Feeling hopless

It feels like I am losing the battle with these migraines.. No one is able to help and now even My PCP Doctor and just told me he can no longer offer me anything new that would or might help.. I feel like there is no hope.. I know everyone always say “well at least you don’t have cancer”.. I am very thankful I don’t and pray for the ones that do, but when you go to sleep in pain and wake up in pain and have no relief or direction on what to do, it can make you very tired and mad..


And I just got out of the hospital and now the 5th neuro doctor has told me the same thing and ask “Well why do you come to the Hospital then”.. I was so mad.. I come to the hospital because I can’t take the pain any longer.. Even when I go I don’t even ask for pain meds or a script for them plus they just can give you a rebound h/a.. So that there should show that I am not a drug seeker..

I do understand how the doctors feel when a migraine pt comes in and think they are faking it but after 10 year of suffering, 40+ different meds, botox, nerve blocks, chiropractor, spinal tap, oxygen, CT, MRI, MRA, herbs, everything you can try at home.. I really feed there is nothing left to try and that I will prob. just suffer until the end.. I am unable to work due to these and I have two small children at home..

I am just wanting to know how many out there feel this way and what is there left to do?? Thanks!

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Comments

View Comments (11)
  • Kim Leonoudakis
    4 years ago

    Hi, I’ve been there too. I’ve also tried everything. DHE in hospital stays, botox, oxygen therapy, magnesium therapy, physical therapy, massage, diets, nerve blocks, dentist, chiropractor, acupuncture, meditation and every abortive and preventive meds available. I also have a migra-cap. I also have live on opioids! Horrible! I didn’t find a cure but a way to manage them. I got a neuro-stimiulator implant in July 2013 at the Reed Migraine Center in Dallas Texas. I GOT MY LIFE BACK!!! I can’t tell you how amazing it feels to wake up without a migraine and have energy. Please check it out. The best is you can do a trial and see if works for you. Mine is occipital nerves and supraorbital nerves. Good luck!

  • karen rollins
    5 years ago

    how about a cure you never was told about? it has happened to me, but because it doesn’t have meds or constant visits who in the medical community would tell you about it? 44 years suffering. I will be 48 in 2 weeks. a man just cured my migraines, NO MEDS, NO SURGERY. he changed my bite. I have a temporary orthodic. should have had 3 episodes this week…. not even ONE inkling of pressure. I get them 5-7 days each month. or should I say DID… when it is time for the temp to be removed we will determine the best way to correct my bite and my life will be migraine free. all the meds I ever tried had the same symptoms of the migraine. light and sound sensitivity, confusion, nausea and vomiting, exhaustion. I’m getting my life back. this video link here is regarding how the jaw has sooo much influence on the body. this is what made me decide to try this treatment. Just go to leadingdentist.com and it appears on the home page….. it is in the top left corner and you can click on and watch it on utube too. a guy draws caricatures thru most of it. enjoy 🙂

  • Suellen
    5 years ago

    I am right here with you, please don’t lose hope. I’ve been through it all as well. Not only do migraine medications not work for me, but I have severe adverse reactions to them. My pain relief arsenal now only consists of Tramadol and Morphine and my PCP recently decided she is no longer going to prescribe the morphine, she wants me to go to a Pain Clinic. In the last 18 yrs, I’ve been to every clinic in my area and to the Michigan Head Pain Institute twice with no lasting results. The local clinics have put me on daily doses of narcotics which is no way to go through life either. I received my first round of botox injections in January. I don’t seem to have that daily nagging pain, however, I get migraines more frequent now and the pain is nearly overwhelming with a longer duration. I’ve traded daily pain to three major migraine events a month that last two to four days.

    My main trigger is the weather, no controlling that. I’ve been unable to work for 13 years. My daughter is 22 now, I started to get migraines when she was four. As she got older, she began to take care of me, especially after her father and I divorced. She and I are very close, but I wish I could have been a better mother.

    A couple of things that I have found that can sometimes make a difference is: getting outside to walk everyday, even if I don’t feel like it, I put one foot in front of the other. I can at least tell myself I didn’t sit or lay in bed all day, I accomplished something. Distraction: what ever I can handle, I do seek and find puzzles because they are easy. Music, or sometimes I can work on the computer or watch television, but not always. On a personal note, sex helps too, as long as I’m not in so much pain I don’t want to be touched or nauseous. I distract myself to not to give in to the pain and loss of control I feel when I get a migraine.

    I went to a Physical Therapist for my neck because a lot of times I would get rid of my migraine but the pain would linger in my neck and rebound back into another migraine. Neck exercises and “icing” has helped with that problem. Icing is to ice down the neck and shoulders. Fill Styrofoam cups with water and put them in the freezer. Once frozen tear the cup down until the ice is exposed and rub it on any inflamed area in a circular motion so you don’t hurt your skin. Stay in contact with this forum, with people who understand what you are going through.

    I wish you the best, don’t give up, we are in this together. God bless you.

  • karen rollins
    5 years ago

    read above. I also, 44 years of suffering. lets get rid of them, not just medicate them.

