Question:

Did I get that right, "worse with sound?"  I have acute sensitivities to noise in my environment as well, and have suffered from CDH’s for a number of years. What kind of noise bother her?  Does she have sleep disturbances?  Is she anxious/nervous? The biggest thing for me has been Seroquel.  This is an atypical anti-psychotic, but I been taking it for anxiety, sensory integration, CDH, and (apparently) sleep.  My headaches have basically melted away and my sleep pattern has been near perfect for the first time in my life. I also take a beta-blocker (propanalol) on a PRN (as needed) basis when I have a hint of a headache starting.  Beta-blockers are usually perscribed as a preventative, but they have some very unhealthy side effects. I can also recommend some ideas/supplements: * sleep with ear plugs – it will give her nervous system a rest. * Magnesium supplements  (I’m at 400mg 2 times/day, but I’m 200+ lbs). * B Complex vitamin (in particular B2 and B12) * low carb diet – no sugar (soft drinks, candy, etc.) and reduce white foods like bread, potatoes, and rice. I’d recommend talking to your doctor.  Everybody is different, but it’s definitely been worth the effort/expense for me. Erik – Hide quoted text — Show quoted text – My Texas daughter is 16 and has had chronic daily headaches that get worse with sound for the past couple years.  Thought it was sinus-based, but after necessary sinus surgery, they didn’t go away, although she hasn’t had a sinus infection since.  They’ve been determined to not be hormonal, and we’ve done CTs, and a couple other radiology things, as well as the myriad of medications.  Can’t do an MRI as she also has a pacemaker and that would probably cause more problems than she has already.  Seeing a great pediatric neurologist in Dallas and even he is saying she’s one of his more difficult cases.  The worst part of all this, besides the pain,is the grief the schools are giving us. She’s been homebound since May 2001.  Any advice? Already did Botox, acupuncture, anti-epileptics, DHE, diurectics, NSAIDs … Thanks.

Response:

My Texas daughter is 16 and has had chronic daily headaches that get worse with sound for the past couple years.  Thought it was sinus-based, but after necessary sinus surgery, they didn’t go away, although she hasn’t had a sinus infection since.  They’ve been determined to not be hormonal, and we’ve done CTs, and a couple other radiology things, as well as the myriad of medications.  Can’t do an MRI as she also has a pacemaker and that would probably cause more problems than she has already.  Seeing a great pediatric neurologist in Dallas and even he is saying she’s one of his more difficult cases.  The worst part of all this, besides the pain,is the grief the schools are giving us. She’s been homebound since May 2001.  Any advice? Already did Botox, acupuncture, anti-epileptics, DHE, diurectics, NSAIDs … Thanks.

Response:

Hi, I responded via email because I asked some questions that I didn’t want to do on here. Michelle

– Hide quoted text — Show quoted text – My Texas daughter is 16 and has had chronic daily headaches that get worse with sound for the past couple years.  Thought it was sinus-based, but after necessary sinus surgery, they didn’t go away, although she hasn’t had a sinus infection since.  They’ve been determined to not be hormonal, and we’ve done CTs, and a couple other radiology things, as well as the myriad of medications.  Can’t do an MRI as she also has a pacemaker and that would probably cause more problems than she has already.  Seeing a great pediatric neurologist in Dallas and even he is saying she’s one of his more difficult cases.  The worst part of all this, besides the pain,is the grief the schools are giving us. She’s been homebound since May 2001.  Any advice? Already did Botox, acupuncture, anti-epileptics, DHE, diurectics, NSAIDs … Thanks.

Response:

Erik – thanks for the information.  Glad to hear you’re better. Yes, you read the "worse with sound" correct.  Sleep is fortunately not a problem for her and is one of the calmer/non-nervous people I’ve seen.  We tried the Magnesium and B12 a few months ago – no side effects, but didn’t change anything either.  Have to be careful with the heart things with her. Will check on the other meds mentioned next time we see the ped neuro. Harriet – Hide quoted text — Show quoted text – Did I get that right, "worse with sound?"  I have acute sensitivities to noise in my environment as well, and have suffered from CDH’s for a number of years. What kind of noise bother her?  Does she have sleep disturbances?  Is she anxious/nervous? The biggest thing for me has been Seroquel.  This is an atypical anti-psychotic, but I been taking it for anxiety, sensory integration, CDH, and (apparently) sleep.  My headaches have basically melted away and my sleep pattern has been near perfect for the first time in my life. I also take a beta-blocker (propanalol) on a PRN (as needed) basis when I have a hint of a headache starting.  Beta-blockers are usually perscribed as a preventative, but they have some very unhealthy side effects. I can also recommend some ideas/supplements: * sleep with ear plugs – it will give her nervous system a rest. * Magnesium supplements  (I’m at 400mg 2 times/day, but I’m 200+ lbs). * B Complex vitamin (in particular B2 and B12) * low carb diet – no sugar (soft drinks, candy, etc.) and reduce white foods like bread, potatoes, and rice. I’d recommend talking to your doctor.  Everybody is different, but it’s definitely been worth the effort/expense for me. Erik

