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AnnieT	Jan-30-06, 03:41 PM (CMT)
"CDH"
My eleven year old daughter woke with a headache in October, and it has continued on a regular basis ever since. Because this was such a sudden onset, her pediatrician order an MRI plus blood work, all which came back normal. The referring Neurologist said that she is experienceing a tension type of headache and put her on 20mg of elevil the end of December. The headaches are not going away, and she continues to suffer. They range from a 3-8 (1-10 scale) and are located on both sides of her head above her eyes. She indicates that it is a severe throbbing type of pain. We have worked with a hypnotherapist on relaxation techniques, and are seeing her dentist today to pick up a night-guard in case this is caused from teeth grinding. We are also scheduled to see a chiopractor tomorrow. Her Neurologist is open to alternative treatment, but like so many of you have said this is a long road to travel. I must admit, up until now, I had no idea how much people suffer from these horible things. I hope and pray that a new type of drug or treatment will arrive on the market, so that you all will have a chance to live without pain. Until then, can anybody tell me if we are on the right path, or is there some other approaches we should be taking? Thank you, Annie
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RE: CDH, agospero, Jan-30-06, (1) RE: CDH, joannehg, Feb-02-06, (2) RE: CDH, christina's mom, Feb-06-06, (3) help, mandy11, Feb-07-06, (4) RE: CDH, sweeet-gorgeous-sarah, May-05-07, (5) CDH, Jeff, May-13-07, (6)

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Messages in this topic

agospero	Jan-30-06, 06:13 PM (CMT)
1. "RE: CDH"
I'm 14 and I've had migraines since I was about 5, though my mom believes I've had them since I was a baby. I've had my current migraine for over 2 years. I was homeschooled for 3 years on and off and I've been on more medications then I can count. I've also tried all the alternative medicines. Though I know meds can help I urge to you be careful as to what is given to your daughter. I've ended up in the ER more then once because the meds I was on were to much for me to handle. Also, meds can cause you to get worse eventually. I would recommend finding a Nutritionist the specializes in Disease Reversal. I've changed my diet completly and after getting worse I'm finally a lot better. Because meds can stay in your system for years I went through a very horrible withdrawal period. I am also now med free. If you want to try meds just be sure to read side effects and make sure the dosage isn't to high. Also, be sure to find out if migraines are the only problem. For me they weren't. I also suffer from fibromyalgia which causes pain throughout the body and also causes migraines. There a whole lot of things that can cause migraines besides Neurological reasons. Be sure to check them all out and don't let doctors tell your what she is feeling or not listen to her. She is the only person who knows what is going on. Ciropractory has also been a life saver. Migraines can be tough, I really hope your daughter gets through this quickly. Migraines for a long period of time can be very draining. Hope this helps. If you have any questions just ask.
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joannehg	Feb-02-06, 08:13 AM (CMT)
2. "RE: CDH"
I am sorry your daughter is suffering so much. Mine is 15 and has had a headache since September 28th. The best advice I can give you is to really listen closley to your child. Support her, because this can be a lonely road for someone so young. Also be a strong advocate. It is very hard for me to put my foot down with doctors, but sometimes they just don't get the message. Yesterday I had to be very persistant and go through patient relations to get ahold of her neurologist. We have tried some of the holistic approach, but I can't force my daughter to take herbs that taste weird, because nausea is a huge problem. And she didn't feel like she could feel well only on fruits and vegis. So we modified her diet to contain only freshly cooked stuff, being careful for additives or preservatives. It was a compromise between the holistic and the medical. Because some of what the holistic people say is true. And the same for the medical. But the hard part to accept is that no one has the supreme answer. It is trial and error with both meds and diet. Hang in there and love your child. You are her best medicine! Joanne
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christina's mom	Feb-06-06, 07:54 AM (CMT)
3. "RE: CDH"
I noticed your posting was in October, is your daughter doing better? Do you know what broke the cycle and got her relief? My 10 year old daughter hit her head skiing (had a helmet on), had a mild concussion and whiplash 4 1/2 weeks ago, and has had a headache since. MRI, CAT scan, all blood work is normal. Have had her to a chiropractor, accupressure massage, vitamins. She is taking amitriptyline to break the cycle and has tried imitrex, furicet, advil and tylenol, but nothing touches the pain. This is her first bout with Migraines. She had 3/4 of a day yesterday with no pain, the first in weeks, but by 9pm her headache was a 9 (1-10) and it is still that way this morning. She has missed 3 1/2 weeks of school. It is horrible to watch her suffer so.
