A related discussion, Any relief? was started.

I know how your son must be feeling.... I hve choronic severe daily blindly, stabbing headaches.  I had a prescreiption for vicodin and my doctor's took it away from me to see if it was rebound headaches, and it wasn't.  They still have not given them back to me.  I also have severe inner ear problems in my right ear and have yet to receive a diagnosis a year later and 12 doctor's later.  I have been told to preety much suck up what i going on with me.  I, too, have had all types of tests done and nothing was out of sorts except my right ear was 84% adnormal...still don't know entirely what that means.  I can't focus on school or my house with these horrible headaches.  Sometimes I just would rather die to get the relief because no doctor is going to give me any.  And the frusteration doesnt help the headache.  I have even been told my headaches are caused because of my ear.  Why take medication away that works?????  So, I hope you have better luck with your son than I have had.  I believed you mentioned he was 16....Im only 21, too.

Good Luck,
Crystina

Well, I had that Orbital MRI....they are now saying that I have normal orbits and a left frontal venous angioma..... well, I see the doctor on Monday....wish me luck.........

I have been having left sided headaches for 8 months. An MRI says I have a hemangioma.  However the doctors say we are leaving it alone.  The MRA says there is no bleed. I saw an eye specialist and he's sending me in for an optical MRI.  I take barbituates on a regular basis and am just wondering what in the world is going to happen next...they want me to go see a nuro/optical doctor after this but I'm scared to death.... I'm a single mother with two kids..  Anyone with any suggestions?

I have been suffering from headaches for the last 5 years and they have been continuous for going on 4 years.  I have had many test CT, MRI, MRA and blood tests to numerous to name.  I found out I have severe anemia which is only treated by IV iron and Aranest (a shot for anemic cancer patients) this usually works for about 6 months before it comes back.  I have found no treatment for these headaches.  Some days they are really bad and I can bearly function and some days it is managable but it never goes away.  It is only on the right side of my head, my right eye is always watery and runny, often I have pain and or soreness behind the eye.  I have been to at least 26 different doctor of various specialties.  I do have a side bar all this trouble began about 2 months after having 2 swollen lymph nodes removed from my neck.  I have not been to the doctor about this for about 8 months because I am sick of doctor telling me "Something is wrong but I don't know what it is"  and "It will be trial and error".  There is so much more but I would be writing all night.  I am in serious pain right now and I am annoyed that nothing helps.  I have tried to many drugs to name and even Percocet doesn't work.  I am at a loss.  Any suggestions?

Hi, on your comments regarding headaches, I am at a loss, I have follwed the docotrs orders on eating, reducing stress, taking a look at the meds that i am on, and nothing seems to be helping, I was hospitalized for a week in late aug early sept, for headaches, I get this tingling on the left side of my face follwed by what seems to be a tunnel vision, then numbness on the left side, and then the headaches hit. on this particular day that i was admitted, i had stroke/seizure like symptoms, i have taken lots of headache medicine nothing works, or it makes me sick, has anyone used topramax and have they had any results with it, what are the causes of these headaches, in the hospital thay did mri's , mra's, cat scan's and all were negative for anything

My son has congenital hydrocephalus and epilepsy diagnosed at 5
months old. He is 12 years old now. His seizures are vomiting with
migraines. He has never had a shunt malfunction but I'm told vomiting
with headaches is the symptoms. Almost 2 weeks ago he woke up holding
the front of his head and began puking. So we went to the hospital
assuming it would be seizures, he was hooked up to EEG( 5days total)
no seizures. Had lots of blood work, MRI, CT, MRV, and migraine meds.
NO pain meds are helpful either. Neurosurgeon says scans look fine no
shunt failure. In the mean time he has still been vomiting with the
headaches. He has been on prednisone for 16 months at a very slow
tapering and down to 5 mgs. for the past 10 weeks. so the only answer
the Drs. gave us were it must be the tapering of prednisone. they
increased it and he seemed fine. That was Saturday( 12 days after the
onset) They sent him home Monday and Wed He had the headache and
vomiting again. My question is:
Can the prednisone be masking his seizures?
Can the Reglan they gave him for neusea have made things worse?
Can the weaning of the prednisone 10 week tapers at 2 1/2 mgs. at a
time be doing this?
Could it be the shunt working too good all of a sudden? The CT that
he just had in the hospital shows his ventricles are much smaller
than 2 years ago.
but the NS dont think is this is a problem. We are in a good hospital
(NYU) but I am very discouraged that my son is in so much pain and no
diagnosis in 2 weeks now.
ANY help would be grately appreciated!!!

