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Teenager with Chronic Headache

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Posted 10/28/2005 10:52 PM (GMT 0)
HELP

My 15 yr old daughter got a headache Sept. 25 and it has not gone away.  She has never had a headache like this.  At first she slept 20 hours a day.  When she stands up the headache slowly gets worse.  She was hospitalized for five days having DHE IV medications for headaches.  The headache got better but did not go away.  She tried to return  to school but the headache did not allow her to concentrate and pain increased.   She has missed three weeks of school. 

We tried chiropractic care twice per day for a week and the headache did not improve.

The neurologist thought trigger point injections might help.

The headache improved slightly but did not go away.

She had a myeologram done this week and it is normal.

HELP!

I have a 15 yr old with a headache that has stopped our lives!

I would appreciate any information and would like to know if anyone else has been through this.

Thank,

Janna

Posted 10/29/2005 12:52 AM (GMT 0)
Hi Janna,
Did your daughter's headache (the one that gets worse when she stands) start after the myelogram? If so she may have a spinal headache (also known as a dural puncture headache). I am a physician and have on very rare occasions given a patient such a headache by performing a spinal tap (it is a known risk of the procedure). It can be more common after a myelogram, however (I myself had a spinal headache after a myelogram). If she does have a spinal headache she may need what is called a blood patch (sounds worse than it is.) They draw some blood out of her arm and inject it into her back in the area of the myelogram to patch the hole in the dura (which is the fibrous covering of the spinal cord -- if there is a hole in the dura the spinal fluid leaks out, especially when you stand up, and you get a headache.) If this is in fact the case (headache worse sitting or standing, better lying down) tell her doctor (or the radiologist who did the myelogram) that she has a spinal headache and an anesthesiologist needs to do a blood patch. That will help at least that aspect of the headache. When a blood patch works, it works fairly quicly (within minutes), so have her sit up and stand up and see if the headache is gone. Hope this helps.
Laura L. MD
Posted 10/29/2005 1:55 PM (GMT 0)
Hi Janna,
Hope your daughter is better. If she is still having a headache that is better lying down and worse sitting or standing you can go to the ER of the hospital where she had the myelogram and they will probably have an anesthesiologist on call who can do a blood patch. Temporizing measures include drinking lots of fluid and (not recommended if your daughter has migraines) lots of caffeine [in the ER the caffeine dose for adults is 500 mg intravenously - about 10 cups of coffee]. But if she is not better the best thing is a blood patch (I can recommend them both personally and professionally...) Good luck. I hope she is doing better.
Laura L.
Posted 10/29/2005 3:32 PM (GMT 0)

Has her neurologist performed all tests neccesary?  Has she tried Migralief(or MigraHealth)?  These are sold at pharmacy/drug stores and natural food stores.  Just an idea.  Hope she feels better soon.

Meg

Posted 11/1/2005 10:25 PM (GMT 0)

My Daughter had a headache for three weeks before the myelogram was performed.  The neurologist thought she had a small spinal fluid leak but the myelogram was negative.  She is scheduled for a MRI w/contrast 11/2/05.

The physicians are unsure why at this age she has just started having headaches.  She has never had anything like this before.  She is an active teenager involved in band, volleyball, basketball, softball and top in her class.  For the past four weeks she has stayed on the couch or bed 24/7.  

We have tried taking her places that she loves thinking the distraction would help her feel better.  After thirty minutes she is crying asking to go home. 

She can not go to school and just does not feel well. The other night at 4 a.m. she was crying saying she wishes the test would find something wrong with her.  This is NOT normal.  No meds are helping and we are frustrated.

Prayers and comments are helpful.

Janna

Posted 11/1/2005 11:48 PM (GMT 0)
i hope she is ok keep us updated
Posted 11/2/2005 1:00 AM (GMT 0)
My good thoughts are with you.  I hope everything turns out OK.

Posted 11/3/2005 12:37 PM (GMT 0)
Has a neurosurgeon looked at the MRI and myelogram to make sure there are no structural problems with the brain or spinal cord?  Im a nurse in a neurology unit.  I find that second opinions are invaluable.   Also, a neurologist and a neurosurgeon will see things from a slightly different perspective and you might find someone who recognizes something that the others don't.  Keep trying.  You will find the answer but its up to you to keep looking.  Most doctors are fine with second opinions and welcome it when they are stumped. 

Please be careful with narcotics if anyone is prescribing them.  I have seem more than one headache patient become drug addicted.  Do the best you can to keep their use to a minimum if you can.

Good luck, I hope you find your answers.

If nothing is found to be wrong internally, you might inquire about botox injections.  I hear they are quite successful in paralyzing the muscles that are cause of severe tension headaches.

 

Post Edited (diamond911) : 11/3/2005 5:45:55 AM (GMT-7)

Posted 11/3/2005 1:53 PM (GMT 0)
Our local pediatrician is referring us to a pediatric neurologist in Dalls that specializes in headaches. The MRI shows multiple white spots around the base of the brain. The local neurologist say there is nothing else to do for her. She is still unable to attend school. This was her first bad headache and it has not gone away since 9/25. The pediatrician is not happy with the local neurologist because my daughter has never had headaches. He said normally headaches start out mild and slowly build to migraine status.

