Non-responsive acute status migrainosus
I have suffered from migraines since 2003. My longest continuous migraine was two years, lasting 2015-17. I then went into remission in September 2017 with 200 units of Botox every 3 months. I relapsed on Dec 23.2023, I have had a nonstop migraine since then. I just finished a weeklong failed hospital admission. I was given DHE for the third time. It never worked any of the times it was administered. No other drug ( toradol, mag, reglan, or anything else IV has ever had an effect. The pills are completely useless for me. If I sound desperate, I am. I doubt I can withstand much more. Does anyone else out there have a condition like mine?
Thank you for joining the conversation. I'm so sorry you are dealing with chronic debilitating pain again. I hear how frustrated you are over this and I don't blame you one bit. Please know we're here for you.
There are many of us who have intractable headache pain, I did for many years. Thankfully Botox has been a life saver since 2016. I have to admit I'm concerned it's efficacy as this last series of injections doesn't seem to be as effective.
Has the doctor provided any other answers/suggestions for you? Try not to lose hope there are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to manage migraine disease and most of us are on a combination of these, I sure am! Sometimes previous medications can be restarted with better results.
The other thing that comes to mind is getting another opinion. There are doctors who are board certified in headache medicine that can have a huge impact in our care. General neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Many general neurologists who treat people with migraine and headache disease claim to be experts but that may not be 100% accurate. A true migraine expert is board certified in headache medicine not all neurologists have, and treats migraine and headache all day, every day. Here is more information on why these doctors are beneficial and where to find them;
1) https://migraine.com/blog/really-find-headache-specialist/
2) https://migraine.com/living-migraine/change-thoughts-new-care/
3) https://headaches.org/resources/healthcare-provider-finder/
4) https://migraine.com/living-migraine/how-to-find-a-neurologist-or-headache-specialistLet me know what you think and I look forward to hearing more from you. Pain free wishes heading your way, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member
Hello
Nancy,
Don’t worry! The chiropractor is not going anywhere near my neck. Even without mig, I would not allow that. But I appreciate the heads-up, as I myself would be concerned if i thought a migraine sufferer was going to get neck manipulation. Eeeek!
I am still
Learning about NAOT. I go back Friday. I’m learning more, but basically it’s a revisiting of Chinese medicine. The theory is that because of our modern lifestyle, the old system of meridians , while still profound, is no longer adequate. Like I said, I really don’t know yet if it’s pure baloney. I’ll write more as I go in deeper. The practitioner says that we develop “ allergies” to everyday things that apparently can be eliminated, producing relief. One thing I can say, is that the guy is not flaky and is very smart. It makes a lot of sense, at least in my rudimentary understanding.
I am so used to telling my story again and again that I’ve practically become immune. But it still takes a huge toll on me, so reading about how hard it is was so validating. And I’m so sorry that others have had a tough time with “ headache drs” but at least I know I’m not alone.
I see a new neurologist on Thursday. I’ll do it, but to be honest I don’t have high hopes. I was lucky to even get the appt. That’s a sad statement. Maybe she will have something to say. I’m not categorically against headache specialists. If I got a trusted referral, I’d try another headache specialist, but I’m really really worried about the financial aspects. But I’m going to revisit finding a mig specialist. I think my grief ( she took her own life) is eating away at me. I have so many deep, strong, conflicting emotions. And , although I have some real class-act friends, I am profoundly lonely.
I am so glad I found this forum. I am so scared that this mig wil wreck the rest of my life. Before the relapse, I was on the fast track to big success. Now all bets are off. I’m so scared. But I’m going to keep fighting. I’m guessing I’m not depressed, and I have strong mental health support. But this is tough. I am dreaming about the 100 options out there! 🙂Thank you again for your thoughtful reply. I am so glad to be here. My partner was only 33 at the time of her death. I miss her so much. Thank you for your continued support.
