January 19, 2017
I've spent the past 11 years with almost daily migraines and most medications (Abortives, preventatives and what I consider "interruptives" for when a headache is just starting to get bad) only take the edge off... I've been to 8 different neurologist, 2 of which claim that migraines are their specialty and tried pretty much every medication on the market including some that have zero relation to migraines. Every time I've gone into my neurologists in the last 3 years (including a BRAND NEW neurologist) telling them what we've been doing isn't working: Botox, nerve blocks, medications, etc.. and that I will literally try ANYTHING to stop the pain; their response is that we'll just keep trying it for the next 3, 6 or 9 months and that's when i'm supposed to reschedule for my next follow up. I know i'm ranting but I want to understand why this is an acceptable "treatment plan" when it's already not working??? do other people get this so called "care" from their specialists?
January 20, 2017
Msmmain.....Yes..And I thought that I was the only one. I've had migraines for 17 years and everyday of my life for the past 10 years. And when I say everyday, I mean everyday no days without having break at all. It is not acceptable treatment. But what choices do we really have. None! Exactly! Unless you have great insurance. All neurologists say they specialize in migraines. But truth be told they don't. There are some special migraine clinics. I have never been to any. Merely because they don't accept my insurance and they are too far away. But I have began to realize that no type of doctor can even began to understand what it is that I go through because they have never experienced the pain and suffering that I have and am going through. Just becaise they have a degree in studying the brain doesn't mean that they know the pain and suffering that I endure.
March 3, 2017
YES!!!! But after 20 some odd years of dealing with debilitating migraines, I learned a secret..... neurologists aren't always the answer. While migraines are a neurological disorder, they are also treating so many other disorders, that migraines are low man on the totem pole. You have to find a headache/migraine specialist. I found mine at an ENT office. I just googled it. Turns out he is a top doc in my state and I actually had his last appointment today at 1:30 and I didn't leave his office until 4:10, because he wouldn't let me leave without relief. I didn't have to travel to a headache clinic out of state and spend tons of money, he takes my insurance(Medicaid) and is 10 minutes from my house. They're out there and that's ALL they do.... migraines. Let me know if you have any luck.
March 15, 2017
Dear MSmain, Jenni & Danadibs1979,
Thank you for this discussion!
MSmain & Jenni, just by sharing your thoughts, feelings and experiences with this epidemic pattern within the medical treatment system, you have ministered to my heart & mind. You've helped me feel a little less crazy or delusional! I feel exactly the way you said it. How is it ok that we are treated so poorly? The public is always being told to be our own best advocate - from all of the big names from daytime TV: The Doctors, Dr. Oz, Dr. Phil....the list goes on. However, whenever I try to do so I get a very negative response. When did it become acceptable for anyone in the medical field to immediately reject their patient's personal experiences? When did it become acceptable for providers to treat us like we're completely ignorant and chronic liars?
I have been having a fit about this epidemic for 40 years. I have had Migraines my entire life - literally since infancy.
I have lived in 5 states in the last 32 years and have yet to find any kind of physician, headache specialist, or medical specialist of any field who had any kind of a clue about Migraine treatment or cared enough that they'd stick in there until we found something that was at least helpful.
Because of so many bad experiences, I think I now have new doc PTSD! In 2008 I had the big boss of all Migraines & was hospitalized for 3 days during which I was diagnosed with Chronic Daily Migraine not from medication over use. It was not due to medication overuse because I didn't have any medication to take and hadn't for months.
I have had a constant migraine every single moment since and everything that's been tried has failed to abort it. My pain # has not been below 7 during the entire 8 years and for the last 2 or 3 months it's been in the 9s more than 7s. I am in tremendous pain 24/7 & have been for 8 long years.
I have been experimented on by 2 inpatient neurology/headache specialist teams and followed-up in outpatient clinics that could not see me in a timely manner because they were overrun with too many patients and too few physicians.
One of these times was a well known 'ground breaking' inpatient treatment program. The physician who did my in-take evaluation told me that 25% of all Migraineurs that have had Migraines since infancy or very early childhood, have Migraine Disease that is aggressively progressive, there is very little known about it, there is no cure and there aren't any consistently affective treatments for it. The treatment Director agreed with her but they still tried several different things over the next 17 days and nothing helped. I was discharged without help or hope. There were 23 of us in that group and 3 of us came in with the nearly identical stories, 1 was in her late 50s, I was in my 40s and the third one was 16. Very interesting that all of the others found something that helped but we did not.
