2 month migraine-tossed out of hospital, told to live with it

I'm an old member who has just got around to signing back in with the new forum, and (for now) MY migraines are OK/liveable.

My serious problem is for my 15 year old daughter. She has had migraines w/aura since she was 8 and prior to this episode, her longest episode was 10 days. She was hit 9-18-11 with a migraine with no aura, and tried her abortive meds, but they didn't work. Her doc switched her to Imatrex, but still no help. We did the ER and dr visits without breaking it. She was sent home with Vicodin, Tylenol w/Codine, Dilaud. They just made her stoned, but still in pain. Finally we got her in to see a pediatric neurologist. She was hospitalized at the end of the visit! During one ER visit, she was given DHE, and it took her pain from a 8 to a 9 adding for the first time, strong nasuea. Dispite reporting her experience, the doc insisted that it was because she was given the full adult dose all at once. For pediatrics, they slowing increase the dose over 2-3 days, and if that didn't work, she had "other protocols" that would be ordered. She told us about psudo-tumors (elavated spinal fluid pressure), and that VERY rarely she has a patient not respond to treatment, and they are sent home, taken out of school, and just put on rest while she tries various preventatives to see what works.

My daughter was admitted this past Monday, and started on: increasing doses of DHE every 8 hrs, valproic acid, Depakote, Toradal, Elavil, and Zofram. My daughter was not allowed any TV, reading, noise, light, and was to have all stimuli removed for a couple of days, with did make sense (stretching it to the full 6 days was just cruel). She did not improve at all. They then relented and added small doses of Morphine that she was allowed, which still didn't touch the pain. They then tried 2 IV doses of caffine, 12 hours apart, with no change, and finally, a Reglan & Benadryl combo, which also didn't do anything. She asked if she could try Vicodin instead of Morphine, so the switched Friday, but there was still no change.

Then that evening, the doctor came in and said that they tried "every migraine busting drug available" but unfortunately, she didn't respond. He told her she would have to learn at what level she could "just put the pain aside, and go back to school, and get active again." My daughter is a 10th grade honors student, and is devistated that this episode may kill her chance for college, as her high school is on a trimester system (Aug-June) and the end of 1st trimester is right before Thanksgiving. The doctor also pulled me aside and said, "she's reporting higher numbers in pain than her face and body language would indicate." She is VERY tough. I'm disabled with SEVERAL conditions, and am often basically bedridden. Her brother has high-functioning autism, and dad is also disabled with a back injury. She has learned to tough it out, and until she reaches a complete loss of control, she keeps a VERY good poker face. I can read it, but Dr. JustMetYou sure couldn't. I was also having to tell all of the nurses who asked for her pain scale number, that she truely needs to see the picture chart, as she has been a bit "out-of-it" and couldn't coorilate what pain looked like at each number. One DUMB student nurse told me "its just a number, its not that hard." I curtly told her for someone in severe pain over a period of time, YES, it can be that hard, and JUST GET THE CHART. (Sorry, had to let that out.)

This morning she was sent home (being wheeled out of the ward while activly vomiting into the basin) with the home meds of Zofram (nasuea), Lyrica (start @ 25mg then increase weekly to 150mg/preventative), and some Vicodin 500mg (limited use).

I once again heard from a nice doc, who believed her migraine reality, that they had tried every medication, and that there were NO other protocols available to try. He did suggest bio-feedback, accupucture, or to keep looking.

BTW, we have Kaiser (an HMO) insurance, but will be looking for another pediatric neurologist. Also, my daughter is 5' 7" and a healthy body size, so as far as metabolism goes, she qualifies as an adult (the peds doc told me this). Oh! She DID have an MRI (all clear) and a lumbar puncture to measure opening pressure and verify it wasn't an infection. Her opening pressure was a little high (23 instead of the optimal 20) so the took out 12mls (I believe that is the unit of measure they use). The procedure only made her worse, as now she has a massive migraine, AND her back hurts, and she MAY have a post LP headache

Here's where I BEG anyone who stuck with my long post for help by giving me suggestions to bounce off of a new doctor. We live in California, in the Bay Area (close to San Francisco) and if anyone knows of a doctor or clinic who specializes in migraine, I'd LOVE that info. Also, has anyone heard of other abortive protocols? She is so miserable now, that as a mother, it hurts so much to have to just watch and comfort her. I want so much to make it all go away. Thank you for any help!!!

It pretty much rips out my heart to read your post! I've been through this for years now with my daughter, and I know what it is like to feel helpless with this stuff.