I don't care what the diagnosis - just make the headache go away!!!
Janna
Posted 11/3/2005 2:23 PM (GMT 0)
Good luck with the pediatric neurologist. I'm glad to see that you're getting another opinion. I would definately ask that a neurosurgeon also be consulted to look at the MRI. Not to necessarily do any kind of surgery, but to add their wealth of knowledge about the structures of the brain to help in getting to a diagnosis. Good luck. Please keep us posted.

Is she on any kind of medications in the meantime? Several kinds of antidepressants and even anti seizure medications can do something to block the pain while you're waiting for a diagnosis.

Did they do any testing on the cerebral spinal fluid after the myelogram?  She should be tested for MS.  Also lymes disease.  The white spots could still be from severe migrane, too.   Did anybody suggest a cerebral angiogram?  This is a dye study that shows the blood flow to the brain.  If it is obstructed from a congenital defect, damage could occur in the area that is not receiving good blood flow, hence the scar tissue (white spots).  Prior to doing that, an MRA (magnetic resonance arteriogram) would be a good thing.  Totally non-invasive, its done exactly like an MRI and takes 5 minutes.    Ask about these tests.  Again, good luck.

One last thought.  Google pseudotumor cerebri.  This is a condition where the base of the brain herniates down into the spinal canal when a person is standing or bears down.  It can be surgically repaired.  One way it is dianosed, in addition to MRI is to look at the cerebrospinal pressure when the lumbar puncture is done.  If the pressure is high, something is obstructing CSF flow and causing high pressures and headaches.  Ask if the pressure was elevated on the lumbar puncture.  They should have done a pressure reading when they did the myelogram. 

I hope  I'm not overwhelming you.  Its just that there are so many potential causes of this and only a very qualified neurologist and neurosurgeon will be able to properly diagnose your daughter. 

Post Edited (diamond911) : 11/3/2005 7:49:59 AM (GMT-7)

Posted 11/3/2005 4:24 PM (GMT 0)
I appreciate your comments. My daughter is taking seizure and antidepressants. I have not seen any benefits from them other than they help her sleep.

Our pediatrician will be talking with a specialist today. If the specialist can not see her soon the pediatrician will ask what other test should be done while we wait.

Our pediatrician is the best in town. Last night he called with the MRI results. He informed me he is concerned about my daughter and will be working diligently to help her return to her normal self. He told me "I am in this for the long haul". He could tell I was very frustrated with the neurologist.

Again, thanks for your comments - it helps me keep busy.
Janna
Posted 11/3/2005 4:57 PM (GMT 0)

Important note~~~~~~~~~~~~~Has your daughter been playing video games????? If she has, they can be causing the headaches. My neurologist says that she has 6 through 9 year old patients with chronic migraines that she has traced back to daily video game playing.

If she is playing video games to pass the time, I would have her stop immediately and discuss this with her doctor. Though I would not expect it to make her headache go away instantly.

(I have diabetes and often get a migraine when my blood sugar gets too low. Getting my blood sugar back to where it should be does not make the migraine go away immediately.)

I do hope your daughter finds a solution soon. I know how difficult it is to cope with an ill child; especially when there is nothing you can do to help her feel better. Your family is in my prayers.

~Pegasis

Posted 11/11/2005 8:21 PM (GMT 0)
Dear Janna,

my heart breaks when I think about your daughter- I was 18 when the same thing happened to me. I had never had a migraine before and suddenly I had one everyday. It's totally debilitating and takes over your life. The doctors still cannnot tell me why it happened so suddenly like that- some things will always be a mystery I suppose... It took me 5 years to get diagnosed- I tried every medication and treatment known to man. I was finally diagnosed with chiari malformation and had an operation. I'm almost 5 years post surgery now, I still get a lot of headaches but they respond to medication now and I have a pretty decent quality of life now and can actually live my life. The only advice I can give is to be persistent- when the doctors cant diagnose immediately they get frustrated as well. Your daughter is lucky to have you in your corner fighting for her. The best thing the doctors finally did was start to look at other complaints I had- no matter how small. Headache is usually a symptom of something else. There is a great headache clinic in phoenix az- the website is www.gottaheadache.com. Dr. Rekate at the Barrow's Neurological Institute also primarily works with children and is excellent. The best of luck to you both and you are both in my prayers.

peace,

sarah 

Posted 11/11/2005 9:20 PM (GMT 0)
Dear Janna,

Did you find out anything about your daughter yet?

-Lauren

Posted 11/12/2005 12:38 AM (GMT 0)

Wishing you the best Janna.  I have white spots as well.  They have basically called them incidental findings. (had the whole workup for lyme, hiv, ms, you name it).  I had many MRI's,a CT Scan, Spinal Tap, Evoke potentials and an MRA.

My question for diamond911 (or anyone else) is "if the MRA was ok, should I request a cerebral angiogram?  Or is that picking fly poop out of pepper???


