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Diagnosis of Migraine & Headache Types

New Feel like I'm the only one with long lasting migraines

  • By Luvmyfam22

    Since my son gave me the link to this site, I have become bolder and bolder in reaching out. today I am posting a question as often I feel so alone as a migraine suffer because it is not every day you meet someone and you say “Oh I suffer from debilitating migraines.” and their reply is, “No, way me too! We should support one another!!” Usually I get, “I found this site, this pill, this article/book, deficiency in you, etc. that will help you migraines to go away because it helped so and so.” I feel so emotionally tired, on top of the tiredness from the pain. Well, on to the question. I have suffered with migraines for 25+ years now. My husband and I thought I should take early retirement from my teaching career, thinking that would help loads. On the contrary. Over the past 5 years my migraines have increase exponentially, to the point that I can have a migraine that will string along from 3 months varying only in pain intensity. When I tell people this, even my husband sometimes they look at me like I’ve lost my mind. Well, now I’m beginning to think I have. I feel like I have lost my life and a LOT of relationships; and most of my my time is spent alone in a dark room. I just feel as if I disappoint so many! Is there anyone out there that has migraines that last so long…since September I feel like I’ve been one long migraine and if I step out of line I infuriate it! I’ll leave the insurance change of meds out of the question and how that has impacted the issue. Sorry it’s such a long question and thanks for reading!

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  • By GardensatNight

    Hey girl! So sorry you are in this club none of us wanted to join. You and I are similar in a lot of ways. I was a teacher too for many years, finally had to stop when the migraines became daily. Am now housebound, except to go to doctor because the light sensitivity is so severe. I don’t really blame the stopping teaching for mine getting worse. My husband tells me I should have stopped long before I did. I just desperately didn’t want to leave my kids. I think my body was going to get sicker no matter what I did. I’ve lost most of my former friends. I think a lot of people don’t know what to do when someone is really really sick. I think it’s scary to them, and a lot of them just leave.

    I also have TERRIBLE intractable migraines, which it sounds like you do, too. What sorts of things have you tried? (Sorry if it sounds like I’m that dork recommending a pill, that your read this article, rub this snake oil on your forehead). For me, triptans stopped working and painkillers just cause killer rebound. Do you ever do infusions? Those are the only thing that break up my migraines. On a good cycle, the attacks go on for 5-7 days. During my bad periods, they’ll last months. I sometimes need several IV infusions a week, but they eventually usually break up the attacks and settle my head down. If you’ve already tried that and they don’t work for you, then sorry to make another useless suggestion, and I hope you can find some friends/comfort here.

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    • By ksgreen

      Hi! I can completely relate to your post. I have been dealing with the same migraine every day for about 8 months. The auras and pain levels may vary from day to day — sometimes from one hour to the next — but it never actually goes away. It is so incredibly exhausting trying to put on a smile and “act normal” for the sake of my relationship, family and job.
      My boyfriend of almost a year is 99% of the time patient and understanding, but there are times when it feels like he’s losing patience with me. Maybe I’m imagining it, but…
      Anyway, wanted to let you know you are not alone!

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    • By Nancy Harris Bonk Moderator

      Hi ksgreen,

      Thank you for posting! It IS good to know we’re not alone in our migraine disease journey. Having a good support system is so very important!

      Looking forward to hearing more from you!

      Nancy

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    • By Luvmyfam22

      So I was looking for how to ask a question and found “you have replies to comments”. Hmmm…so I am reading them and seeing, even more so, how much this site has to offer. I do appreciate your suggestions and somehow it is much easier to hear from another migraine sufferer. I sometimes feel when some others suggest things to me, it is more that they think it is the ‘one’ thing I haven’t tried and they think I need to get on it because wala…my migraines will be gone. I know it is in all sincerity and concern, but the ‘pressure’ I feel when I am letting them down when it doesn’t work for me. Thanks for your comments and suggestions!

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    • By Nancy Harris Bonk Moderator

      Hi luvmyfam,

      Thank you for your kind words!! We do have a lot to offer here at Migraine.com!!!

      On one hand it’s great that we have people in our lives who are concerned about our health and want to share migraine treatment ideas with us. On the other hand, it can be frustrating because we’ve tried most of them!

      I take a deep breath and say thank you!!

      Nancy

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  • By Nancy Harris Bonk Moderator

    Hi Luvmyfam22,

    Thank you for sharing your story with us – we’re glad you found us! First let me say you’re NOT alone! Many of us have chronic, intractable migraine disease,which takes it’s toll on family, relationships, and careers. Having a good support network is vital when living with any chronic illness – we’re here for you!