If her very severe HA does not improve, I think it is reasonable to seek a blood patch (because of a possible leak from the LP).

Since her opening pressure was 23, a trial of Diamox could help. But not if she is has a CSF leak.

I'm just a mom, not a medical professional. But these are just some of my thoughts.

Did any doctor look at her optic nerves (because of the 23 pressure)?

You may want to look at this website for information on PTC/IH:

http://www.ihrfoundation.org

You can message me at any time, if you'd like!

I'm sorry you are going through this. The anguish is unbelievable.

Cheryl

Something else I'd like to say...

A neuro-radiologist who is an expert in treating CSF leaks once told me that three numbers can make all the difference when it comes to intracranial pressure issues. You can be utterly miserable at one number, but going up or down three numbers can make a big difference in feeling better.

My friend is related to a neurosurgeon. He told her that he has shunted patients who come to his office seeking a one number change (either up or down) in their shunt pressure. He reprograms the shunt, the patient leaves and gets to the parking lot, and then comes back saying the new pressure is even worse. They want to go back to the "old" pressure (easy to do with a shunt programmer). This is with a one number change!

It all just boggles my mind, and being my daughter has had big swings in her intracranial pressure over the years, it makes everything even more complicated for her. Doctors do not enjoy dealing with intracranial pressure issues because it is so difficult. And theyl disagree with each other about intracranial issues, which certainly is not helpful to the patient.

I think an opening pressure of 23 is something to ponder and pursue. Diamox can lower your daughter's pressure enough to make a difference. It is something "simple" to try.

Cheryl

My heart goes out to you and your daughter. I know what it's like to try to function in a high level of pain every day. I haven't yet tried this myself, but my neurologist wants me to try ketamine infusion for my refractory migraine. I'm just waiting for insurance approval. Ive tried dhe, depacon, Thorazine, and lidocane with no help but for some reason he thinks ketamine could help. I've read it's used in pediatrics as well. This week I am getting fosfenitoin infusion in office. Maybe those are two others to mention- wish I could say if they have worked for me yet!

ALittleLoopy said:

we have Kaiser (an HMO) insurance, but will be looking for another pediatric neurologist.

Kaiser has a headache center in Southern California, did they offer to send your daughter to that center?

Martin

Thank you everyone for your kindness and ideas. Sorry for the horrible spelling in my first post, but I was exhausted from the hospital. Our update is that my daughter has not stopped vomiting, and can keep nothing down, so it's back to the ER, and the doctor says it looks like a 50/50 chance for re-admitting her.

I think that she is vomiting from the extreme pain, which they have given up trying to treat. Anymore ideas for pain meds that are "safe" for use in pediatrics would be a godsend. (Although, yes, she's 15 and has an adult size body). I believe that I mentioned that her opening LP pressure was 23, and they lowered it to 11. I am so afraid that she now has a post LP headache along with her migraine. I will be asking the doc about the ideas posted, as they are clueless how to help her pain. I REALLY appreciate everyone on this board, and will be checking on my iphone later today. Thank you, and I hope that everyone here has a pain free day... and even week!

I am so sorry to hear what your family is going through. How long has it been since pain meds? For some, pain meds can give them nausea/vomiting (especially if nauseous before them). But yes, it could also be the pain. I say meds first as her headache did not present with nausea. If the pain meds aren't helping, I'd recommend pushing nausea meds only for awhile. Some people's headaches just don't respond to narcotics. Has a triptan been tried since the first day?

Some other ideas are a course of antibiotics or steroids, but those take a week so aren't immediate, but are really good to try in the beginning of a headache because as times goes on they have less of a chance of breaking the headache. Another headache breaking combo (that takes some time to trial unfortunately) is Doxicycline or Minocycline (antibiotics) with Singulair (an asthma med). Dr. Rozen found this by accident and many doctors now try this.

The movement of being wheeled around and the car ride probably didn't help. Zofran is good. Some others are Reglan and Phenergen. Reglan has a higher chance of side effects (it makes me kinda paranoid and anxious). I agree to press the doctors to pursue the high opening pressure as that is one of the few things you have to go with right now. Also, the potential of a spinal headache. Those can also cause severe nausea/vomiting. There might not be too much else to try in a hospital setting but they do need to get her stabilized (ie. not vomiting) before sending her home to try preventatives. I assume they have run basic blood panels?

Once she gets home I would pursue home school with her district as I have heard of several in her situation having success keeping up that way. The schoolwork can often be done in a quarter to half the time and she won't have to deal with the stimulation/noise of school. I do recommend to ensure she still has social outlets such as having some friends over though. I would stay hopeful as with her age there is a good chance this will break on its own or the meds will help. The first bit can often be the roughest until the headache settles in and the patient learns to cope, or it goes away. Best wishes.