Posted 12/1/2005 2:18 PM (GMT 0)
The MRA will screen possible problems and the cerebral angio will show it in more detail. If the MRA is ok, my bet is that the angio will be normal, too.
Posted 12/4/2005 12:50 AM (GMT 0)
YEA!!!!

We have a diagnosis!!!

The long awaited test have returned. It took four weeks.

Bacterial Mycoplasma Infection in the Central Nervous System

This is rare but can be treated with antibiotics.  My daughter is having another spinal tap to test the spinal fluid for mycoplasma.  Her blood test showed a count of 2780 

(normal is 0-70).   The doctors think the antibiotic will rid the bacteria almost 95%.  Repeat spinal taps and MRI's will be needed at three and six months.  We were told it will take six months for her to return to "normal". 

She has not been to school since 9/23.  The headache has not stopped since 9/25. She has lost 20 pounds and is pale.  The blood thinner has helped her dizziness.  As the antibiotics work the swelling should go down and the headache will slowly go away.  Her memory problems and other cognitive problems will take awhile to return but we are thinking positive. 

We were told this is found in colds and respiratory viruses.  My daughter had a summer cold and the mycoplasma invaded her white blood cells.  Most often it causes pneumonia.  Not in my kid.  No - she had to be different.   The doctor said the lab "did an autopsy of her white blood cells and found the mycoplasma".

Thanks for all the concern!

Janna

Posted 12/4/2005 6:46 AM (GMT 0)
Janna, 

My mouth is hanging open right now.  Ive been a nurse for over twenty years, specialized in neuro for about 10 years and have only seen that about  three times in all  that time.  Thats how rare it is.  Luckily, it is treatable, but the treatment can be pretty rough, depending on the type of antibiotic they need to use. 

Get your child in the best of health to fight this disease.  Lots of good antioxidents and a low sugar diet.  (sugar feeds the infection).  I wish you the best of luck in combatting this illness.  Thanks for keeping us posted.  I'll be praying for a speedy recovery.

Posted 12/5/2005 5:04 AM (GMT 0)
animal87, just wanted to let you know that your family are in my prayers, hope your daughter gets well soon!!!
Posted 12/7/2005 10:26 PM (GMT 0)

I am so interested in your daughter's situation.

I am so glad you didn't give up on finding out what was wrong.

Is she feeling any better yet?

any other developments?

Lauren

Posted 12/8/2005 2:08 PM (GMT 0)
Hi animal can you tell me where u got the test done, i may need this test????????

Thanks Rob
Posted 12/9/2005 9:44 PM (GMT 0)

The mycoplasma was diagnosed from a blood test sent to Athena Labs.  The doctor ordered another spinal tap to test the spinal fluid for the mycoplasma.  Five days ago we went to the local hospital for the spinal tap and my daughters blood pressure was high.  The spinal fluid test for mycoplasma will take several weeks to get back. The routine test (glucose, protein, etc. ) are normal. Since the blood pressure was so high she was taken off of the antiinflammatory and stomach medication.  We have monitored her blood pressure all week and it is sky high. While she is asleep her blood pressure is 135/96.  While walking around the house it is 160/119.  Now my 15 yr old is taking Corgard for high blood pressure.  We are scheduled to return to the pediatrician Monday morning for further test.  The pediatrician is also referring us to a pediatric nephrologist in Dallas.  My daughter still has a headache, fatigue, and dizziness without a diagnosis.  The only thing we do know is that mycoplasma is high in her blood.

Posted 12/11/2005 12:21 AM (GMT 0)
We may be on to something!  Pediatrician called this morning and wanted my daughter to be seen by an associate.  Headache for ten weeks followed by recent high blood pressure.   We will return to the office for more test on Monday but this is what the doctors are thinking.   The first neurologist we saw stated he thought the headache was hormone related.  Three neurologist have not been able to find the cause of the headache.  Now with the high blood pressure they are looking at the kidneys and the adrenal glands.  They think the adrenal gland is producing too much.  Now we must find out why the gland is overactive.  This can be several things but I think we are finally on the right road. 

Any comments, suggestions, recommendations, and/or prayers are greatly appreciated.

Janna

 

Posted 1/12/2007 4:30 AM (GMT 0)
My daughter has had similar symptoms and we would like to get more information from animal87. Strangely enough, my daughter was in East Texas right before she got sick. She got sick in Oct. of 2005. A neurologist in Dallas diagnosed her initially with mycoplasma but we haven't been able to stop the headache. She has had a headache for a year and 3 months.

Anyone who knows how to contact animal87, please let me know.
Posted 1/20/2007 9:42 PM (GMT 0)
I am so sorry to hear about your daughter, it must be really tough on her and the entire family.  Although this is not a cure, a common home remedy may help relieve some stress and tension.  One thing that I've done for years is to place icepacks on the side of my face by my trigger points. I use this product that I found online called the IceCaddy. It's a velcro sling that has two pockets on either sides and lets you ice your face hands free. It also comes with two icepacks for your convenience.  This might help your daughter because she is new to migraines and is still not exactly sure how to go about treating them.  You never know, it might be as simple as relieving some stress and relaxing for a while with icepacks on her face.  It might just do the trick.
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