Response:

- Hide quoted text — Show quoted text – My Texas daughter is 16 and has had chronic daily headaches that get worse with sound for the past couple years.  Thought it was sinus-based, but after necessary sinus surgery, they didn’t go away, although she hasn’t had a sinus infection since.  They’ve been determined to not be hormonal, and we’ve done CTs, and a couple other radiology things, as well as the myriad of medications.  Can’t do an MRI as she also has a pacemaker and that would probably cause more problems than she has already.  Seeing a great pediatric neurologist in Dallas and even he is saying she’s one of his more difficult cases. The worst part of all this, besides the pain,is the grief the schools are giving us. She’s been homebound since May 2001.  Any advice? Already did Botox, acupuncture, anti-epileptics, DHE, diurectics, NSAIDs … Thanks.

Have you considered the possibility that she might be clenching or grinding her teeth, especially when she’s asleep?  That’s a common headache trigger, and it can mimic sinus headache symptoms, causing pain around the cheekbones as well as irritating nerves that bring on the classic migraine symptoms.  You might want to talk to her dentist about an NTI.  It helps me somewhat, and has helped others a great deal.  Details are at www.nti-tss.com.  Tooth clenching leaves distinctive marks on the teeth, that will be obvious to the dentist if she does it a lot.

Response:

I would ask God for help. It sounds like a real puzzling problem. My heart goes out to you and your daughter. It’s so hard to watch or kids suffer. The Lord bless you and your daughter. Katie .

Response:

Welcome, hws. So sorry to hear about your daughter. I concur with kadee that a headache clinic might be helpful – at least they’re extremely interested in the problem. Just curious, does anything at all help her? Do you think they’re migraines? Are there migraines in the family? Does she respond to any of the triptans (Imitrex and sons)? Good luck –Julianne

Response:

Katie, that’s typically where I go even when I’m dying with pain.  Somehow knowing who cares the most for me will give me strength to endure. Michelle

– Hide quoted text — Show quoted text – I would ask God for help. It sounds like a real puzzling problem. My heart goes out to you and your daughter. It’s so hard to watch or kids suffer. The Lord bless you and your daughter. Katie .

Response:

