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34 years with chronic migraines

I’m new to I understand what you mean about tired of being tired . I’ve had chronic migraines since the age of 16 and I’m now 50 . My husband is wonderful at the time of the migraines but I truly don’t think he understands the absolute horrific amount of pain that I’m In! Sometimes they are gone in one day but sometimes they stay for 3/4 days at a time. I go to the er when I can’t take it anymore and I try my best not to cry because that causes more pounding pain! I’m on 3 different types of meds sometimes they work and other times especially if I wake up with one already there nothing will work! I used to also take excedrin migraine but I had started taking 5 to 6 (or more) a day everyday! My specialist doesn’t understand why they are still so frequent or why they still last for days. I don’t work anymore because I was calling in more than being at work. So I’ve applied for disability benefits. Sometimes I wish I could get a knife and cut out the part that hurts and sew my head backup! I lose track of days and become confused when family and friends tell me no today is…..

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  • Joleen1966
    2 years ago

    I’m a new member of and I’m so happy to have found you! It’s a relief to know there are others out there like me and I’m not alone. That feeling of being alone, no one truly understanding what I deal with has been tough to deal with for most of my life.

    Here’s my story: I started having headaches which I thought were sinus headaches because that’s what my Father would get occasionally when I was about 12. Sinutab, Sine-Aid and all others wouldn’t touch the pain. The nausea was just a lovely side effect. Of course looking at the age I was you would think these headaches were hormonal but they weren’t. No rhyme or reason when I’d get them. I went to a gynecolgoist when I was 13. I was put on birth control young because of the terrible cramps. I suffered with headaches all through high school. I did miss a lot of school because of them but still made it to graduation with good grades. I’d take Advil or Tylenol and go to bed. Spent a lot of time in bed! Worked and plodded along took lots of Tylenol Sinus which didn’t really do much. Finally started working in a Dr’s office. They noticed I’d have headaches a lot. My Manager suffered with migraines. She got me in touch with a wonderful neurologist. He tried me on all kinds of preventatives…does anyone remember Nardil, neurontin? Imitrex came out in that era and I was put on that to help with the migraines. Nope, that only sky rocketed my blood pressure and gave me palpitations – they had me taking 4 Imitrex at a time which besides not helping the head were extremely expensive! Moved from CT to Maine and was transferred to another neuro. He tried me on a bunch of preventives Depakote, Verapamil, Propanolol, Inderal, amitryptyline,atenolol, Topamax, metropolol, clonidine just to name a few. I was given Vicoden to relieve the migraine once it was in full force along with compazine for the nausea. Compazine was a miracle for nausea! I’d take 2 Vicoden every 4 hours as needed. That did help me sleep but I couldn’t work at that dosage. Finally I weaned it back to 1/2 pill every 3 hours which eases it for longer without the terrible pain coming back in between. I was sent to a wonderful headache specialist in Boston. He ruled out all kinds of things. I had lumbar punctures to test my spinal fluid to make sure it wasn’t pseudotumor. Of course the test was borderline so I had to do it again a year later. Not pseudotumor cerebri. I quit drinking caffeine, I quit smoking which didn’t help the migraine but I was healthier. I had a hysterctomy at 32 because of other issues but they hoped it would help migraines in case it was hormonal. It didn’t help. I wasn’t put on hormones for fear it would make my migraines worse. I had at least 4 CT scans to make sure I didn’t have lesions, tumors, swelling and 3 MRIs. I lost 200 pounds. Still daily migraine. I’ve kept all kinds of journals for drs and myself but they never showed any trigger or anything i could do to prevent my chronic migraine. They had me try Botox which didn’t do a thing. My wonderful Boston specialist told me not to worry about becoming an addict to Vicoden that I would be on it for the rest of my life just so I can survive and have some “quality of life.” I do. I work a full time job. I take Cymbalta, propanolol, Vit B12, Vit D, multivitamin with Calcium, Magnesium. 1/2 Vicoden every 2-3 hours to make it through most days.
    Thank you for letting me share my story. Chronic migraines SUCK! I do my best to be happy with what I am. Some days are hard and I do get weepy/crying. Most people think it’s “just” a headache. They are so wrong. I’m now 51 and have had a migraine for at least 35 years. This website shows we are NOT alone.