I have been evaluated by 7 individual headache specialists and/or neurologists in their outpatient clinic. Again, all negative outcomes.
One told me that there was nothing left to try, to get a good psychiatrist and get over it-literally that was his words to me and that visit cost $573.00 for 20 minutes of belittling. I was in total shock at his cruelty and callus treatment of me. I walked out of there feeling numb and ill, went to my car and cried. I cried all the way home and had moments of crying spells for the rest of the afternoon.
Another one would prescribe a medication and have me come back in 3-5 days and if the med hadn't helped he'd stop it and prescribe another one. He was throwing so many new drugs at me so fast that I couldn't keep up with him.
Another, well respected provider in a large well respected facility didn't examine me or review the 12 page questionnaire they required me to fill out. First a medical Resident came in and asked me a few basic questions and then left. Then, this man walked into the room, did NOT introduce himself or acknowledge my presence, he immediately began to berate the Resident's actions and lack of medical protocol and information gathering, which he continued to do for 15 minutes, seemingly quite angry. Then he turned his angry look toward me and angrily asked why I was there. I began to answer him and he abruptly stopped me. He then asked if I have ever taken any pain medication and how did I get it. I said yes, that my current PCP prescribed it. He then literally yelled at me saying "If you would just stop taking those damn pills you'd feel better!" Ok wait a minute, I'm in a lot of pain, I'd waited almost 2 years for this appointment, I had built up really high hopes because everyone said this clinic was amazing and this guy has me in absolute offensive, fight or flight mode and I'm about to panic and explode! What the heck is he thinking? I asked him why he was talking this way to me and he again literally yelled "If you'd stop asking for the pills all the time and stop taking the damn pills, you'd feel better!" Then he left the room and the Resident and I just looked at each other, he said he was sorry and I left the room, the clinic and the facility-never, ever to return! I went to my car & felt like I was going to pass out and then I vomited and cried the 1.5 hour drive home.
Through all of these experiences I thought I was the only one going thru this, that I was the problem, that I was the failure, that I was causing them to treat me this poorly, that my literal existence was just a foul odor to be brushed away. I have worked in the medical field and seen, first hand, how the docs and staff have become so jaded that they find it easy to treat me like a lying, faking, sub-human bacteria who only wants drugs. These providers are horrible and I think they should be red-flagged with our insurance providers when they are cruel, mean, offensive or dismissive to patients like us. I've reached the ugly point of wishing they had to walk in our shoes for 1 month and then, as they sit in front of all the Migraineurs that they've hurt, they could see & feel the gut wrenching, heart breaking, spirit crushing, hope killing, demoralizing, disgust, utter disbelief and condescending dismissiveness that they've so generously handed out; time after time, beating down and kicking around another patient in horrific pain with wrecked lives, frazzled nerves, and loss upon loss because of this demon called Migraine. When they are at their most fragile moment; that moment when they took yet 1 more chance to filet their very being right in front of this 'specialist' to clearly communicate all that they've gone thru and are currently going through, to lay there so exposed and cold and fragile, praying that this is the ONE; the one they'll be safe with, who won't abandon them, the one who'll go the distance with them through trial after trial of treatment options. Or at least one who will reject them without stomping them into a mere smudge of quivering nerves on the floor. Oh, and by the way, that'll be $600.00, please; our standard charge for the initial evaluation.
Of course there's the group, on the other hand who appear to believe me, show kindness and compassion and support and even turn the lights down in the exam room because they understand the photophobia issue; so sweet. So they try their first treatment plan for, as you said, either 3,6, or 9 months and send me out of the office armed with a new prescription to be filled and started immediately but don't expect to see any results for at least 2 weeks. Oh, that's right this is a long term preventative and if it works you shouldn't need anything for break through events, plus this office doesn't believe in using any addictive pain medications because there are so many issues with them and insurances don't like to pay for them and if the pain med works then we won't be able to tell if the relief is from it or the new preventative. So, I'm here for seriously debilitating pain that has robbed me of all joy, peace, happiness, productivity, etc but I'm to just ignore it while I wait for this new preventative to kick-in. How do I keep from going insane until then, especially if it takes 3 to 9 months to work? So, I go home and grin & bare it for a month. Another 30 days of horrible, crazy, life limiting, debilitating, energy sucking, joy killing pain & symptoms. I wonder if that doc or nurse or tech is even wondering how I'm doing or if the new medication is helping yet? So, it's only been 30 days but the med is not helping yet but I am in so much pain I'm asking if there is anything that can be done to help me get to their smallest goal of 3 months. So, they give me a very limited 20 day supply of a pain killer and I know this one makes me very sick to my stomach so I also ask for something to help with that and receive a very limited 20 day supply of Promethazine; of course, against the docs better judgement. Well, when those 20 pills are gone, I call for a refill but must be seen in clinic. So, it's only been 1 month & I'm back in clinic due to constant, extreme pain and the doc decides not to wait 3 months for any results on this med and stops it. Now, we're in the 'lather-rinse-repeat' stage with another new preventative along with 20 days of pain med & anti-nausea med. When I'm talking to the doc, I express concern and feeling of hopelessness due to all of my experience with failed meds and his response is "don't worry, we're gonna figure this out together, there are lots of options available and we'll find the right one together". Short version, this doc tries 2 or 3 different drugs and then says he doesn't know what else to try or do because my body just isn't responding to the meds and maybe I should see such-n-such specialist. I leave completely disappointed and demoralized.
