Heart Broken over Daughter

Discussion in 'The Watercooler' started by Josie, Oct 7, 2009.

  1. Josie

    Josie Active Member

    difficult child 2 has had a disabling headache for 2 years. She has been unable to go to school or have a social life.

    Last Saturday, the pain was so bad that she asked to go to the ER. I took her and they tried a migraine abortive treatment that didn't work, so they admitted her.

    She stayed for 3 days and tried another treatment that made her headaches even worse. They suggested changing her headache preventive medications but had nothing else to offer. They did a Lumbar Puncture and a 24 EEG as well as blood tests and could find nothing wrong.

    Since they changed her medications, she was extremely anxious when we got home. She feels like she is in a dream and that she might hurt herself. I think she meant accidently in an impulsive act rather than intentionally. We changed her back to her old medications for now until we can consult with her psychiatrist.

    She has taken Fiorcet, Tramadol, and Imitrex with no relief. The pain was so bad tonight that she was thrashing around on the floor crying.

    She is being treated for Lyme Disease and her medicine seemed to be making her head worse. This is actually a common thing in Lyme Disease and is supposed to mean the medicine is working. It is supposed to get better in a few days if the medicine is stopped. After we stopped it, she got even worse every day.

    There seems to be no relief in sight for her.
  2. Lothlorien

    Lothlorien Active Member Staff Member

    Is is sudden onset? Have they done an MRI of her brain? Does any pain medications work? I know someone who has a dibiitating issue with spinal fluid/body pressure. It has something to do with breaches in his dura of his spine. Pain medications, including high doses of morphine did not help him. Just curious if any of this is similar to his condition.
  3. Josie

    Josie Active Member

    She has had headaches for about 5 years but they got worse 2 years ago.

    We haven't found a pain medication yet that works. I just asked her doctor if there was anything else we could use. I haven't heard back yet.

    She just had a spinal tap with opening pressure checked and that was ok.

    She has had 2 MRI's. The most recent one was about 18 months ago. They did not feel the need to repeat it when she was in the hospital.
  4. Hound dog

    Hound dog Nana's are Beautiful

    I'm so sorry for your daughter. I can't imagine.........well, ok I can imagine and it really makes me cringe with empathy for her. I think I'd be pushing for that new MRI. It doesn't hurt to make certain something else isn't causing the severe headaches. It would be awful to have something missed because they shrug it off as being same old issues that she's been dealing with.

    I hope she can find some relief soon. I don't deal with any type of head pain well. My heart goes out to her.

  5. gcvmom

    gcvmom Here we go again!

    I'm so sorry she is suffering! I can relate a little to your sense of helplessness... my husband had horrible, horrible rebound pain post op after a craniotomy. He became suicidal the night I first brought him home because it was so bad, so we drove 50 miles back to the hospital where he was discharged for another three-day stay to get the pain under control. It was one of the worst things I've had to watch someone go through.

    I hope she gets relief soon.
  6. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Did she get worse right after the spinal tap? If so, they may want to do another to do a blood patch. I dont know if it is too late for that though.

    Gosh this poor child.
  7. susiestar

    susiestar Roll With It

    I am so sorry. I have struggled with migraines since age 4 and have 2 kids that also have them. There are times I just want to die. I refuse to have the guns my grandfather left to me in my home. If I had easy access to a gun I would end up using it in the middle of a headache. I NEVER want my family to go through that.

    in my opinion it is worse to watch your child hurt like this than to hurt that way yourself.

    Do you have a Children's Hospital that you can take her to? Are the docs treating her pediatric neurologists and other pediatric docs? Often teens, esp girls, have trouble with medical treatments because they LOOK like adults and docs can forget that they are different than adults. Some tests must be done differently with children than with adults. Esp EEGs and EKGs.

    Has this one headache lasted for 2 years, or have the headaches just been more severe and longer in duration than in the past?

    If it is a 2 year headache then she NEEDS a complete new workup to recheck everything. You may want to check out what the Children's Hospital can offer, and also what some of the major headache clinics can offer. I know several people who have traveled to Cleveland, OH to be evaluated at the Cleveland Clinic (http://my.clevelandclinic.org/default.aspx) and had great results.

    I can certainly empathize with both you and your daughter. Not only do I have the headaches, my daughter gets them also. She also has some sort of movement disorder and is in constant pain. It is so hard to watch and not be able to really help.

    You may also want to talk to a therapist, both of you. NOT that depression or anxiety is the cause. They may play a part, but there really IS a cause other than depression or anxiety. It is just that, well, if you are not depressed and anxious after 2 years with a headache then you really ARE crazy. Know what I mean??

    Sending hugs and sympathy. If you have questions, or your daughter wants to connect to someone who has chronic health problems I can let my daughter know. Just let me know via PM.
  8. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Oh Hope, I know you must feel so helpless. Poor difficult child.

  9. Josie

    Josie Active Member

    It is a 2 year headache without any break. There are times when it is worse than others, but it hasn't been this bad since the beginning.

    It was the Children's Hospital here. There was a pediatric neurologist and lots of other doctors since it is a teaching hospital.