    I’ve been on SSDI since 2009, so I get it. I was a difficult decision to apply for SSDI, but totally necessary. I’ve adapted to my new normal. Some days are easier than others.

    In addition to the great information GardensatNight gave you, I wonder if you’ve had the opportunity to see a “true” migraine/headache expert? These doctors are board certified in headache medicine, which is different than being certified in neurology. I’m currently seeing the 5th true expert and am finally getting somewhere. Sometimes it can take seeing many of these experts before we find the one who will work with us. Let me share information on how these doctors are special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope this helps!
    Nancy

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  • By Luvmyfam22

    I just found this area, I have not been able to figure out how to get here! before I have been just stumbling around now I think I’m actually finding my way around! I have been wanting to say thank you so much for your replies and suggestions. Yes, as I am sure as we all do, we get those ever meaning “Hey, I have the cure for your migraine!” suggestions from friends and family. But it means a lot coming from you both because I know that you understand because you have experience and knowledge with what I am going through. It means so much and I am looking into the infusions as I’ve not heard of that before. So thank you for that. This site has really made a difference in my life already and I am on as often as I am able. Thank you so very much and I look forward to looking into your suggestions!!! May you be well and at Peace

    Karen

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  • By Nancy Harris Bonk Moderator

    HI Karen,

    WOW! You made my day! Thank you for your kind words. We’re thrilled to hear you are benefiting from our site. Please let us know if we can help.

    Nancy

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  • By mrsivyrn

    Hi everyone!

    I’m glad this is the first post I found after signing up.

    I’ve been struggling with migraines for 13 years, but this has been my first ever round of migraines lasting more than 1 to 3 days. I’m currently riding a coaster that has been up and down for 16 days – nothing to some of you, but it’s been torture to me. I’ve had new symptoms with this round as well, including new visual changes and dizziness.

    I hope I can find support in a community who feel the same pain and frustrations I do!

    – Paige

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    • By Nancy Harris Bonk Moderator

      Hi Paige,

      Welcome to the Migraine.com discussion forum – we’re glad you found us, but sorry you have to be here!

      You’re definitely not alone, I’m sorry to say. We “get it” here and will support you any way we can!!

      Nancy

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  • By Luvmyfam22

    Hi Paige ~

    You have made my day as I sit in my semi-sunny living room for the first time in weeks with my totally cool Thera-Specs on to block out what light is coming in. This site has given me hope, encouragement and great ideas. I hope that it will bring the same to you and bring you some sense of peace as you work through this stage of your migraine journey!

    Best wishes!

    luvmyfam

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  • By Truth101

    #101382EDIT | REPLY

    Truth101

    PARTICIPANT
    I really feel bad for everyone here and want to add this. Hope it helps. I had something I called the rainbow ocular migraine. No pain, just it impacted my vision with this vibrating rainbow vision that really affected my ability to see. Then it was followed by a central focal point blindspot. All total about 30 minutes of not being able to see well.

    Come to find out this was caused by aspartame………..anytime I had anything artificial sweetener at all, this happened to me. I now eat nothing or chew nothing that is non fat or artificially sweetened. I only use brown or raw sugar, or agave or honey. Absolutely nothing else. If I do this, I don[t have these anymore at all, but you have to be very careful. read the labels….

    The other thing is I have had horrific pressure headaches where I felt like my head was being pumped full of air and about to explode. This was due to MSG. I moved to Canada and it stopped because their laws are different than ours about what is allowed into their foods but that is changing….

    Natural flavorings along with a long long list of other names for MSG is in our processed foods so, again read your labels and eat fresh.

    I moved back to the states and these headaches have started again so I have to be extremely proactive about everything I eat and cannot eat out at all unless it’s sushi and even then – no soy sauce. We are being poisoned. Have now for a long time. So eat fresh as much as possible.

    The other thing that i wanted to share is I had a friend who was trying to run a childcare facility and her migraines prevented her from that. She went from doctor to doctor and finally one said – you need to get off gluten. She did like her wine and beer for one thing but she ate alot of gluten. She got off of it and her migraines went away 100%, just gone!

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  • By Nancy Harris Bonk Moderator

    Hi Truth101,

    Thank you for sharing your story with us. Aspartame, gluten, MSG and many other things can be strong migraine attack triggers. If we are able to identify and avoid the triggers we can, like keeping a regular sleep schedule, staying hydrated and not skipping meals, we may be able to reduce our migraine attack frequency and severity!!

    We look forward to hearing more from you!
    Nancy

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  • By LynnW

    I’m so glad I found this thread. I know now I’m not alone. I just started having migraines out of the blue this past October. Since then I’ve had 9 migraine-free days. Just 9. None of the meds I’ve tried have brought any relief. Luckily, my daily pain varies in intensity, getting worse as the day goes on and allowing me to function most mornings. This means I manage to go to work most days, although I fear my job is starting to lose patience with me.

