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

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

Hi,
this is aweful about your daughter I really feel you all, I might have missed something in your post ,but did you try the yeast free diet for your daughter as I have heard that yeast , candida is big cause for migraines.
just a thought , my thoughts are with you and your daughter x

I read your initial post, but am not feeling well enough to read both pages of responses. Please forgive me if I go over something that was already discussed.

First off, welcome to the forum. This place is my saving grace and has been for years. It's a great place to come for new ideas, or support and a sympathetic ear.

Has your daughter been placed on any type of preventive medications? Many people have results with things like beta blockers (propranolol) or some anti=depressants (like amitriptyline) or anti-seizure medications (like Topamax). Personally, I'm using the propranolol and amitrypline combo right now. I can't say it's worked wonders, but I think I'm better with them than without. Many of us who frequent this board are very "difficult cases" that don't represent the best possible outcome.

Don't necessarily give up on all triptains because Imitrex didn't work for her. Personally, I find that most oral medications don't work well for me. My stomach goes into stasis during a migraine and they don't dissolve. I find that while the Imitrex tablets and nasal spray don't help me at all, the Imitrex injections work pretty well. My doctor also gave me Nalbuphine (pain medication) injections to use because he doesn't want me using the Imitrex more than two days a week. Fortunately, he trusts me enough to give me pain meds, and he's a cluster headache sufferer so he knows how I feel.

Your daughter is very fortunate to have you in her corner trying to find answers. Sometimes just knowing that there is someone out there who cares can make the world of difference. I truly hope that your daughter finds something that helps and her pain breaks soon. Someone that age (or any age really) shouldn't have to deal with such severe constant pain.

I moved back to Sacramento in November of 2003 and started having random health problems. I eventually was on 3 medications for asthma, a daily med for migraines (none of the rescue meds worked), a pain med for when I got a migraine despite the daily med... O and a rescue inhaler. I hate taking a daily prescription, I am currently 30 and I don't think I should have to be on anything! Anyway, I moved to CO in Nov 2006. My migraines stopped almost completely (although I'm laying in bed fighting one right now) and I have no breathing problems. I am a fourth generation Sacramento native and my theory is that my body can't compensate for the conditions in the valley. I had my one and only asthma attack while living in truckee, all the air from the valley gets blown up the Sierras and sits in truckee.

A little loopy I'm so sorry about your daughter! Have you thought about moving to the high desert? It did wonders for me... I live in western Colorado, we get a little snow but 300 days of sunshine a year. Something to look into maybe?

The migraines I get here, don't last days, and they go away if I go to bed. I am very lucky at this time! I have been considering going back on my daily migraine med but they have not reached a point I can't bear, yet.

Please keep us posted on your daughter's progress!
Adasa