confusion! Thank you to you both!
BillHaving too many supporters is not a bad thing - we are indeed real and interested! 😀 It sounds like you have 'done the rounds' with interventions, and pretty significantly so! I hope each year for new breakthroughs and advancements that can help people in very challenging situations and who have been through the proverbial wringer of existing treatments.
I love the way you described the 'two sides of the walking the dog' coin - it is a good reminder that we can choose how to view every situation. Gratitude for a joy filled life is a treasure. Thank you for the photo of your sweet Buddy too - I love getting to know people AND their fur-people! Warmly, Tracy (Team Member)