    Anyway, know you’re not alone. I’m so relieved to see others like me.

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    • By Nancy Harris Bonk Moderator

      Hi LynnW,

      Thank you for sharing your story with us. It’s true – you’re not alone! There are over 36 million of us with migraine disease!!

      Please keep us posted on how you are feeling,
      Nancy

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  • By copework

    This is my first day on Migraine.com after a friend yesterday confirmed migraines present themselves in many strange and undecipherable symptoms, not just painful headaches with auras demanding bedrest in dark rooms. Like you, 25 years ago my days and weeks starting sliding out and away from me; there was and is a nasal blocking congestion; a parching, to bleeding, dryness in the upper passages; and an unrelenting ache behind/inside my nose. I call it a headache behind the nose. There is blockage that feels like tissue swelling in the right nostril, sinus cavity, and eye. Both eyelids are always puffy, ears are ALWAYS “stopped up”, have recently developed tinnitus, and frequently hear “radio stations” in sound waves from fans, air cleaners, air conditioners, etc. Have to close doors or turn off offender. I have gotten a clean bill of health from all these doctors with a shaking head since they cannot explain the acting-out symptoms.

    Less than 10 years ago my internist caught my immune deficiency disorder and I receive IGG infusions monthly; there was the belief these infusions would help with sinus. Not. Other than inordinate arthritis stiffness in torso and knees, I am healthy to all appearances. My primary, ongoing complaint is the stuffyness, fuzzy, dizzy (vertigo) feeling in my head that shuts down my whole body. I feel too exhausted and brain fogged to think about the simplest thing. I just need to go lie down because I can’t stay awake. And I can sleep for hours; sometime after enough hours of sleep, maybe two days, I can be better though never symptom clear. For years I’ve been “chasing this ambulance” through a variety of neurologists, internists, ENTs, allergists, dietitians, and MRIs looking for non-existent sinus abnormalities and even brain tumors. One doctor even implied a stroke, which proved to be an erroneous red herring.

    Life Stressors have been continual throughout my life. Five years ago, my aging husband’s dementia took the part of my personhood that Migraine? had spared me to catch a pleasantry. Obviously, lack of sleep and mental/emotional stillness provides fodder for my chronic disease.

    I am so aggrieved that at now 74 years old, given an incredible gift of interests, humanitarian nature, and lover of strong physical labor, half, no exaggeration, of the past 25 years have felt like a semi-comatose existence. I’ve given up that somewhere I will get diagnosed or helped before I die, and I think “What a waste of good material!” If nothing else, I would like to know what happened to me.

    This is a long “comment” offered up from a long life of battling weekly to participate in days made available by feeling well enough.

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    • By Nancy Harris Bonk Moderator

      Hi copework,

      Thank you for sharing your journey with us. We’re glad you’ve found us, but sorry you have to be here!! I can tell you you’re not alone – we’re here for you and understand!

      Your friend is correct, a migraine attack can have many varied symptoms, which we all experience differently. In addition when we have multiple chronic illnesses, it may make treating migraine disease more difficult.

      The last thing you probably want to do is see yet another doctor, but I would encourage you to seek out the expertise of a true migraine expert. These expert doctors are board certified in headache medicine, which is different than being certified in neurology. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. When you get a moment take a look at this information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

      I hope this helps and look forward to hearing more from you.
      Nancy

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  • By emi346

    Hi All!
    Like you I have chronic daily intractable migraines, and I have for the last five years, which seems like nothing compared to what some of you have gone through. How have you gotten this far? I’ve had the same migraine for over a year now, I had to drop out of school, I lost contact with all of my friends and the ever so important support-system is non-existent. I’m only 18, but I feel so tired and hopeless, do you have any advice for someone who’s at her wits end? I’ve seen both headache and concussion specialists (my migraines are post-traumatic) and have tried everything from botox to hypnotherapy (I know, I know, sounds crazy, but it was in a hospital with a pain psychologist). Anyways, it’s nice to see that there are others out there, even though I wish there weren’t.
    Yours in painful camaraderie,
    Emi

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    • By Nancy Harris Bonk Moderator

      Hi Emi,

      Welcome to the Migraine.com discussion forum, we’re glad you found us!

      As you can see, you aren’t alone!! There are over 37 million of us with migraine disease.

      Try not to lose hope – there are new medications and devices, and over 100 medications and supplements that can be used for migraine prevention! It can become discouraging when nothing seems to work, we understand and are here for you.

      Nancy Harris Bonk, Moderator/Patient Advocate

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