  • DonnaFA moderator
    2 years ago

    Hi Joleen1966, we’re glad you found us. Thanks for sharing your story! You’ve had an amazingly long and frustrating journey! I’m glad that you found a doctor that works with you and a treatment protocol that works for you. We look forward to hearing from you again! -Warmly, Donna ( team)

  • ezlivin1
    2 years ago

    Hello Patsy810,
    Sorry that your a member of the chronic migraine club and that you are feeling like no one actually understands what your going through and the degree a pain you suffer.
    I really have found that only other that must endure some type of chronic pain can really understand what we live with regularly. Even our loving spouses don’t really know, but they think they do because they also have to endure some of our stress.
    I am new to this blog because of the same reason. I am reaching out to others with the same chronic migraines because I cannot find anyone else that understands and I’ve tried for seventeen years. I was strong enough to endure and live much of this time within the confines of our home and bedroom as you probably have been doing. A quiet dark place of solitude gives modicum of relief so that one may actually fall asleep from time to time. Often sleep is the very best medicine. Yet being strong and keeping a positive attutude by realizing that it could actually be worse like not being able to even dress yourself or go to the bathroom yourself, etc like some people with chronic deseases can help. Every morning when I’m washing up I say to myself I’m grateful I have a home with electricity, running water, Tv and internet, plus air conditioning. Much of the third world population doesn’t even have running water in their homes. Just try to imagine having our illness and living under those conditions. Yikrs! That alone has helped me to keep up my moral for many years. Yes I’m weakening now but hopefully I’ll regain my mental strength soon as the summer rainy season is over and these low pressure months are over. And hopefully others on this website will help one another through our tough times. I’m certainly hoping for that. Well best of luck to you and stay strong as you can. I know it isn’t easy but you can do it!

  • AmalC
    2 years ago

    I can definitely empathize. I have had migraines since I was 12 but I am hitting the 17 year mark for chronic daily. Mostly, I do botox and my doctor has given me verapamil (sp?) to try and control the migraines. I have had to give up so many things. Movies, live theatre, concerts…. and the list goes on. I have very little support as my family simply doesn’t comprehend migraines at all. My sister tells me to just stop being so dramatic because “everyone gets headaches”.

    We don’t even know what my triggers are because anything really can set me off.

  • DrScott
    2 years ago

    I can surely empathize. I’m nearing 20 yers of chronic daily migraines. I’ve been through 6 neurologists, countless medications, botox injections, biofeedback and pain management programs, and soon will try a cranial nerve block. So far nothing has helped. I had to give up my career years ago because of the migraines, and being confined indoors in the dark so often without being able to enjoy my former hobbies is driving me crazy. Like you, I have a supportive spouse, but even though she’s had episodic migraines, she still doesn’t fully understand why sound and light are so horrible for me. People who’ve never had a migraine have absolutely no idea what it’s like.

  • asmith1987
    2 years ago

    Hello Patsy. I am new here, and use to suffer from migraines about 4 years ago and it was tolerable. This past Wednesday I had my first attack again and let me tell you, it has been hell ever since. It’s been 5 days now and I’m still struggling with severe pain on one side of head. My life has shut down, I cry all the time(even as I write this) because I keep thinking and fearing the worst. Your post gave me hope because it made me feel like I wasn’t alone. Then I started reading more testimonials and people who have suffered for so long. Because of your post and many others,I’m going to stay strong and keep going and conquer this damn thing.I want you to keep fighting as well. Please reach out to me anytime…day or night. That goes for anyone who reads this as well.

  • romans8910
    2 years ago

    It had migraines for 50+ years. I got my first migraine when I was 4 fast forward to 30 years ago and this is when the started every day. Pounding and pounding then I get what I call zingers. If you have had an ice cream headache that is what mine feel like. The zingers can last all day and zapped me for 15 minutes to 1 or 2 hours. I saw every type of doctor and he most they did was give me Lortab, 30 per month. I’ve tried about every migraine med’s and treatments and nothing really worked or if it did it did not work for very long. About 15 years ago I was referred to a pain clinic thank God. When I get my migraines I also needed to visit the office or hospital at least 2 times a week. My doctor and I worked together to find a combination if med’s that would get me out of the dark room. I also had to quit work after 25 years applied for social security and was disabled for the migraines. The We came up with a long acting med and a short acting med’s and it worked and I had a quality of life. 4 months ago my pain doctor lost her license cuz she was helping her patients so the DDAdid this. I didn’t know this happened and the new doc refused to fill my med’s. Thanks to trump and the DDA so called “Opiate addiction crisis” chronic pain patients were lumped in with the heroine and other addicts and People who sell their scripts and abuse their drugs. A true pain patient would never consider being involved with this. They would need to take my med’s out of my cold dead hands. I’ve gone to 4 different pain clinics and they are all the same, refused to help me. There are hundreds of thousands of usout their now what are we supposed to do? I am back in my dark room. My brain is fried and like many of you I can’t think. Has anyone else had this happened to the,?