    There is a headache clinic 200 miles away that has said they will take her as a patient. They have a list of abortive IV treatments for headaches. I am most interested in their use of propofol at low doses. They claim a 97.5 % success rate in stopping headaches, not just migraines. She has already had a few of their treatments or taken the medication orally.

    We have a therapist we have been seeing off and on for 6 years. I just recently went back to her. She has offered to come see my daughter at the house, if necessary.

    They were concerned about depression at the hospital, too. They asked her how many happy days she had. She said "not very many". I asked them to think about when they were sick, if they were happy. At our last meeting with the neurologist, he did say depression caused by illness which then makes the illness worse. Personally, I believe the depression is a tiny part, if any, of the cause of the problem.

    Earlier this year, she drew a picture and wrote "Life is Good" on it. I was so touched that she would write that, because to me, it looked like her life was awful. She was more optimistic then and had happy times throughout the day. Now, it is hard for either one of us to believe that this will end.

    She is depressed. I am depressed. One of the doctors asked me if I had Obsessive Compulsive Disorder (OCD)! Not does anyone else in the family have it. (I am sure that I do not.)

    We did extensive CBT/ERP therapy with my daughter earlier in the year to work on her Obsessive Compulsive Disorder (OCD) to make sure that wasn't what was keeping her in her bed. Even the therapist agreed that he could see a different look on her face when she was feeling worse than when it was her anxiety. When we went out of town to her doctor, we tried to do some sight seeing but built in some rest periods for her. She was out of her bed more then but it was clear at the end of the day that she was in pain and overdoing it. Same thing when we are at home but have company. She tries to be social but you can tell by the look on her face, she doesn't feel well.

    Her headache was already bad when they did the spinal tap. It is hard to know if that actually made it worse or not.

    She says she left the hospital too soon. But there is nothing else they can do. That is so depressing to me.

    I can see why some people end their lives over something like this.
  10. smallworld

    smallworld Moderator

    What medications/doses is she currently taking? How is she sleeping at night?

    Hugs to both of you. I really feel for you.
  11. Josie

    Josie Active Member

    She is taking 1000 mg of Depakote. Her level is 48 per the ER. She is taking this to prevent raging and to hopefully help with the headache. She doesn't rage on this medication. She's been taking it since July.

    She takes 75 mg of Trazodone for sleep. Her psychiatrist said I could give up to 150 mg. Sometimes I give her 100 mg when she has trouble getting to sleep. Once she gets to sleep, she usually either sleeps all night or wakes up and gets back to sleep easily enough.

    She takes 2.5 mg of Lexapro for anxiety, Obsessive Compulsive Disorder (OCD), depression.

    At the hospital, they gave her 50 mg of Elavil instead of the Lexapro and Trazodone. Her anxiety was back even when we got home. And she had a sense of being in a dream. We put her back on the Lexapro and Trazodone to see if that feeling was from the change in medications. She says she still has the dream feeling but her anxiety is under control.

    I think the Elavil might be a good idea because her headaches were controlled for a few years with 10 mg. I am just uncertain about the abrupt change.

    Her psychiatrist, who is also trying to control her headaches, rx'ed pindolol last week, but before I could start it, she ended up in the ER.

    Her old neurologist was worthless (told her to drink water and do yoga when she had been out of school for weeks). We do have a new one out of this hospital stay.
  12. smallworld

    smallworld Moderator

    As you may know, my son has a long history of migraines (from age 4). He took 1000 mg Depakote for mood stabilization, and it did nothing for his migraines. Depakote also severely depressed him. He had to go back on his Propranolol (60 mg) for migraine prevention. While I'm not suggesting discontinuing Depakote if you're satisfied it's helping with rages, it really may not be touching your daughter's headaches. And it could be contributing to depression because it is more effective in treating mania than in treating depression (treats from above better than it treats from below). We ended up switching my son to Lamictal because he was so depressed on Depakote.

    The 50 mg Elavil all at once may have been too much of a shock to her system, but you're right that it could be a good choice if titrated slowly over time. I myself am taking 15 mg Elavil with 50 mg Topamax for migraines, stress, IBS and insomnia, and I'm doing well. I also know I have room to increase if my symptoms get out of control.

    SSRIs like Lexapro can contribute to headaches and insomnia. It happened to me.

    I'm glad you're seeing a new neuro. I hope a fresh set of eyes will offer new treatment and new hope for your daughter. Hugs.
  13. flutterby

    flutterby Fly away!

    I'm so sorry. :(

    I wish I could offer up tons of wisdom, but the truth is it just hurts to watch your child in pain and not be able to do anything about it.

    What does the Lyme doctor say?

    I'll be keeping her and you in my thoughts and I hope she can find relief soon.

  14. Josie

    Josie Active Member

    I'm waiting to hear back from the Lyme doctor. Unfortunately, I think this is part of having Lyme.

    We are continuing to look for an easier answer.

