Forums


Diagnosis of Migraine & Headache Types

Status migranosis

  • By Msmmain

    I’ve had migraines since I was born (my parents say that I would have crying jags for days that absolutely nothing helped). For the last 10 years they’ve been nearly every day. This year alone I’ve been to the ER 33 times (they told me that last time I was in when they explained they will no longer help me treat my migraines in the ER-freaking awesome right?). My former neurologist diagnosed it as Status Migranosis – migraines that lasts for 3 days or more at a time. I end up taking imitrex and relpax nearly every day because otherwise the pain gets so bad I become dangerously self destructive.
    My migraines are also ALWAYS accompanied by severe nausea and I have spent so much time throwing up that my teeth are severely damaged. I’ve had several doctors say that isn’t normal for migraines and even had an upper gi scope to check for something wrong.
    I was reading the article about the Unofficial migraine type Godzilla and that completely describes how I function when I’m having an episode. “your physical coordination is off during a migraine attack (even during the prodrome and postdrome phases), and many of us have bonded over the frustrating symptom of not being able to find the right words when we are speaking or writing” certain members of my extended family have decided I’m secretly a drug addict because of this fumbling confused behavior and that I’m faking the headaches.
    I don’t have aura with my headaches but I do have visual disturbances. One of My eyes goes totally blurry or black in about 20% of my headaches making driving out of the question. I just lost yet another job because I’m so unreliable.
    My depression has consumed my life and I’m just wondering if others who have had this diagnosis have eventually found relief or if this Hell on Earth is what I have to look forward to for the rest of my life.
    Also I keep seeing people who have applied for disability and been approved based on their migraines but every time I apply they tell me that migraines aren’t debilitating and that I won’t get approved. Can someone walk me through getting approved? I live in Washington state if that makes a difference.

    Reply Created with Sketch. reply
  • By Nancy Harris Bonk Moderator

    Hi Msmmain,

    Thank you for sharing your story with us. I am sorry to hear you are having such a difficult time. Let me see what information I can give you that may help.

    Before I talk about SSDI, I’d like to discuss migraine a bit. You mentioned you’ve seen a neurologist, probably many of them, but I wonder if you’ve seen a “true” migraine/headache expert? Migraine/headache experts are different from neurologists because they treat one condition all day, every day – migraine and headache and are board certified in headache medicine. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, Parkinson’s, multiple sclerosis and others. Seeing one of these expert doctors can really make a different. Take a look at this information on how these doctors are so special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/. You are in luck there are actually four doctors in WA who are board certified in headache medicine which may not seem like a lot, but many states don’t have any! Here they are; Dr.John S. Wendt,Federal Way,WA;
    Dr. Natalia Murinova, Seattle, WA; Dr. James A Moren, Anacortes, WA; Dr. Sheena K. Aurora, Seattle WA.

    When we have pain every day it may make sense to take something to relieve it. But the thing is if we take migraine medications and/or pain medications, whether they are prescription or over-the-counter, more than two to three days a week we can create another problem called medication overuse headache or moh. Moh was formerly called rebound and if we are in an moh cycle, our attacks will be more difficult to treat and we can end up in a daily cycle of pain that is hard to break. I’ve been here and it’s not fun, but can be broken. Here is an article on how to avoid moh; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    Migraines lasting longer than 72 hours can be problematic as it can increase our risk of stroke and a condition called status migrainous. Breaking a migraine cycle is important and there are things that can be done to do so. For example a steroid dose pack has worked to break one for me and many others I know. IV infusions are helpful.

    Migraine can be debilitating and people have been approved for SSDI. It is important to have your doctors backing and I used a lawyer which was helpful. We have an entire section on SSDI you can take a look at that is very informative; https://migraine.com/migraine-basics/social-security-disability-insurance-benefits/.

    I hope this helps,
    Nancy

    Reply Created with Sketch. reply
  • By Msmmain

    Thank you for the info. I’ve actually just gotten back from spending the night in the ER on an infusion of Torodol/Magnesium/Promethazine/Solu-medurol/Benadryl/saline for a Status Migranosis migraine ice had since thanksgiving. The treatment brought my pain down from a 10 to an 8, but nothing seems to make it want to drop any lower than that. I originally had a severe sinus/ear infection coupled with streptoccocal pneumonia that was what first triggered it. They did chest xrays and a CT of my head and both seem to be gone, but the headache remains and nothing that usually helps or that they’ve tried has had any major impact on it whatsoever since it started. Before heading to the ER last night I actually had a full-blown panic attac that led to almost 2 hours on the phone with my counselor to get me calmed down enough to function/think. Luckily the panic attacks are fairly infrequent but I’ve started looking for support groups around here that I can attend on days I can be farther than 5 feet from the toilet.

    Everyone I’ve talked to (medical personnel) tells me that vomiting 4-7 days a week because of the migraines is drastically outside the spectrum of anything they know of. Are there other patients out there who vomit this frequently with their S.M. or chronic daily migraines?

    I’m going to try and get some sleep now and hopefully I can function some later on. Some of this stuff I just need to connect with others to show that I’m not alone and that I’m not “faking/deluding myself” As most of my family has started to say.
    Thank you so much for responding and for all the info. I’ll work my way through all of it a little at a time on days I can process. I know I ramble a bit these days and can’t seem to have a logical train of thought without writing it all down and revising a few times. “Migraine brain” I guess.

    Reply Created with Sketch. reply
  • By Nancy Harris Bonk Moderator

    Hi MsMain,

    I’m sorry about the ER, I wish your migraine pain was lower when you left. Feel free to contact me if you have questions about the information I gave you – it was a lot.

    No worries, you are not rambling on, but looking for support and information. Try to be kind to yourself!

    Nancy

    Reply Created with Sketch. reply