Sedation treatment in hospital to releave intractable migraine?

I remember poking around the internet and coming across a treatment option for intractable migraine using some kind of sedation for up to 5 days. I just can't remember what medication it was that was being used.

I'm an old/new member, belonged to the old forum, and just came back to find ideas and support for my 15 year old daughter. She was in the hospital from last Monday thru Saturday, then as she was vomiting so violently, she asked to to back Sunday morning. The pediatrician met us in the ER and after one look (and checking her) he said he's go get a bed for her on the ward.

So far, she's had a migraine for 4 weeks, had a clean MRI, had an opening spinal fluid pressure of 23, which they reduced down to 11, been through all of the standard first line meds, with her doctor starting her on alternates, such as Imatrex and IV caffeine. They have also done tests for her pancreas and liver, to ensure the meds aren't damaging her organs. She is also scheduled for a CAT scan to ensure she doesn't have any blood that leaked into her spinal fluid during the LP.

She has finally stopped vomiting after they gave her a stronger dose of IV Zofran, but her pain is still at a 10, and has been since Thursday. I'm desperate for ideas to break the pain, or at least get it to a 5 or 6. She is so out of it, that when the nurse asks her what level her pain is at, she just stares blankly at them. They have to get the picture chart because she is in too much pain to even try to communicate.

She has gone through several strong narcotics (butalital combine, morphine, dilaudid, Vicodin, Tylenol w/codeine) and none touched the pain, so the doctors have discontinued pain medication (just giving IV fluids and Zofran) so I'm desperate for any ideas.

My husband is taking a turn staying in the hospital with her, which is helping me chill out a bit, and spend time with our son. I still can't turn off worrying mommy mode, hence my post.

I know of some kids who went through some very rough neurosurgeries who were given Precidex afterward (to put them in a coma). I've never heard nor read of it given to migraine patients to break a pain cycle.

Ketamine comas are done in Mexico for patients with RSD (they used to be done in Germany, but not any more).

I'm sorry your daughter still is in so much pain!

Cheryl

Thanks for the info! Luckily, her pedi neurologist is back from her conference and saw my daughter last night. She was NOT happy with my daughter being told she would just have to find a way to decide she wanted to live her life and put the pain aside, and then kicked out while vomiting.

Her neuro says she is battling TWO separate headaches, one the original migraine, the second, a post LP headache, for which there is no cure. She did read the results from the CAT scan and gobs of blood tests, and all were clear, so yea! The next good news is that they are doing a blood patch for the spinal tap today in the hopes that if there is any leak causing continuing pain they will fix it. She is also being put on Lyrica as a preventative, and a bit of a treatment. The pedi neuro also agreed with me that my daughter has to be eating, drinking and taking her meds by mouth for at least 12 hours before being released, along with having her pain down to at least a 5. (I was really worried that they gave up while she was at a 10, so it is going to be addressed)

Now I'm calm again, and not so desperate for radical treatments (not really a fan of the idea of doing that to a 15 year old, but I was desperate). My hubby has taken over hospital stay duty, as I have several auto-immune issues (fibromyalgia, meniere's disease, RSD, and Narcolepsy -along with my own migraines). He is the family clown, so I know he will keep her spirits up, but he also has ADHD, so I wondered how he would deal with staying in the room so long with her. He bought a book! (Duh, mom!!) Anyway, today will be a bit hard as they are doing the blood patch, and she has to lay completely flat with as little movement as possible for 24 hours after.

Thank you all for your kind words, ideas and support!

Hi,

I am so sorry to hear about your daughter's migraine.

I have been dealing with chronic intractible migraine/new daily persistent headache since age 17, now 30. I remember that the first monbth was particularly difficult. I basically lived on Tylenol # 3 for pain and other things were tried- steroids, imitrex, DHE, etc, neurontin, etc.

I have been hospitalized several times for migraine. The few things that helped are as follorws- IV Solumedrol, IV Bendryl, IV phenergan, IV pain meds.

The one thing that eventually made a huge difference were nerve blocks and radiofrequency bilaterally. This eventually led to the impllantation of an occipital nerve stimulator in 2004. This is kind of like a pacemaker, except it is for the occipital nerve in the back of the head. The first eight months with the stimulator, I was in remission. the headaches are back now, but the stimulator means that medication workss (most of the time) For really bad ones, I will get an IV of Depakan, benedryl, phenerrgan and pain meds at the IV/home health center here.

I hope the blood patch helps.

I am really glad your daughter's neuro is on top of things and I totally agree with you about the "living with it" part- cartainly not at this time. I eventually had to come to grips with the fact that there may not be a quick fix, but there are many ways to try and manage them or, in my case, try to control the pain so I can live.

Please let us know how things go.

Pain free days,
sailingm

I am 35 and have had my migraines since I was about 7 years old. School was horrible, and I missed out on so many things growing up, especially when I was your daughter's age. I feel so bad for your daughter. One of the main reasons I haven't had kids is because I am so scared that they would have to go through what I went through, and still go through.

The first time I went to the nurse with a migraine in grade school, she told me to deal with it and sent me back to class. I ended up vomiting on the floor in class, and taken to the hospital. Those types of memories pretty much scar you for life. I can barely remember anything from when I was that age, but that memory is like a video playing in my head.

I wish I could say something more encouraging. All I can tell you is that despite all of this, I have dealt with it and most people would consider me to be a very positive person. While I hate my pain, I enjoy my life.

Good luck.

Blood patches can hurt pretty badly afterward (back pain), but it will get better. Patients liken it to having an elephant standing on their back. I know Anna's one patch hurt a lot!

Glad the pediatric neuro is back on the case! Keep us posted, ok?