Here are some IV treatments:

http://www.helpforheadaches.com/articles/iv-meds.htm

Keep in mind that some of these are very difficult to get.

My heart is with you today.

Cheryl

Greent, I hope you can try Ketamine. It is pretty amazing that your neuro is offering it to you.

Cheryl

I have Kaiser as well and live near Sacramento...my new pcp told me that I wa a difficult case.."Like a child who has cancer and is going to die matter what the treatment..We've tried everything for you and nothing has worked"

grr...I'm supposed to see a pain psychologist..then go to their chronic pain program..can't get a ride thoughh...

Maybe this would be an option for your daughter?? Ask them..they won't tell you.

GreenEyes: I also have Kaiser and live in Roseville. I saw a chronic pain pharmD for my very unstable systolic BP, this was at the time the headache were a constant 6-7 (w/dizzy and nausea). She got upset with me, that the systolic BP was not going down and I was questioning her that maybe my chronic daily headache were keeping my BP high. She never tried to treat the headache. I was sent to a chronic pain group, and they discussed Mindful Meditation, Tai Chi, and other managing techniques. I had been doing meditation and Tai Chi for many years. I stopped going to the sessions since sitting upright for long periods of time, makes my headache worse.

The Chronic Pain lady, then sent me to a psychologist for being an uncooperative patient. After talking to me, he asked why was I there? I explained to him the circumstances, and he said many times doctors get upset when they can not help a patient. My PCP also got upset with me, so I left her and got a new PCP.

My Kaiser neuro tried three meds that did not do me any good. About a year ago, he gave Baclofen, a muscle relaxant, after I told him, I was getting a lot of pillow headaches; waking up from a deep sleep with a very bad headache. That helps, some. He also gave Epridrin for my abortive, that works well for me, the first day it dulls the headache, the second day the headache is down to a 1-2 level.

Since then, I have gone to Physical Therapy, Acupuncture, trigger point massage therapy, and I am now trying Bowen therapy; all on my own dime. Chiros were no help. The trigger pain massage helped quite a bit, my headaches are now in the 1-3 range, with a few 7s; once in a great while. Acupuncture is no longer helping me: only one of the six acupuncturists that I tried helped me. I am hoping that Bowen Therapy will help a little bit more, by keeping me in the 1-2 levels for longer periods of time.

Sorry for the long posting, but I hope that some part of my experiences will help in your search for some headache relief.


Martin

You live in Roseville..really? I live in Cameron Park..wow..

We need to talk...my neuro is out of Roseville.. Kaiser always tells everyone to talk to a psychologist..they didn't like it when I said..I wouldn't use their service..I told them if I want to go..I want a Christian one...

At Kaiser I have tried: Botox, accupuncture, biofeedback, anti-seizure.... antidepressants...calcium channel blockers...the list goes on and one with all the different meds.

On my own have read numerous books,,gotten massage ..visited the chiropractor...the list realyy goes on..blah, blah..

Wow, I'm so sorry you have had such a horrible experience with the chronic pain group. I'm 44 and have had migraines since I was 5, so its been a long road for me too. I have a seven page spreadsheet with all of the meds I've tried, notes if they worked, and what side effects I experienced. I was told at one point that they had tried all of the meds out there, and that I would just have to get used to it and learn to tune it out. Many of us can do that up to a point. At about a 7 or 8 I'm down in bed with meds. After that doctor told me that, I called Patient Assistance, and they worked with me to find another Neuro. I absolutely love him!!! Have been with him for about 14 years now. I get Botox shots every 3-4 months, and am on Celexa as a preventative. I actually had a good experience with the chronic pain group, but that was 14-15 years ago, so I guess they have changed their program. They used to have a Doctor of Pharmacology work with you, and tailor your pain meds, and THEN after that they would supplement your program with classes to help teach alternative pain management methods. I was lucky that I was able to be referred to a Bio-feedback program, where I learned how to use my mind and breathing to control some of my pain. It helps, but doesn't take the place of meds when I'm up at an 8.

For those who have been so kind with your words an support which have helped me while my daughter has been fighting her intractable migraine, I wanted to post an update. She left the hospital actively vomiting Saturday, spent the night at home (mostly in the bathroom vomiting) and Sunday morning asked me if she could go back to the hospital. I called the ward, and was able to talk to the Pediatrician on duty, and he told me to bring her to the ER, and he would alert them we were coming. We got to the ER and they imediately gave her a bed and the Pediatrician came down to exam her. A quick look, and he said he was going to get her a bed in the Pediatric ward right away. She was severely dehydrated, so they gave fluids, and IV nausea meds.