What happened to "don't worry, we're gonna figure this out together, there are lots of options available and we'll find the right one together"? I don't understand it at all! I didn't mean to make it too hard to find a treatment. I didn't mean to cause them to give up on me. I didn't mean to cause the meds to not help & I have no idea what I did to cause this. When I voice this to them they say there isn't anything else to try.
You know what? I don't even care about finding a preventative med anymore. I no longer believe there is one and won't be one in my life time. I'm sick of these rude, cruel, ignorant so called doctors and/or specialists who appear to be in it just for the money. They don't care about people in pain at all. Even the ones who say they care...I've come to the point of believing that they're nice to say that but we're just all cattle...move 'em in, move 'em out, go home & forget about them. That's why they're surprised when we call and say we need SOMETHING FOR THE FREAKING PAIN!!!! Yes, I've done bio-feedback, yes, I've had my green tea, yes, I'm drinking 3 liters of water every day and yes, I know what my triggers are, but that no longer matters to me because I'm in a constant migraine, like the trigger, pro-dome and post-dome overlap each other creating a constant wheel of migraine., on and on it goes! 8 years, EIGHT, E-I-G-H-T YEARS of constant Migraine wheel of pain, floaters, nausea, vomiting, dizziness, confusion, all of the sensitivities, trigeminal neuralgia of the face, memory loss, diarrhea, constipation, loss of vision, ringing in the ears, muscle cramps, etc with no end just around and around and around without stop!
And then there are the bad apples who sell their prescription pain meds on the street or are abusing their meds so everyone who needs these meds are punished by rule after rule and law upon law that docs don't know the honest patient from the dishonest so the honest ones have EVEN MORE STRESS trying to get just a moment of relief. I can't even recall what it's like to be without this pain, I no longer remember what it feels like to be free of all of this mess. I now know there are people who've out there like me and there are people who've had this issue for more years than I. I am so sorry for you, I know your plight and you are in my prayers; although I often tell God that I don't agree with His decision to leave me like this and I'm tired of it.
When did any of this become acceptable? I don't know but I can tell you that I am so beaten down, so tired, so void of ideas, tools, joy, hope & faith that my giving up became acceptable to me when I could no longer function and all of my illnesses have connected in a circle that I can not break. I'm stuck in the middle, screwed and never going to change it. I'm left like this, just mucking through waiting to die and that's the best of it.
March 15, 2017
Thank you all for your responses. You have no idea how much it means to me to hear from others like me who understand the horror that this disease has turned my life into. ShannonAW your post today literally had me in tears. God it's like you were writing about my own appointments and pain. 😢 I need to ask though - at the end of your post you are sounding very hopeless and I want to make sure you're not thinking about ending things & hurting yourself. 2.5 tears ago I reached that point & swallowed about 30 painkillers. I regretted it immediately and called 911 & I don't want anyone to go through that experience. There are SO MANY things in this life to live for, even our pain-filled lives. The simplest things make life worth fighting for: the sound of children's laughter, the smell of fresh cut grass, thunderstorms and sunrises/sunsets. If you are feeling that hopeless, PLEASE reach out to someone to talk to about how you're feeling emotionally. I have battled major depression because of my migraines and I know that things may seem hopeless, but tomorrow's a new day and how heavy your heart may be feeling will pass and it's not permanent.
I hope that I'm jumping to conclusions and that things aren't that dire for you, but I couldn't stand it if you needed help & I said nothing. My prayers are with you and yours.