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Living with Migraine

Do You Ever Feel Like Giving Up?

  • By pooh2you

    I am 44 (45 in Nov) and have lived with migraines since I was about 11. At first they were just menstrual migraines, but around age 30 they started increasing in frequency. I was diagnosed with chronic migraines in 2007 and put on Topamax and Verapamil. it made things so much better – only approx 6-8 migraines per month! (sad that one would think of that as good LOL) fast forward to Feb 2012, I get a lovely kidney stone. I switched to a new neuro on the advice of a fellow migraineur this past April. The first thing she did was take me off of Topamax because they can cause kidney stones! I truly love her as my neuro, but now I am still in the process of finding the correct dose of Lamictal – currently up to 200mg twice a day along with my verapamil. I also use Relpax 40 mg (but can only get 6 per month due to insurance), Midrin and Fioricet. I was using Norco but I can’t sleep on it and it was making me itchy. Off of the Topamax and until I got up to 200mg of Lamictol I was having daily migraines, now I have about 2-3 per week – unless a storm front/heat/or humidity comes along.

    So I wake up this morning with a nice migraine and as I lay in bed I couldn’t help but think “I wish I could just take my meds and lay here in my nice dark room and never go to work again.” Of course being a single mom, I have to work. In fact my finances are a mess because I have had to take off quite a few times and have not always been paid for them. I worked for my company as a temp beginning June 2012 and was just hired as permanent in April 2013, so I don’t have much sick time or vacation days yet. (none thru the temp agency) To top it off, I know my boss doesn’t like me missing work like I do. So that makes me go to work when I prob shouldn’t.

    Sometimes I dream about giving it all up, taking my daughter and running away! There are very few people in my life that understand what I go through, my mom is def not one of them. Luckily my daughter is, she also gets migraines. I wish I could go somewhere where work is not a worry and I can enjoy my good days and not have to worry about missing things on bad days.

    Is there anyone else that feels like this?

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  • By Nancy Harris Bonk Moderator

    Hi pooh2you,

    Absolutely! Wouldn’t it be nice to find a spot where there is no migraine or pain. I think it’s pretty normal to think things like this. Who wouldn’t want to live pain free in stress-free environment? You’ve come to the right place, I bet there are lots more of us who think like this too…..

    I’m sorry you are having a rough time now. I wonder if you’ve ever seen a “true” migraine specialist rather than a neurologist? The thing is a migraine specialist is THE expert and board certified in headache medicine by the United Council of Neurological Subspecialties or UCNS. These doctors treat patients with migraine and headache disorders all day, every day, unlike neurologists who treat people with many different conditions such as MS, stroke, Parkinson’s and epilepsy. We have information on how these doctors are different in this link; https://migraine.com/blog/how-are-migraine-specialists-different/ and if you want to look for one you can find that information here; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    I hope this helps and if I find that place without pain, you’ll be one of the first to know 🙂

    Nancy

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  • By Ellen Schnakenberg

    pooh2you – Oh yes hon, and this month has been a doozey for wanting to just escape from everything… for me. And I spent a good portion of it on vacation! LOL.

    All I want in my life right now is peace and pain relief. Neither is likely to happen right away, so I keep plugging on. I think this is one of the nice things about meditation – I can use it to imagine myself in peaceful surroundings and loving times with my family. Have you ever tried that yet? Here Diana talks about her experience with these feelings: https://migraine.com/blog/meeting-myself-where-i-am-migraines-mindfulness/

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  • By Newdancerco

    Heavens yes! There are days I just want to sleep until someone finds a cure, and there are days I wish someone would just cut the damned thing off. There are days it hurts so badly it is all I can do to keep breathing, when the noise of the air moving into and out of my lungs hurts, and I don’t much care if I keep going. Going to work is excruciating, but my bosses don’t get what it is I’m dealing with, and my position is such thatvi NEED to be there. Facing work when breathing hurts, moving hurts, and I can’t think, I want to give up, just quit everything.
    But I have a kid that needs me.

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  • By Evelyn C

    Yes, I do. Almost every morning I have to find a reason to get out of bed and I am lucky to have supportive hubby and sons. They are usually my reason to get moving.

    I live in a small mountain town with few migraine specialists and am so very happy that I’ve found this website. I started thinking I was crazy because of the thoughts I have but now realize others feel and think the same. Thank you!

    Just returned from visiting family and, of course, wasted time dealing with a migraine, fortunately only lasted 2 days. Was very grateful for that. The things that make me grateful now are so simple – a short migraine and a good night’s sleep. Not what I envisioned when younger but that’s ok.