Cheryl

Sorry to hear your daughter's still in so much pain. I just had an LP headache two weeks ago myself- ugh. Most narcotics and opioids make me nauseous so I took nucynta which I take now and then for pain, though it only decreases my pain by a couple notches (but anything helps).

Anna's mom- interesting information about ketamine. I am hoping I will be able to try it. My sister is a pediatric specialist and told me she uses it with her pain patients here as well.

That is awesome about your sister. Is she successful in getting insurance companies to pay for it?

Are you on Facebook? There is a "Ketamine Klub" on FB where people share lots of good info about getting Ketamine treatments. Just put it "Ketamine Klub" in the search box.

Cheryl

I'll definitely check it out on facebook- thanks for the info! I never even heard of ketamine until a couple months ago. I mentioned it to my sister because I was a little freaked out by what I read and she said they use it for cancer patients quite often (she's an oncologist). I haven't asked her very much else.

Praying for you and your daughter..I'm so sorry..

<3 you

Thank you all for your kind words, support, and prayers. My husband was able to have a priest at the hospital stop by before the blood patch procedure, and say prayers for her, and I have to say I believe the extra prayers from all have helped. The procedure was a success, and she now has NO back pain!!!! Yay!!! Her head pain is down from a 10 to a pretty steady 8, even after she showered!!! It looks like we're making progress.

I can't believe that we're going through this again, but at least we are both keeping our spirits up a bit more than this time last year. We know that there was an end once, and believe there will be again. My job as mom is to help find it sooner than later. (Also to work with the school district, keep her from being marked truant, and again move her to Independent Study). As I was searching, I came across my old post and wanted to bring it back to see if anyone has any thoughts or information. Thank you to all for being patient with my slightly frantic posts.

As I wrote in my other post, I'm so sorry that your daughter is going through this hell. It reminds me so much of the grueling treatments that I've gone through for migraine. I used to post on this forum years back, too, so I'm pretty sure that a few people probably remember me as the girl who gets migraines that last for several months.

I've been getting migraines for 20 years. As each year went by, my migraines began lasting longer and longer. First my migraines lasted for days, then weeks, then months.

Now, to my utter dismay, my migraines have been CONSTANT for the past 2 years.

I've tried IV DHE, Depacon, magnesium, etc.---NOTHING breaks my migraine. I've also tried EVERY triptan and ergot---no luck. I've tried dozens of preventatives, too, with little or no success.

Every neurologist I went to told me I'd already tried everything there is to try and that there was nothing they could do to help me. I really have tried basically EVERYTHING to try to stop a migraine.

I finally found a great pain management doctor. (It looks like I'll never be rid of the pain, unless a miracle occurs). The pain meds get my pain down to a level where I can function at a basic level, at least. But I still can't work or have any semblence of a normal life.

I'd give anything to just be pain-free for even a month or so. I really miss the "breaks" that I used to get from migraine. Even though my migraines were always excruciatingly painful and progressively lasting longer and longer, I still never expected my migraines to go CONSTANT. It's a very tough thing to come to terms with.

Hopefully your daughter's migraine will break soon and she will find something that works for her. I just wanted to let you know that I can relate all too well to marathon migraines.

Best Wishes,
Brenda

Thank you to everyone for your sympathies and replies for my daughter. At 16 I know that it's been hard for her to hear she may have to live with the pain. She has tried so many pain medications, but she hates the way they make her feel (foggy, and still in pain) so at this point she has chosen to move to an independent study program for school, and just live with the pain. I've promised her that I would keep searching until we find something to help, which cheered her up when the docs told her they tried everything and she would just have to live with it. That was too much for me to hear at 30, so I can't imagine how she felt at 16. She's started her bio-feedback classes. Also, she is now moving from a 7 day treatment of Depokote to a 10 day predisone taper to try breaking the pain cycle. The latest two meds are from her new Pediatric Neurologist, who has also approved Botox treatment, which my Neurologist agreed to administer once we had approval from a Pedi Neuro (he only treats adults, but is willing to help since he's been my doc for 16-17 years). I figure that if we keep throwing enough treatments, along with removing as much stress as possible, she may get a break from the pain. At that point, we'll discuss preventative treatments. I'm pretty sure she won't be willing to take daily meds, but we'll cross that bridge when we get there.

In the meantime, are does anyone have any pain meds or migraine abortives that have just come out in the last 1-3 years? Her last hospital stay they threw 2 weeks worth of meds at her with no help (but did leave her feeling much WORSE). Just thought I'd ask the community, as everyone here has so much experience!

Thanks to everyone, and Happy New Year!!!

I'd never trust one or even three doctors of their opinion that they have tried everything. That is nearly impossible. There are many more meds out there, although possibly similar. I'd go through the lists of common categories of meds and see which she has tried, such as the following: anti seizure, anti depressant, beta blocker, calcium channel blocker, analgesics, muscle relaxers, narcotics, etc.

There are seven or eight triptans. Probably close to 10 narcotics. A good handful of muscle relaxers. The list goes on. Of course some are more commonly prescribed that others. If she need a break from the scarier meds (which for me were anti seizure meds), maybe something potentially milder such as a beta or calcium blocker, or a muscle relaxer, analgesic, or narcotic?

What about Minocycline or Doxycycline? Some folks with constant headache respond to one of those (an antibiotic). Dr. Rozen and such have even combined it with Singulair (an asthma med). For what its worth, she is lucky to have the opportunity for an in patient stay...that is not something that anyone ever offered me. Sorry she is struggling. Its good she may be able to try Botox (very low side effect risk if done by an experienced doctor), although I'm not sure the stats are any better on that than any of the meds. Best wishes.