  • faithp
    2 years ago

    I am sorry to hear about your pain and I have been on a similar route for the last 10 years, I am 60. I hope you have tried Botox. It changed my life for the last 3 years. It was the most amazing feeling, like a switch flipped after the first treatment. My head felt completely clear. I had been having almost daily headaches prior The that point. Unfortunately, in the last 2 months my headaches have returned – don’t know why. My neurologist did an SPG nerve block in my nose, no help. Prior to that he did Supra and suborbital, temporal and occipital nerve blocks which relieved pain for 10 days only. Now he has me on a short course of dexamethasone (steroid). Head feels better but I know the steroid course is only temporary relief.

  • mike1875
    2 years ago

    I can understand each of the contributors cmments as I have been there at one time or another. I had my first migraine at age three and it is my first memory. I am now 60. I had a bad head on collision at 18 which caused the herniation of 4 discs on the left side of my neck. The daily migraines started by age 22. I went to a GP who back then suggested Tylenol #1’s which are OTC in Canada. I was taking 35 a day. My liver was not happy. By age 35 Immitrex was released, the first Triptan. By age 45 someone finally suggested an MRI for my neck which showed the herniated discs. I did not know I had them until then.
    I was then referred to a great Pain Specialist who treated me with twice weekly nerve blocks on both sides of my neck. No other doctor had done both sides or as frequently. His theory was that he neede to break the pain cycle that my nerves were stuck in. After two years of those I was down to once a week. After another two years I was down to once every two weeks.
    He also introduced Botox which helps for three months at a crack. He also introduced some other prophilactic meds like Topiramate which decreased the severity of the Migraines dramatically.
    Probably the single greatest help came from a surgical procedure called a Rhysotomy. I have had 11 of them so far. THe doctor takes an topical freezing to my neck on the left side. He then inserts an electrical device while watching under a Flouoscope to aim properly. When he believes he is on the nerve he wants to burn he passes a small electrial current into the nerve so I can tell him if he is on the nerve or not. It is not hard to tell. On the same instrument is a sound wave device which is then used to slowly burn the nerve and separate it from the spinal column. I have four nerves done each time. Because there is only local freezing I can drive myself home. This works for me because my migraines are made worse by my neck however I am sure that there are probably others out hter whose necks are causing them troubles as well.
    Throughout this life I have been married, raised three kids, run my own company and just tried like hell to not stop living because I was in pain.
    For me the worst is that the migraine makes me stupid. I can’t do simple math when I have one. I walk into door frames. Our family joke is that Dad is a spaz. I walk into door frames. I can’t hit the opening.
    As part of the invisibly disabled community I think sharing like this is a very good idea. I live in a very large city in which there are many Pain clinics. When I am sitting in the wating room I am always amazed by how far people travel to see my Doctor. We need to share our knowledge as best we can. We are individual cases and Migraine does not present the same in each of us, however I would far prefer to hear of each your experiences than to hear about some new purple heart flower that my neighbor thought might help me.
    Patsy810 as far as medication overuse is concerned, if you are still using anything like Excedrin it is those over the counter drugs that are the worst. You need Opioids for that amount of pain. If your Doctor is not a Pain specialist I would highly suggest you try t find a Doctor who does. They have more knowledge about the latest drugs and techniques to help you with the amount of pain you are having. Best of luck.

  • Tamara
    2 years ago

    Search for articles about medication overuse headache (top right corner) … sorry don’t know how to link in the comments. If you are taking medication that frequently it actually will increase the pain and make it very difficult to treat. The max is 15 days for anti-inflammatories or 10 days for triptans.

    Have you tried triptans? There are 7 and each you will respond differently too – I had to try three before I found one that worked – and then I found different delivery methods (I have nasal sprays and pills at home and get an injection at my docs if they aren’t helping)

    If you are unaware of these two things – I think it would be time to switch specialists since they obviously are not familiar with migraines. Hope that helps!

  • Patsy810 author
    2 years ago

    Yea I take Sumatriptan, Nortriptyline, and Ketoprofen and I tried the nasel spray too. I’d like to get a cat scan just to make sure that I don’t have any tumors.

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