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  • By kadease24

    Absolutely if you have chronic migraines or daily headaches every day is an struggle to get out of bed, and motivate yourself to do what you need to do. I’m currently in inpatient care here in Michigan at the Michigan Head Pain and Neurological institute I’ve had chronic migraines for 6 years and never ending migraines varying from a 7-10 for the past 3 and a half years. While I’ve been here I have had multiple visits from their psychologist and she has shown me that you can either be passive with your pain management where you just take the meds and wait for them to do their job which won’t always be the case, or you can be proactive where you take the meds and regardless of the outcome you still keep the attitude of this is what I need to get get done today, and laying in bed will feel nice, but I will still be in pain, but now I will be frustrated with myself because I just wasted another day. My advice to you is that look at each day as another fight or competition. I’m a very very competitive person I decided to treat my migraines like a battle if I stay in bed all day just relying on the morphine to take away the pain then the migraine wins. If I get out of bed, and accomplish something such as walking the dogs, going to work, reading a book, or other distractions that might hurt a little bit more, but at least I will feel like my day was controlled by me and not my condition. Even if it is just getting out of bed for a couple hours that is a couple of hours where you say I controlled what I was doing not you migraine you can tag along since I know you will, but you will not control me right now.

    Here is what I wrote to my friends and family after I informed them that I will be getting discharged either today or tomorrow. I have posted this in multiple threads on here, but I think it gives off exactly what I’m trying to say. Pain scale is out of 5 not 10

    I mean this is a chronic condition there is no cure, so if they can take me down to where the pain is what I consider mild instead of debilitating, and if they can get me nerve blocks plus a possibility of being able to control the nerves with a TENS unit that would be a huge step in the right direction. I would be able to get off the morphine and start job searching again without the fear of my meds messing me over once they see my drug test prescription or not. I would love love love them forever if I got down to a 2 while I was here even for just an hour I don’t even know if I’ve had one of those in my 20’s yet.Overall it looks like a bit of failed treatment on paper especially with how much money and stress and pain I had to go through to finally make this all happen. To me though I’m happy with this outcome through all the tests and blocks they seem to finally have a small grasp on what may be one of the main offenders on why I get so many migraines and why they are so severe. However with migraines there are so many variables that come into play which is why no two migraine sufferers have the same type of migraine or triggers.
    Overall I am very happy that I chose to do this, and if they can keep expanding on that C2 nerve and working to control it maybe just maybe I will get that pain free day. 9 years I have had migraines with no neurologist able to tell me why I have so many, and now it is possible they have finally found one of the many keys that could open a possible box of me getting my life back.

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  • By Ellen Schnakenberg

    kadease24

    Aren’t psychologists great to have in our toolboxes for help? No, we’re not crazy. We’re chronically ill and a little help in figuring new ways for us to deal with our disease is a great thing!

    You are a fighter and that will likely take you a long way. I love that about you! Not everyone will do well with the fighter analogy though. We’re all different. It’s okay to lose a battle or two. Sometimes, losing a battle is the way we fight and win the next one!

    I had to go onto opiates, something I have avoided for a very, very long time. I’ve even undergone extremely painful surgery without benefit of pain relief because I wanted to avoid MOH. I too am a fighter.

    After about 20 years of fighting, it can be exhausting. That’s okay too. That’s normal. I had to go onto opiates so I can fix other parts of my body that may be exacerbating my Migraines. This was so demoralizing for me. I still feel like I failed. But I’m making baby steps toward making the rest of me better, and this is important too. This too is part of my battle.

    My Migraine specialist is an angel from heaven. She saw me so upset and grabbed my shoulders and looked me square in the face to tell me “This is temporary. This is not permanent. This is only temporary. You’re going to be able to do this…”

    I used to take things week by week. Then day by day. Lately things have been especially rough, and I take them hour by hour, or even minute by minute. The thing is, so long as I made it through the last minute, I know, hard as it might be, I can make it through the next.

    Personally I may not always have the strength to put up my dukes to fight, but so long as I keep getting up every time I fall down… it’s gonna be pretty hard to beat me 😉

    Hang in there. I love your optimism and I know you are inspiring others with it too!

    ~Ellen

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  • By Angie

    I have chronic migraines since i was about 12. I am 37 now. On the very few days that I wouldnt have a migraine I would have some sort of headache (which i felt was great because it was better than a migraine). The last 2 yrs my migraines have gotten a lot worse. Light and noise sensitivity way more intense. Nausea constant and then the dizziness started. I have missed so much work since the dizziness that this past summer work asked me to file for intermitten FMLA. Had to use that alot then i got a bad bad migraine on Dec 6th that have has 6 or 7 round of shots tons of new meds and cant drive or sit up very long. New set of doctors but I dont think they get how my life is in shambles right now because of these stupid migraines. I pretty much feel like i am losing my job and my family is helping with my 2 boys because i am a single mom. I feel so guilty that everytime i think about how my boys are having to deal with this with me i just cry. but we all know crying only makes the pain that much worse. I feel absolutely useless but I try to think one day maybe it will be better. I need it to get better for my boys. I keep trying to remember God is bigger than a migraine.

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  • By Jade84

    I have today completely lost another day! I have felt heavy headed for the last week and every day is rolling into one big blur. Today I woke up at 9am, had a shower which drained me of all energy and I’ve spent the rest of the day in and out if sleep. It’s now 7:30pm. You do ask yourself what the point is sometimes. Not every day is as bad but at tge moment most days are pretty similar. It’s completely disabling and so frustrating!