    It was so disappointing that they could do nothing to ease her pain at the hospital.
  15. DDD

    DDD Well-Known Member

    I can't imagine living with pain daily...it must be excruitiating for both of you. I have no experience in this area. Have her ears, eyes and teeth been checked just in case it is triggered by something simple? DDD
  16. jbrain

    jbrain Member

    I am so sorry, it must be so difficult to see your poor dtr in so much pain and having it be so constant. I occasionally suffer from migraines and am able to get them under control pretty quickly--to think of having a severe headache that nothing seems to touch is really scary. Please keep us updated and know I am thinking of you--wish I could do something to help.
  17. susiestar

    susiestar Roll With It

    This is just such a frustrating thing to go through. I HATE docs who want to blame medical issues on depression and/or anxiety. If a male came in with the same symptoms they would RUSH to give him pain medications and get it stopped or at least helped. Since your daughter is female they want to send you to a therapist instead of helping.

    Can you tell we have a bit of the same treatment here with my daughter and myself?

    Stopping the lexapro suddenly is a TERRIBLE idea. Withdrawal is a very big problem and most docs/pharmacists will tell you it doesn't exist. If you google "lexapro withdrawal" you will get a lot of info. To stop it you MUST titrate down slowly. Otherwise it will make everything MUCH worse.

    I can offer a lot of commiseration to you and your daughter. Chronic health problems with no end in sight, especially for our kids, is just too much to handle.
  18. Nomad

    Nomad Guest

    How awful for both you and your daughter.
    Has your daughter seen a neurologist with a special interest in migraine headaches?
    I had to see one to treat my migraines and for me it took Topamax, plus other things. From what I understand, most docs are finding Topamax is one of the better preventatives. For severe situations, it is something to seriously consider using. For me and many others, it takes a variety of things to show improvement and certainly a lot of hard work.
    There is a woman who writes/blogs about headaches and migraines on the web called Terry Roberts. I have spoken with- her in the past. She knows a lot of information and many specialists throughout the country. I personally, have lost touch with her. I am sure if you google her name, you would be able to find her and email her for the name of someone to get a second opinion.
    Sending good thoughts for healing, pain relief and comfort.
    Lasted edited by : Oct 9, 2009
  19. Star*

    Star* call 911........call 911

    Hi Hope.....I've got Hiiiii hopes...

    I am a severe migraine survivor. I have overcome the 2 year migraine with bouts of crippling migraines that left me with over the top blood pressures in stroke range, unable to walk and inability to speak. They are horrible. The MRI's looking for the pituitary tumors are even worse for me.

    I finally saw a good neurologist here in Columbia, SC. To me since I am no longer in pain daily he is a genius. I had to keep a migraine diary very detailed for about 3 months. It listed the weather, barometric pressure, sunny, rain - it listed every single thing I ate, drank and times. It listed medications I took for trying to stave off headaches and of course trips to the ER.

    I took that to him and dropped it off. I have been on every kind of medication, tried every herbal remedy and live for ice packs, dark rooms, silence and the love of a good therapy dog. This is what finally worked for me.

    I can't eat McDonalds ever again. There is something in their beef that makes me instantly have a headache. Most beef will give me a headache. Most commercial beef wholesalers inject their beef with chemicals to enhance the flavors and more than likely it's one of those chemicals that causes my migraines to flare. I hate meat anyway - so win/win.

    I am also a hormonal migraine person and there is a migraine medication out now that is JUST for pre-period times. Starts with an F....can't remember the name. I can't take it - but most women find it tremendously helpful.

    I have had to eliminate caffeine. My body LOVES caffeine and going off of it was heck on earth - hurt worse than the migraines. I have one cup of coffee a day - (a big one) and limit anything like Excederine Migraine pills - they are BAD 4 U. NO NO if you suffer from migraines....you get in a bad habit.

    As far as a daily maintenance - I take Topamax. It's not a cure all and I still have low instances of daily pressure but it's manageable. I also have my lifesaver for when the light Aura starts - RELPAX. Without Relpax? I would be in the ER - at least once a week. It's expensive but Pfizer has a patience assistance program. You can't take Relpax daily - the most you are supposed to take is 6 - some months I take 9 - better than the bill for the ER. They're about $36 a piece.

    I don't know if she's tried any or either of these maintenance programs - or had a migraine diary to take TO a neurologist....but if you get a good neuro - they'll ask her to do this - if you don't get a good neuro? No diary for migraines. See?

    Sending you peaceful times in her head. Also I get a lot of relief packing my head in ice...I love ice packs...my head literally feels like it's on fire so ice is a blessing. If you take RElpax BEFORE you really get in pain it can stop the headache - you (sorry for the info) but pee out the headace. Can't explain it better than that. It must have a diuretic in it.

    Hope maybe this will help.

    Also my son took the Tramadol medicine your Daughter is on and it gave him HORRIBLE headaches. It also made him gain beaucoups weight.

    Hugs =
  20. Josie

    Josie Active Member

    Thanks for the ideas. I will get in touch with Terry Roberts to see if she can recommend someone.

    I have found a headache clinic in Dallas (200 miles away) that does aggressive IV treatment to stop a headache. They have a whole list of different medications they try through the IV. Then they come up with a plan to prevent headaches. Maybe Terry Roberts wil know about it. It is done on an outpatient basis but takes 3 or 4 days in the clinic.