Tried Everything
I am new to this site which after over 10 years is crazy that I am only now coming on here. I am not trying to give a sob story but thought I would tell a little about myself and see what or if any advice is out here or just find people who understand! Where to begin, I started having headache's and migraines a few months after the birth of my son, I also suffer from depression and anxiety which I know is normal but what I didn't know at the beginning is just how much this pain would exacerbate my depression and anxiety. It took me 8 years to finally be approved for disability but have a review I think coming up, and I swear that since I was finally accepted as disabled all Dr's have stopped really listening and trying. I have tried every medicine and even went back in to a Nuro Dr just to see anything new they might say (lets just say she didn't have anything but to send me back to a Pain Dr). Now the Pain Dr I do understand is trying to a degree by trying a Nerve Block (made it worse), Ketamine Infusion (sent me spiraling into depression both times) and now wants to try Botox but still after months hasn't given me anything to stop my hurting every day or to help at home! I just sometimes feel like I can't live like this anymore the ER won't help, the Dr isn't really helping and I have no life, no energy, no anything left in me!
This coming week I will see a Psychology Dr at my Pain Specialist office and we are supposed to talk about Ketamine Nasel Spray (I think) and then they want to try to botox. I keep trying everything they throw at me even though I usually makes it worse at this point because I swear they make me feel like I should just be grateful that they are willing to see me!!
Trust me I had a few Dr's say I won't see you because of the medication past Dr's put me on!
Also that lovely medicine (Methadone) ruined my teeth and I don't have any way of getting them fixed even though hey are falling out!!
Any who sorry if this was way to long and I hope there are finally some people or person who understands.
Thank you
Hi
,
Welcome to Migraine.com!! We're glad you found us. This is a wonderful community full of support and insight. No worries about longs posts - that's what we're here for! When you get a moment, make yourself comfortable and take a look around! In the meantime, let me see what information I can share with you that may be beneficial.The first thing that comes to mind is seeking out help from a doctor who is a true expert in treating migraine and headache. These doctors are different from general neurologists as they are certified in headache medicine, all neurologists are not. Neurologists may be fine doctors but have a hard time being experts in one area because they treat many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. A true migraine/headache disease doctor treat migraine and headache all day, every day. Here is more information on how these doctors are different and how to find one;
https://migraine.com/blog/really-find-headache-specialist/
https://migraine.com/blog/seeing-a-board-certified-headache-specialist/
https://migraine.com/living-migraine/change-thoughts-new-care/
https://headaches.org/resources/healthcare-provider-finder/.Do you perhaps take something daily, or near daily to help relieve this pain? Here's one of the problems we can run into doing so. If we take pain relievers and/or acute migraine medications (whether they are over-the-counter or prescription) more than two to three days a week we may increase our risk of something called rebound headache. Other names for this are medication overuse and medication adaption headache. If we are in a rebound cycle, migraine may be more difficult to treat, and we can end up in a daily cycle of endless pain. I'd like to share this information with you here; https://migraine.com/headache-types/medication-overuse-rebound.
I've been down the methadone route for migraine pain. I was on that for 3.5 years many years ago. I don't think know what I know now, I would do that again. At the time, it was the only option that was explored. Nowadays there are new medications available and more on the way!
I'm going to stop now so I don't totally overwhelm you! Will you let me know what you think? Hoping today is a good one, Nancy Harris Bonk, Patient Advocate/Moderator Migraine.com TeamThank you for this information, I have been looking over the site, reading any new information that I might not have known.
I have been to many different Dr's over the years and have exhausted all of the normal headache medication, my list is over 25 pages long including things like Gabapetin, Reglin, Avig (That monthly at home shots, Topamax and pretty much every combination and type of regular medication which nothing helped and honestly had some pretty bad side effects for me. I was on Methadone 3-4 years ago and would never ever no matter how much it helped to live daily go back on it. I do understand about rebound headaches but when nothing has helped to just live it gets hard. I have spent the last 2 years starting over trying anything since being approved for disability. After reviewing all my medications and past information the Neurologist sent me back to a pain Dr. Thank you for the information but one of the other issues is what Dr's accept Medicare, before sending me back to a Pain Dr we tried to get me in with a leading headache Dr that moved here from Chicago but they didn't accept my insurance. As of now I have nothing to take daily as they just keep setting me up with procedures like Botox, Nerve Block and Ketamine Infusion. I honestly feel like I am at the end of the line as nothing helps and as my son has grown up I just feel like a horrible mom who is in bed for the majority of time. I just want to live again, not hurt and be a mom who can spend as much time with my son, I try it all for him but have honestly felt like I am just missing out on him everyday.