Thanks for all of your help everyone.  We went to the university of michigan and saw a pediatric neuroloigist today.  He said it started as a migraine and then it formed a cluster from all the medication my son was put on by other doctors.  They have him on prednisone for a few more days and pamelor( antindepressent) to help prevent them.  We also started going to the chiropractor and they do saw his neck is out of allingment.  Hopefully I can get him back to as close to normal soon.  He is missing so much school, sports, just being a teenager.

charchar I am not a doctor just someone who has found comfort from my problems by being extremely vested in them.  My wife is also bi-polar, after a problem period she was falling apart like your daughter.  And yes by the sounds of it your daughter is falling apart.  We found several new doctors who took her off the 5 drugs she was on and brought her down to 1 and life is muchhhh better.

At this alarming rate of her body breaking down I am very afraid for her. I feel for you, and hope my suggestions can help in some way.  First of all see 3 or more doctors before having any more organs removed

I have dramatic food allergies that tend to give me headaches.  Food allergies tend to manifest themselves over a defined period of time, unless you continue to ingest the same allergen.
i.e. I eat and about 18 hrs later my headache goes away.  This is about how long it takes my system takes to get rid if the food.

Remember that ingested allergens don't have the same effect and will not show up on a scratch test.  The only way to determine if your allergic to food it to eliminate it from your diet.  I test negative to corn but get a very obvious allergic reaction to it when I eat enough of it.  p.s. corn is in nearly everything!!!  Not prepared from scratch. i.e. soup has corn starch, almost all soda has corn syrup, as do most condiments, paper plates are coated in corn oil etc...  So you have to be very very diligent to truly eliminate a food type.

I and family members also have other allergies that give me headaches.  Please consider the following.

1) Chemicals: fabric in the clothing that your son wears, detergent that you use to wash his clothes, soaps that you use to bathe with.  Carpets in your home are sprayed with chemicals to keep them nice and stain free.  These types of things will give long term effects since it stays on the skin or ever present in your environment.  

2) Several of my family members have a condition where they get headaches and their health is generally bad unless they get lots of sun.  As a result they now live in Arizona and New Mexico

3) You might also consider seeing a chiropractor it could be a bone alignment problem, chiropractors are exceptional at reviewing xrays and may see a pinched nerve or other structural issue.

4) Internal chemical imbalance.  Sometimes our systems get out of whack, see a psychiatrist they are masters of chemical imbalance problems, it could be a mild seizure or bi-polar style chemical style imbalance.

Most of these will make you feel like your putting your son through tests as a guinea pig but trust me this is way preferable to the headaches.

Thanks and good luck
Gary Carroll

Hi, I have a daughter that has non stop headaches . She takes Ultram every 4 hours.And she can manage them with that. She just started having seizures in July this year but she had the headaches before the seizures.Also she has tremors sometimes so bad that she cant walk alone without falling. She is now on Dilantin, Topomax, and Ultram and elavil she also has to take about 50 enzymes a day to digest her food and she takes prevacid and insulin for diabetes due to a pancreatectomy done earlier this year.And her family dr. has shut down her periods for 2 years due to endometreosis.Does anybody agree that maybe her problem is all this meds? And if so how do we get away from all this and not have seizures? She can't go without her Ultram because of the pain from the headaches.Otherwise it sends her to the ER.They can't do a mri because she has a pacemaker ,her ct scan comes out normal and her eeg doesn't show anything. Her neuro is trying really hard .She has to have her seizure medicine so she wont have anymore seizures and she has to have her enzymes and insulin and her elavil is to help with her sleeping and headaches. We have tried numerous meds for migraines but they dont work for her. We don't know what caused her to start having seizures. Her dilantin level was 22.2 today and he is taking her down starting tonight . She is only 20 years old and it seems like she is falling apart. She has had her pacemaker, pancreatectomy, gallbladder removed, appendix removed and endometreosis cleaned up all within 2 years most of it done within one year (her pacemaker was 2 years ago.)Does any one have a trick up their sleeve??? Is there something were missing.??