  • Lauren
    5 years ago

    I know the feeling of your PCP not being able to help or offer anything new to try… With my PCP I was just happy to have him tell me that he didn’t know what else to do/try (that way I could find a migraine specialist that might could). I can tell you that I am right with you with the meds, I’ve tried just about every medicine possible as well and I know it’s too many to even count. I haven’t heard of people getting nerve blocks, spinal taps, or oxygen for migraines so I can’t give my opinion on that. I have had my migraines for about 7-8 years now and I have gotten the “drug-seeker” label before and I am not, but for all neuros in my town – they do not care. I recently started going to a neuro out-of-town (patients always get referred out-of-town because the docs there are very knowledgeable, nice, don’t treat you like a number, and I think they really care about the pt’s well-being). It’s rare to find that connection with a doc but you might try going to a migraine specialist in a different city… and one that is highly recommended. I received my first botox treatment 2 days ago and I really hope this works for me because it has really impacted my quality of life and I imagine the same for you as well. I know you have already tried botox but I have however heard of the “transforma procedure”. From advancedmigraine.com website: The Transforma Procedure harnesses the science behind neurostimulation to target the occipital and supraorbital nerves thought to be the underlying cause in severe migraine attacks. This procedure has successfully reduced or eliminated chronic migraine symptoms in over 80% of patients. **I don’t know anyone that has had this done but you might could do some research on it and see what your physician recommends. Also there is some new headband called a “cephaly headband”. I’m not sure what the website is for that one but I think migraine.com has a article about it…(but I would do a good bit of research on those two things I mentioned because as I said I don’t know anyone that has had either). And please don’t give up hope. I haven’t given up and I know its hard but there has to be something. **I also bought some cold-caps that are called “migra-caps” (which are so much easier than grabbing a “beanie cap” then the 3-4 ice packs to go inside it and then the ace bandage to hold it all in). The migra-caps I got are so worth it, I got two: one for freezer and one for head just in case… they stay cold for about 45 minutes. You may want to have a smaller ice pack to go in the top of the cap because they have a hole in the top for people that want to pull their hair through, I like the cold to be everywhere. I hope this helps and good luck.

  • karen rollins
    5 years ago

    no…. CURE it don’t medicate or treat the symptoms. read my cure above. it works. I’m migraine free after 44 years.

  • kyange
    5 years ago

    I feel your pain. I recently had a week without migraine. Now I have crashed. The list of treatments I have tried is the same as yours. It’s nice to know I am not alone.

  • Arrienne
    5 years ago

    I empathize entirely with you. I’ve had migraines for over fifty years, been on every treatment to no avail, stopped going to the e.r. entirely because of negative attitudes by the professionals there and no relief really felt anyway. Sure, there are drug seekers out there….but fifty plus documented years still counts for nothing. Feeling hopeless just like you…..plus angry at the treatment dished out, ticked that the DEA makes doctors afraid to prescribe medications for real pain, frustrated at not finding any relief, depressed at not being able to engage in a full life due to crippling migraines, sick of snide comments about just another day of pain…and so much more. You are definitely not alone in your feelings! I will add you to my long prayer list.

  • GinaD
    5 years ago

    I am sorry – I also am frustrated by the inability of any treatment to help, and I feel like I’ve tried them all. Please hang in there.

  • Katie M. Golden moderator
    5 years ago

    Khendricks85,
    Trust me, you are not alone! And you are absolutely allowed to feel frustrated, sad and even grieve for your loss of a normal life. But what you can’t do is give up, even when your doctors have. Sounds like you’ve been through a lot of treatment plans, but I’m going to throw out a few other options that maybe you haven’t tried.

    Have you ever seen a Headache Specialist? Not just a neurologist, but someone who has specialized training in headache diseases? Here’s some info: http://migraine.com/blog/how-are-migraine-specialists-different/
    https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Have you ever looked into a Headache Clinic? I’ve been to the Jefferson Headache Center in Philadelphia who has helped me tremendously after I thought nothing else was going to work. You can read my story here: http://migraine.com/blog/headache-camp/
    But there are other centers like this- Diamond in Chicago and the Michigan Headache and Neurological Institute.

    And lastly, there are new things coming on the market all the time such as the Cefaly, an external device that uses electric pulses to stop the pain. I’ve not tried it, but it’s worth looking into.

    http://migraine.com/blog/external-nerve-stimulation-device-for-migraine-prevention-receives-fda-approval/

    I get your pain. Just keep fighting!
    -Katie

  • FrustratedPatient
    5 years ago

    I wish I could offer you some brilliant words of advice but truth is, all I can offer is my empathy.

    I have had migraines for @35 years and I’ve pretty much been cast off as a lost cause too, I also know the fear of going to the ER & being labeled a “drug seeker”.

    My two main triggers are the most difficult to treat, not much anyone can do about either (menstrusal cycle & weather). I’ve had periods where the attacks are not as bad, but have not gone even a single month without an attack since I was @6 yrs old.

    Again, wish I could say I had the secret for the magic cure. Maybe knowing it’s not just you may give you some solace, however.

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