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mandy11	Feb-07-06, 11:13 PM (CMT)
4. "help"
hi, im 18 and have had CDH for four years. the best medications i've taken (and this is four years of medication) have been neurotin and topamax. the advice i'd give you and your daughter is to stick with what you get, try to learn from medications, grow a strong friendship with the people that care about you (ive had lots of problems with being excluded from groups of friends), and never back down. I've had problems with school and i still don't know if i can graduate because of absences. i would recommend homeschooling right away, because i know how it is to have an illness that is so hard to cope with all of the time. stay strong!
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sweeet-gorgeous-sarah	May-05-07, 01:12 AM (CMT)
5. "RE: CDH"
hey, well I am 15 going on 16 and I have dealt with daily migraines for 4 years now. I was hospitalized for seven days and it actually worked. For the most part anyway. But the medication I am on causes fibrosis of all my major organs so I have to take a month off of all the medications for two months out of the year (so that’s every 6 months) and that month is going to be hell, because even when I am late on my medication I have an instant migraine. So I am not looking forward to that. I’ve been forced to drop out of school because I can’t keep up with work but I am hoping to get back next year. I am keeping my fingers crossed. I have also lost all of my friends due to the migraines because they don’t understand how a migraine can make you not be able to get out of bed in the morning and just do basic day to day things that we all have to do. Most of them think that I am doing it for attention or they think I am weird. But this hospital I went to in Ann Arbor Michigan was great. People come there from all over the world and even from different countries. It’s Called Michigan Head Pain And Neurological Institute. The hospital you stay at is Chelsea Hospital which is also in Michigan. They have there own Migraine wing and your surrounded by many doctors that suffer from migraines and the other people that are there totally know what your going threw. And there’s a hotel right next to the wing that u can see out of the windows where your parents can stay for next to nothing if your in there for migraines. It was a very positive place. I also learned so much there that I would have ever known. Before this place I found no relief and got addicted to Vic Odin because I needed something for the pain. Here is the address you should definitely check it out it can change your life. 3120 Professional Drive Ann Arbor, MI 48104 There phone number is 734-677-6000
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Jeff	May-13-07, 10:02 PM (CMT)
6. "CDH"
Hi, I"m so sorry to hear about your daugther. I have CDH tension-type and further classified as new onset daily persistent headache. It started when I was 19 and I am now almost 28. First I would highly doubt that a chiropractor will help your daughter. The Mayo Clinic has stated that chiropractic care does not help CDH and there is also a chance it can make headaches worse by causing arterial bleeding. My doctor Dr. Robbins has told me that he does not recomend his patients to see chiropractors and when they do go they do not get good results. The one thing I would recomend is biofeedback training. It is safe and once learned can be done anywhere quickly and efficiently. Studies have shown that 70% of headache patients will show some improvements with biofeedback training. It is similar to meditation or progressive muslce relaxation. The biofeedback machine gives you accurate date on how much muscle tension is in your muslces and then you can learn to release it quickly. The therapists can also help with breathing and thermal hand warming which are all part of the same relaxation respons which helps people reduce pain. It will take a commitment on the part of your daughter to do this well but the benefits may very well be with it. You can help her out with this as well by encouraging her and possibly setting up time to read a relaxtion script for her. After she has been on a drug for a month withoug seeing results a new drug should be used, and often times much less than a month. There are at least 50 commonly used medications for CDH so there is not point sticking to a drug that does not work. Yoga and/or an exercise program may help your daughter reduce some of the pain she is in. It also may help her cope with stress better in general. YOu may want to try a headache diet or two just to rule out food triggers. Caffeine can sometimes reduce headache pain as well as many prescription drugs. Talk to your doctor about this. Was she taking pain medication for any reason when the headaches started? I would recomend finding a headache specialist unless you are very confident in your neurologist. You may want to have her have a special MRI to check cerebral spinal fluid pressure. A leak can mimick CDH symptoms. This can be corrected through surgery but is very rare. Also, I think a psychologist or counselor may be able to help your daughter cope better despite the pain. It certainly doesn't hurt to have her talk to a professional in this area if you can afford it. Finally, make sure she is getting the appropriate accomodations at school. She is eligible for a 504 plan. Several steps should be taken to ensure she can still succeed at school. Take Care, Jeff Keep trying the medicines and d
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