Thank you so much for sharing your story in such an open hearted way. I promise you that you are not alone. So many of us here have experienced what you describe. I also raised two sons and for a significant window of their upbringing, I struggled with guilt that I was raising them from my bedroom as I was incapable of being the active mom we all wished I could've been. It took years for me to release myself from that guilt and really realize that this condition is no fault of my own and that my sons got to be with me in a different and still just as special way. When I went on disability, I was able to be more present with them-- perhaps still not running around in the world, but quiet, engaging, together times- that were precious and unique. I've come to appreciate those times we shared and see them as valuable and myself as a good mom. I can tell from what you wrote that you are a great mom too- just the way that you've worked so hard to find a solution to this condition - you've not taken any of this lying down (except when migraine attacks have forced you to do so). You are a fighter- and even when granted disability- you've gone on to continue looking under every rock for answers.
And yes- the logistics related to migraine- on TOP of having migraine, are ridiculous and exhausting. Those of finding doctors, treatments, side effects, insurance coverage, funding it all... it's truly more than a full time job and it's centered around the last thing we want to think about everyday.
I am glad to hear that you are getting regular preventative/rescue treatments (botox, blocks, infusions). Even though you're not physically taking something daily, these treatments should have somewhat lasting effects. Of course what they "should" do doesn't really matter if you are having significant breakthrough pain.
The new class of CGRP drugs would be worth your researching. They have brought relief to a great many in different variations of significance. For some, it's been dramatic (decrease in attacks of more than 50%) for others it has not done a thing. There are many types of these treatments out there now (they can be taken orally or by injection -monthly, daily, or by infusion)- some are considered preventative, others rescue- some both! Here's some information on CGRPs: https://migraine.com/cgrp-new-direction-migraine-treatment
Getting linked up with a good migraine specialist with whom you can share a healthy partnership would be a great thing. And there are those out there who take Medicare (I'm seeing one of them!).
We are 1000% here for you and with you. You've found your tribe. Let us know how we can best support you and what questions you have. Please stay in touch- we're so glad you're here.
Warmly- Holly -migraine.com team.
You are clearly a loving parent -- I can hear the concern and care you have for your son. I obviously can't give you a magic answer, but I thought you might appreciate reading a couple of articles from our archives about parenting with migraine. It's not easy, but you're not alone and we get it here. https://migraine.com/posts/community-thoughts-explaining-to-children
https://migraine.com/posts/easing-the-family-burden
https://migraine.com/living-migraine/parenting-chronic-illness
I hope those are an encouragement for you! -Melissa, migraine.com team
I hear how it has been so difficult for you. It is extremely hard to live with migraines. With support from advocates and community members, I know you'll find some assistance and help for your migraine disease. Don't give up. Glad to see you are educating yourself through our site by reading about others' experiences with diagnosis, treatments, physicians, and therapies.
Consider seeing a head pain specialist as Nancy suggested, or get help for your mental health as Holly is eluding to below to reduce the guilt and depression associated with migraine disease.
There are many new effective medications such as CRGPs, devices, as well as therapies and home "remedies" that help sufferers get through their migraine episodes, such as massage, acupuncture, chiropractic, ice caps, eye covers, heating pads, etc. - too numerous to list.
Also, have you considered a dental school at highly-reduced cost as treatment of your dental hygiene? This may be a great option if there are any in your area. (I had all molars pulled at no cost years ago to help reduce migraines - which worked somewhat. I also have severe pain associated with my jaw/TMJ).
You are not alone in the feeling of depression and anxiety associated with this disease. I've just recently begun a depression med as my health declined. No shame in protecting our mental health - We are here to support you - Rebecca (comm advc)