Hi, hws, it’s tough to figure out migraines when you yourself have them, but even harder when it’s a child who’d plagued with them. The headaches sound like migraines to me, and for all intents and purposes, you might think of them that way. Migraine is a condition unto itself, a recognized disease or syndrome, that’s the result of certain individualized triggers that cause a "touchy" brain to react with expanding blood vessels that create pain. What happens inbetween is a partly understood mix of brain chemistry, nerves, areas in the brain and central nervous system all jumping in together, and making their owner fairly miserable. The drugs and treatments are aimed at preventing the sensitivity in the brain, irritation in nerves, the imbalance in the brain chemistry, keeping the blood vessels on an even keel, dampening reactions to allergenic "things", short-circuiting the whole mess once it’s gotten started, and/or making the person more comfortable with pain relievers and other drugs and methods. I may have forgotten a thing or two, but you already know that migraines or headaches aren’t simple any more. First, someone already suggested an NTI mouthpiece. Excellent idea, and it will not interfere with any other treatment she’s on. The jaw muscle can be so tensed, awake or asleep, that it irritates the trigeminal nerve, the major one that controls the whole face. That could account for sinus pain (makes my sinuses run and my eye sockets ache), and an astounding number of other problems. Here’s an example: clench your jaws hard, and feel how tight the muscles in your cheeks feel. Then put a pencil – like a cigarette – between your top and bottom front teeth, and try to clench again. Can’t do it. That’s how the NTI works. It’s an FDA-recognized migraine treatment, and covered by most medical insurance. The NTI website has a dentist locator. Takes usually only one visit. Please read the sympton information on the NTI website. You may see yourselves here! You say she sleeps well. Are you certain she doesn’t have any form of sleep apnea? Has she been tested? That’s a likely cause of daily headache and migraine. If she’s not breathing properly during sleep, her blood oxygen could drop, and the brain reacts to low oxygen by saying Ouch! Happens to me a lot. You mentioned DHE already, and someone else has suggested the triptans to you. With her heart issues, the next step down from DHE would be Midrin; has she tried that? I’m attaching a list of migraine preventives that one of the generous MDs on this group put together. Maybe there are some ideas there for you to discuss with her neurologist. You’ve tried magnesium and B12, but there’s better research supporting B*2*, and good studies supporting Co-Q-10. Take a good look at sections I, III, and IV for non-drug preventives. There are a few things not on that list that some people get relief with, as preventives; muscle relaxants like Flexeril, Skelaxin, and Zanaflex. And a few of us are getting some help with the antihistamine Zyrtec, which may mean we have a particular problem with histamine as a trigger; might not be effective for everyone. And one other idea. If after everything, she still has migraines, and nothing really works to stop them, consider a very low dose continuous narcotic pill or patch. Because of my difficulty with preventives not working, and my miserable chronic daily headaches/migraines/whatevers, my pain specialist put me on the Duragesic 25 patch, an around-the-clock low dose pain killer, whih has reduced the daily headaches to every few days, and cut down the intensity and frequency of the nasty migraines, tension headaches; and has also taken my back problem pain down several notches. She’s old enough to be suffering, so she’s old enough to consider serious, low dose pain medication. It could be what lets her return to school, and get a lot of her life back, if there’s no other way to treat her migraines. Please stay with us on the newsgroup, and tell us how she does.  :D Ginnie   Organization:  MindSpring Enterprises    Newsgroups:   alt.support.headaches.migraine  Migraine Prophylaxis We frequently hear from people who feel they have tried everything for their migraines.  Sometimes that isn’t quite true.  This list is intended as a crosscheck of possibilities for discussion with your doctor. A number of things may help prevent migraine.  One of the most successful is a device, not a pill.  Some are prescription drugs, a few are over-the-counter (OTC) medicines or nutrition supplements.  None of them completely end migraines; you hope for a significant reduction in the frequency and/or severity.  Migraine prevention is an approved indication for only a few of them.  This list includes as many beta adrenergic blockers and calcium channel blockers as I could easily identify, even though some members of each class may be poor choices within their class.  The list includes possibilities with little or no further comment and no evaluation. This list needs work.  Perhaps continuing feedback from the group at alt.support.headaches.migraine (ASHM) would help. For another source, try:   http://www.headachedrugs.com   The site is set up by Lawrence Robbins M.D.  Dr. Robbins and Susan Lang are authors of "Headache Help," Houghton Mifflin Co; ISBN: 0618044361.  2000. Teri Robert maintains http://headaches.about.com/ including more detail at http://headaches.about.com/bl-all-meds.htm In-depth discussions may also be found in the FAQ (frequently asked questions) page for alt.support.headaches.migraine at http://www.meldrum.demon.co.uk/migraine/ I. Non-prescription prophylactics  A. Magnesium, up to 750 mg twice a day.  Allow at least three weeks to begin to see an effect.  Smaller amounts of calcium supplements may be needed to maintain a proper balance.  (Mg has the advantage of being exceptionally safe.)  B. Co enzyme Q10.  Used in fairly high doses (100 mg per day has been shown effective and some patients tolerate as much as 600 mg/day), this is said to provide very good relief-better than many of the older prescription prophylactics with few side effects.  Gastrointestinal upset may occur at high doses and limit dose.  Allow up to 12 weeks for effect.  In Drs. Young and Silberstein’s "Coenzyme Q10 as a Migraine Preventive, a recent trial of coenzyme Q10," 61.3% of the patients treated had a greater than 50% reduction in number of days with Migraine. Fewer than 1% reported any side effects. Read it at: http://headaches.about.com/library/weekly/aa-coenzymeq10.htm   C. Vitamin B2 (riboflavin) 400 mg/day.  Readers advise that B2 is not a commonly available supplement; it

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