We did have blood work for Lyme's and it came back negative!  But thanks for the advice. We are hoping for a miracle on Friday when we go to U of M.

I just recentlently had a baby 9 months ago and for the past 8 months I have been getting daily migraine headaches.  Most of the time they are unbareable.  I have had migraines since the gae of 10 or 11. I went to the neurologist and they put me on steroids, which I never heard of.  Along with them I was given fiorocet and low dose Elivil.  They said that you have to give it time and it will work.  They said that narcotics do not help migraines.  I gave this time and this did not work.  All my head MRI's were normal and EEG was too.  I am going to one of the best headache centers in New England so I still had hope.  The next step was that when my baby was 4.5 months I was told that if I wanted to be treated aggressively I had to stop breast feeding.  This killed me but I was no help to my baby in pain everyday.  I was now put on more steroids and valium 5mg 3 times a day which zonked me out and made me high.  This did not work the next was phsical therepy for several months, but I was never injured, never took a fall or anything like that.  They said that amy muscles were all in spasm.  After a few months my headaches were not better no th P.T. discontinued me.  Now thw doctor's office realizes that nothing works.  I have tried Relpax, Zomig, Imitrix, etc...  The main doctor now sends me to the pain management doctor in the same office who has much more compassion for pain.  I do get stadol nasal spray which is a strong medicine and a narcotic.  I use it only when I have to, never every day.  It is the only thing that take my pain away but it tastes bad but I never abuse it.  I have low blood pressure so I can't take beta blockers to prevent headaches, instead they give seizure medication.  After trying one that does not work I am on a tapering dose of Topamax which is not up to full dose but is starting to give some relief.  A lot of people don't know this but we get vitamin D from the sun.  I spent most of my spring and summer inside beacuse of painful headaches and on a rare ocassion that I did not have one, the sun gave me one.  I don't drink milk either.  My doctor did my blood labs and Vitamin D.  The doctor said that she has never seen a Vitamin D level so low in all of her years of practice.  So if anyone has been laid up for a while they may want to check their Vitamin D level.  I was getting cramping in the muscles and joints and now it can be fixed w/ vitamin D pills from the store.  And with the Topamax I have great hope, it really gets better every day.  I actually started to lose my hard to lose pregnancy weight, that being my ony side effect so good luck I gonw what you are going through.

The headaches continue and he has missed over a month of school.  WE did take him to the University of Michigan ER and all they did was numb the pain.  They put my son on Prednisone and Pamelor for right now.  They had as taper the prednisone and then the headache got worse.  We are going to see the Pediatric neurologist at U of M on Friday morning.  Thanks for all of your help and suggestions, I hope to get to the bottom of this soon.  He is so down right now and missing out of a fun time in life!

Hi I saw your post and I suffered the same thing as  a child. I had headaces and later Dizziness for days a t a time. This was back in mid to late 80's. I had multiple catscans and MRI's. Nothing wrong was found. I was about 16 when I went to a neurosurgeon twice in a month. She cancelled the MRI for that day because I had grown 1 1/4" in a month. She put it down to growing pains. They did cease after puberty and slowed down as I finished growing. I know it doesn't help but sometimes there is a simple ezplanation for things. I was on unlimited tyelenol coedine during this time. I hope he gets better soon.

Hello,
I have a relative with a similar condition. All tests were normal, Ctscan, MRI, etc, until one day somebody suggested an EEG.  And the result was positive. He was given Topamax and Trileptal and his response to the drugs were dramatic. It seems like his headaches were "seizure" equivalent.

Before this, he has been having a series of on and off severe headaches with vomiting.  The headaches were so severe, he was confined to his bed for days.  Everytime he had attacks, he thought it would be his end, all of us were sad.

It is so easy to label headache as psyhosomatic, or tension or migraine attacks but I consider these "waste basket diagnosis". We were lucky to have a very caring, attentive neurologists who is willing to answer even our text messages.

I hope and I'll pray that your son will get an expert, caring help soon!
Cecille

I've had migraines everyday since 2002, when I moved from Winnipeg badk home to Toronto.  It's agonizing pain moreso now because it feels like suction cups yanking the back of my left eye, and the left side of my head feels dizzy or numb and sometimes the whole left side of my body.

