Dear Patrice & all of us who are a part of this pain together,
Your words resonate so much w/me at this moment. Thank you for expressing all that you did as for a moment it is reminding me as i sit slumped over in pain yet so desperately holding onto the power of hope, human connection and faith, I'm not alone. And that may not take away my throbbing pain which has been non-stop for months, it does nourish me and us all, I suspect, on an emotional & spiritual level. We're in this boat together.
May i ask if any of you have done the dhe iv 3 day hospitalization for chronic, intractable migraines? my neuro is trying to admit, after having sent me to the er a couple of times, to attempt to get me addmmited & treat me this way, yet it has fell through. and now we ironically found out our doc is 'out of network' which means huge costs would be incurred if i'm admitted (we're military). we're meeting w/my primary doc tomorrow to try and receive authorization for the treatent and look at other options...i'm trying to hold out going to er again to just have pain masked & to yet again have to set up a comfortable place for our daughter so she doesn't have to go - thank goodness she has been so patient in all of this. she's 10 and she gets what you conveyed Patrice, on some level...yesterday, in her loving, intuitive way she said: "mom, you have a disease which hasn't been identified and I'm scared there's no solution".
i've had numerous scans, emg, evoked potential, doppler ultasound (where it indicated i had some narrowing of carotid artery, 40-60%; mild stenosis, yet my neuro doc says my mra said all checked out so he doesn't think we need to worry about that...i tried topomax 2xs yet couldn't take it long enough due to side effects and took cymbalta yet was on oxycodone and muscle relaxants at same time and had some weird effects so he said to stop cymbalta (note: my pain doc is prescribing the pain meds - have taken for 1 month, then ultram eq and now back to oxycodone - yet no relief). i'm hesitant to do the dhe iv hospitalization and potential spinal tap as i've read about some troubling things re: taking it...one person ended up w/a stroke yet some have had their migraines stop. my doc indicated i could get better and then have a rebound effect. i'm at a point where i always have pain, never stops and do not sleep well, even w/ambien er...so i'm considering it.
What are your thoughts? any experience? are you seeing a regular neuro doc.? he hasn't had me try imitrex yet i've heard so much about it.
blessings to you all!
praying and hoping for resolution for myself and for you all
Hello, and welcome to MyMigraineConnection.com!
Many people have been treated with a three day IV DHE to break a Migraine cycle with success. It is a personal decision, I've never had that done, but have had my share of IV infusions in my doctors office to break my own Migraine cycles.
If the doctor thinks a spinal tap is a good idea, you may want to consider it to rule out other conditions like Idiopathic Intracranial Hypertension (IIH - formerly called Pseudotumor Cerebri PTC). One of the main symptoms of IIH is intractable headache. You can continue reading more on this condition in the article: Pseudotumor Cerebri (IIH) - The Basics.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.
If you have any questions, please feel free to post them to the forum or send me a message through my profile.
Welcome again,
Nancy BonkMyMigraineConnection.com Expert
thank you very much for your f/u. you said you've had iv infusions at your doc's office? can you explain more about that? w/your neurologist or another doctor?
blessings& thank you for your commitment to offering support, edu, & hope, heather
Sure, in fact this article talks about the various types of infusions doctors can do. My neurologist/pain doctor does them in his office. He has a Migraine unit set up where he does infusions.
IV Treatment of Refractory Migraines
IV Lidocaine - Effective Treatment for Refractory Migraines in the Clinic
Let me know if you have questions after you read these, ok?