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  • By Nancy Harris Bonk Moderator

    Hi Jade84,

    I wanted you to know you’re not alone in feeling this way. I’m having one of these days today too! I woke up with a migraine and felt achy all day, making me feel completely useless. My migraine dissipated, but my head pain has been elevated all day.

    It seems when we have good days they are GREAT! But bad days drain us, leaving us feeling useless.

    Here’s hoping tomorrow will be better!

    Nancy

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  • By Jade84

    Thanks Nancy

    I rarely let it get me down. It’s taking it’s toll at the momement as the relief days are fewer. Not even tried to get up today yet….challenge number one lol.
    Hope you are feeling better x

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    • By Nancy Harris Bonk Moderator

      Hi Jade84,

      Being so tough all the time is difficult and taxing. Some days I think it’s ok to just give in to it and have a down day or two.

      And yes, today was better thank you, but I overdid, so I’m sure tomorrow I will pay for it!

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  • By Vickie Smith

    I’m new to your site, but I am so glad I’m not alone. I am now 60 yrs. old & the older I get, the worse my migraines get. I was diagnosed w/Chronic Daily Migraines years ago. I’ve absolutely tried everything that’s offered, even Botox. The first Botox injections worked actually well, I didn’t have a true migraine, only headaches, for 2 wks. That was the best 2 wks. in years. I had to retire 7 yrs. ago due to me missing so much work & I was afraid I’d lose my job if I didn’t take the buy-out the State of TN offered. Now since my husband has Leukemia, the stress is eating me alive, so my migraines are so much worse. I’ve had 3 Botox treatments & only the 1 worked. I’m gonna try 1 more next month (June) & if it doesn’t work I’m gonna stop. We live in a very rural area, so we have to travel 2 1/2 hrs. to my Neurologist. My husband will have to go thru more chemo very soon & there are times I can’t drive because I get dizzy a lot. Sometimes I just want to give up. My husband understands. I had Chiari 1 Malformation Depression (which my daughter also has, along w/migraines) surgery some yrs. ago, which my Neurosurgeon said would help, but it didn’t. So now I have some bad discs & have had TMJ for yrs. I’d try the new surgery just for migraines if my insurance would pay for it. We just can’t afford anymore medical bills. I’ve seen so many doctors it’s not even funny. When I do have a decent day, I over do it & pay for it the next day, but I have to take advantage of any half way good day. I keep telling my husband just to get his gun & shoot me. My migraines are “daily”. Some days I just take my pain meds, put a cold pack on my head, along w/some ActivOn gel, which burns my head & peels it, pull the covers over my head w/hardly no sound around me. I lose my peripheral vision & have auras at times. I’ve fault w/these for so long, I have white matter on my brain. I do understand everyone whose has this disease, it’s not fun. Please forgive the long post, sometimes I just have to let it all out & wanted to let y’all know I do understand. I’ve applied for disability, but haven’t heard from them yet. I wish everyone to have a “good” day.

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  • By TracyM09

    My family and I call me a Train Wreck! I’ve had the Migraines since I was 8, they went up and down until Feb 2000, then they became Chronic Severe Migraines with a dash of Vertigo! I’ve been in the hospital to flush meds, had 3 Botox sessions that didn’t work at all, been addicted to Methadone,and now I’m just taking some basic preventatives and use Imitrex and Oxycodone for breakthroughs. In addition, when I just can’t do anymore I go to my Doctor and get Morphine and Phenergen injections,that usually give me relief. Since 2000 I’ve also been battling a knee injury and 9 surgeries, finally got a replacement this March, and I went through Breast Cancer in 2012. The Migraines carried on through Chemo and Radiation, and they’re having a great time with the side effects of Tamoxifen, frequent huge Heat waves that I call Hot Tsunamis!! My Migraines are, of course, sensitive to my body temperature so I requested I be put on Venlafaxine to bring down the Tsunamis, thank goodness it worked!! I Love reading your conversations and the special names for Migraine Types was priceless! The Bulldozer and Ninja are quite familiar. I’m looking forward the completing my surgery rehab, we’re hoping one less thing to carry will perhaps calm the Migraines down. I’m fortunate that my Ortho Surgeons considered this along with the degree off injury in my knee, as I’m only 55….60 is the magic # for knee replacements!!! You all Be Well. TracyM09

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  • By TracyM09

    On, I’m not a quitter! The Orthopod and I discussed my ability to rehab my new knee, I assured him that I don’t quit! I’ve waited for this surgery since 1988, quitting isn’t an option. I am on Social Security, I was a Federal Worker, such a Lovely group of Caring Individuals. I had to pull all my writing skills together to describe how my life was seriously derailed by just the Chronic Migraines, apparently it worked, they approved on the first attempt. Anyway, I will continue to carry on, I might try Cefaly, what have I got to lose?!! Be Well. TracyM09

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