We're happy you are here too. Our community is full of wonderful supportive people. Fingers crossed you have a low pain day, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member
, Welcome to the migraine.com community. We are glad you're here. I'm sorry to hear that you have been battling with constant migraine again after being in remission. My husband's migraine attack cycles are very similar to yours. He refers to his attacks now as cycles because they never truly subside despite an intensive combination therapy regimen. When he is hospitalized the only thing that ever gave him some relief was IV thorazine for a few days. It is rough on your veins and they will change his IV site to reduce the effects. He is now labeled with chronic migraine but was previously labeled as chronic, intractable migraine. I believe they use the term refractory interchangeably. Hospitalizations are mainly used to break his attacks when they are at 8 and higher for a couple of days. He dislikes going to the hospital, but there are times when it needs to happen. Are you receiving any other preventative in addition to Botox? My husband, Tom, had good luck using Ajovy with Botox. His attacks were lower pain, but the insurance carrier wouldn't pay for both so he dropped Botox and added magnesium and Nurtec. Tom also has a secondary headache disorder, New Daily Persistent Headache(NDPH). This plays into his attack cycles but nothing has helped this condition to date. He has lived with the two conditions since 2012. He's had migraine since 1986. I'll let you look at these resources and see if they might help you. https://migraine.com/blog/the-ins-and-outs-of-intractable
https://migraine.com/living-migraine/new-daily-persistent-headache-diagnosis
https://migraine.com/living-migraine/how-do-you-break-wont-stop.I hope these help you. This community is filled with people who understand what it's like living with migraine disease. We are here to guide and support you, but we are able to provide medical advice. That being said, we are here whenever you need an ear and/or a shoulder! Warmly, Cheryl migraine.com team
Hi Cheryl,
I’m so sorry about your husband. That’s so hard. I can most definitely relate. I couldn’t get the links to work and I really want to read them? Could you plz repost?
The pain scale being the bizarre piece of idiocy that it is, I’d say my pain is at a9-10 24/7. But I have a high pain tolerance. So subjective.anyone in pain has it very rough. Period. We all know there is no way to really measure it. I’m pretty sick of being asked the pain scale question. Then they go in deeper “ if 1is very little pain and 10 is the worst” blah blah blah. So I usually say “ 25” or “157” because I am honestly flabbergasted. If my pain were at a 5, I wouldn’t be seeking medical attention! Im guessing your husband might relate. I don’t think I’ll ever go to a hospital again for mig. I went to a “ world-leading” hospital here in nyc and all they succeeded in was making me worse. The thing that no one can figure out about me is that I’m fully functional and have a cheerful demeanor. My theory is that being that way helps me cope, but very often it results in medical staff thinking I’m faking or it’s not so bad etc etc. But I feel like hell. My migraines must cycle somehow, as that is my understanding of how migs work, but I experience non-stop symptoms with no relief. Ever. Except during the “ Botox years” 2017-23.
yes, for us visual learners this chart is fantastic! We hope that it helps you best identity and describe your experience with migraine. Most of all, we hope that you get to enjoy more days out of the the "what the heck" category. It's certainly what we all want!
Best
Alene, Migraine.com Team Member
, I thought you might get a chuckle from that pain scale. I've found that the medical community operates on the premise that they can quantify the patient in order to provide care. Pain is far too subjective to be neatly placed into a check-box. I find the use of an impact scale to be a better mode to determine what a patient needs and wants. How our experience impacts our life is more telling than my pain is 1 or 10. Some of my most compassionate doctors are the ones who also live with the conditions I have because they have a real life understanding. I am hopeful that insurance companies will someday have less control over how a doctor manages our healthcare. Wishing you migraine-free days, Tom migraine.com team
Really great ideas! Thank you so much . I really like the functional pain scale. I’d say I’m almost always at 3 on that, sometimes 4. It’s much more informative!
I'm so happy to hear that the information was helpful. It's great to have something like the functional pain scale. Information like that is always so powerful!
Best
Alene, Migraine.com Team Member