The good news was that her Pedi Neuro was back Monday and was REALLY pissed about how my daughter was treated. She took charge and really started working to get her help with the nausea and pain. My daughter had a blood patch done for the LP headache (the thought was that they may have nicked a spot in the spinal column or that the needle site from the LP was causing spinal fluid leakage. The patch was a success and now her back doesn't hurt, and her pain is back down to an 8 from a 10. She even showered today and is able to sit up in bed and watch a little TV without it increasing the pain. Her Pedi Neuro agreed with me that my daughter will NOT be released until her pain is at least a 5 (or lower) and she has been able to eat, drink and take meds orally for 24 hours. YAY!!! It does look like she may have had her migraine caused from the high Spinal Fluid Pressure, so fixing it will hopefully allow her to heal and get better, and respond to meds.

Thanks again for everyone's kindness. I really needed it. It's bad enough dealing with our own migraines, but having to watch our children go through it is so much worse.

I haven't started the chronic pain program yet..I was supposed to meet the pain psychologit today..so I don't know. I'm sure it will be great once I am seen.

Hello, I was also a member years ago...
I had Kaiser in the Central Valley and after a little over a year was able to get them to okay me to the headache center at Stanford. However, my employer switched carriers prior to my appointment. But this is a possibility.

I have been seeing the Dr at UCSF for over 6 years now and have to report that he really knows Migraines. I have the somewhat dubious honor of being one of his worst patients... I have tried over a hundred medications and all the Psych, acupressure/puncture, Chiro...
Dr. Raskin at UCSF will look at any referrals, even if your coverage is not going to cover your visits you might consider it anyway.

I will not be covered as of Jan 1, but I will stay with him as he is the only one of all ( All, meaning 20 odd local, 100 miles ) Neurologists to make significant progress.

Dr Raskin has a reputation as having a poor bedside manor. I find him to be very focused, vastly knowedgable and no nonsense. Basically I don't waste his time and he won't waste mine. Just be prepared for a fast paced intense visit. I have visited him almost 20 times now, even though I am now disabled he never gives up, neither will I.

I used to live in Concord, Born in Walnut Creek, lived there until I was in my 30's, so I know the Kaiser and other facilities quite well, there are some exceptional Dr.s in the area, but you need to see the specialist.

I hope that you and your Daughter find relief , and are able to get to a specialist soon.

Try to contact a patient advocate if possible. And, never go to the specialist alone, there are times I visited the Dr. and don't remember anything...
All the best to you,
=Bill

I was seen by Dr. Raskin at UCSF..Kaiser refered my there..my neurologist didn't like what he had to say...

It's amazing..we live in such a small world.

I lived in Concord and Walnut Creek..when I was a child..

I have two sons..

My oldest son has migraines..younger one headaches so far..I pray that they don't get them like I do.

I really like Dr.Raskin..he listened really well..and I thought he was friendly..just down to business.

Greeneyes, some reviews on Dr Raskin:

http://www.yelp.com/biz/ucsf-general-neurology-san-francisco-2

Martin

It really is amazing how small this world gets online!

My oldest Son just has headaches, my youngest has Migraines. I am hoping my Grand Daughters won't, they are getting to the age...

My younger Sister has had them all her Adult life, but is just now getting to the point that it is effecting her work.

It does run in the family, we just hope that it stops somewhere!

Good to hear your girl is getting help. Hope all goes well.

Happy that your daughter is being treated well now. I'm glad that she has a doctor who won't release her until she' s a 5 on the pain scale..Hope that she feels better soon

Your post broke my heart.

My 26 year old daughter just developed migraine about 6 months ago and so far DHE has helped her.

She isn't having them too frequently (about 2 a month) so I am thankful for that but praying that they don't get worse.

I didn't get severe ones til I was about 30.

The way your daughter was treated by the hospital was just terrible.

I am so glad that her pediatrician took control and is doing her best to help.

Wish I could think of some suggestions for you but I am one of those cases that has tried just about everything and not much works for me except bedrest and opiates when the pain level gets too high.

I totally understand your daughter's poker face. I think most of us that deal with pain on a regular basis get that way.

You would think that doctors would understand that as well.

Sure wish I could be more help to you but I sure will keep you both in my prayers.

Keep us updated.

Cindy