This also relates to the fact that I can only wear a hearing aid in my right ear (processed by the left brain) because I have noise sensitivity (Hyperacusis, the hyperacusis network is at www.hyperacusis.net)
in my left ear.

Noise sensitivity is also related to taking Presciption Drugs, the mercury in flu shots, acoustic trauma, etc.....I wasn't told anything about this for the first four years, so I didn't have a clue about the Hyperbaric Oxygen Chamber and white noise machines from Sears or Zellers that would have helped.

I sleep all day pretty much everyday, agonizing pain which I do partly blame on taking Paxil, because all SSRI's do cause side effects which include migraines (medical researchers do know this, found info. on a Christian Science Site).

I'am in Toronto, the Cdn. Hearing Society and doctors chuck off anyone with ususual problems with a mental illness, even though they are fully aware of the root problems or why this happens, because engineers, chemists, acoustic consultants and Physic Professors know way more about how sound affects the body more than doctors.  They also do experiments with animals daily with loud intolerance levels, but they can't talk and machines show nothing.

The only thing doctor's know is that they don't know anything unless I have an MRI, which I refuse because my problem is from loud noises and people with hyperacusis go into grave horrifying noise problems after, and I won't take the chance, so they can't seem to offer me any PET or SPECT tests and I really think I probably got some Acoustic Tumor in the brain or something and then they'll say "Well, we just don't know anything".....well, I've been trying to tell someone for the last ten years but everybody keeps saying "I don't know anything".

I'am glad I found this site, because it's just absolutely mind-boggling how many people are disabled from flu shots, diets and drugs and doctors pass us around and don't know anything.

Blood patches are used for low pressure headaches, such as with a persistent spinal fluid leak from a spinal tap - but if your son had the same headaches before the spinal tap this is unliekly to be the case.

An infusion is an intravenous administration of a stronger pain or headache medication. Types of infusions include Depakote, dihydroergotamine, or steroids - all of which can be effective i naborting an acute headache. When headaches are frequent (more than a few a month) then medication to prevent or reduce the frequency of headaches should be taken such as nadolol, depakote, amitryptaline etc. Your nearest headache neurologist should be aware and experienced with all these meds. Some headache are very sensitive to certain types of medications such as oxygen for cluster headache and indomethacin for hemicrania - again I cannot diagnose these conditions but your local neurologist should be able to

Good luck

It was important to exclude a serious cause to the headache liek you have done ie tumor etc.

Hi,
I would take your son to a major teaching hospital so they can dig deeper into his headaches. Do not go away without an answer. Keep searching. My friend had unending migraines for 10 months and after two weeks in the hospital they finaly diagnosed her with melanoma that had spread throughout her body. She had been complaining for 10 months until her symptoms became so severe she was taken to the hospital(falling down, slurred speach, memory loss). Not saying this could be what your son has just saying to keep seeking answers until you have a diagnosis.Good luck.

i think sometimes a lot of these symptoms go with muscle tension headaches....especially athletes who overstretch their muscles and probably have micro tears within the neck....sometimes massage therapists or physical therapy helps alot.....you could go online and look under info regarding symptoms of micro tears in neck.........you can't see these on xrays           good luck

I do however have a benign mass of some sort in my frontal lobe area.. this was not even reported on MRI reports until I sought help at the University.  The doctor told me that the operation to remove this would be too risky to think about at this point, and he's not even sure if its causing my problems.

Just curious does your son have a blocked nose?      If you get desperate enough I would highly suggest going to a university hospital, these smaller suburban hospitals in my city are questionable at best when it comes to complex problems, IMHO .    Good luck

Forgot to add. The whole time she was having these headaches her GP told her to 1) go see a shrink 2) it was due to stress 3)due to menopause(she is 46) 4)go to church and pray they headaches will go away! I think that because she is a woman that her GP was thinking she was making it up.

Thanks but the doctor thinks it was a migrane that is just not going away.  We have had allergy testing and he did not react to any food a year ago.  He had imitrex all day with only a little relief.  We are going back in on friday for possible DHE treatment.  Thanks for trying to help!

He has had a little dizziness when he gets up from sitting or laying down.  He has had no confussion but has a hard time concentrating.  He is an athlete and does eat very well for a teen.  He eats a very balanced diet to stay in condition.