The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=31&m=922906
Posted By : Joan123 - 9/24/2007 11:19 PM
We are currently looking for answers to my 14 year old son's headaches.  He is going on 3 weeks with severe head pressure, stabbing pains every 2-3 min. behind right ear, left frontal lobe and back of head, general headache in all areas of the head and loud swooshing sound in ears that sounds like blood pumping?  Sometimes the ear noise becomes so loud he cannot hear anything over it.  He also has bouts of severe nausea.  This has been constant for 3 weeks.  His pediatrician is at a loss and has suggested nueralgia or atypical migraine.  His MRI was normal and there is no evidence of an ear or sinus infection.  I asked about pseudotumor cerebri and his pediatrician is staying clear of that one for reasons I don't know.  Our pediatrician is trying to get us an emergency appt. with a pediatric neurologist tomorrow.  Ibprophen, tylenol, etc... do not help him at all.  He tried Imitrex which did nothing for him.  Now we are trying Midrin which temporarily helps with the stabbing pains but nothing else.  At this point, my son can hardly function.  Anyone have any ideas or does this sound familiar?  Any thoughts or experiences would help.
 
Also, my son has crohn's disease, secondary adrenal insufficiency from long term steroid use, osteoporosis from steroid use, and gastroparesis.  He has also had several other secondary crohn's complications.  The meds he is currently on include:  Reglan, Nexium, Oxanderlone, Prednisone, Bentyl, Humira, Amitriptylin, Vitamin D, Multi-vit. with iron, and calcium.
 
Joan 

Post Edited (Joan123) : 9/25/2007 12:53:38 AM (GMT-6)


Posted By : baseballmomof3 - 9/25/2007 6:48 AM

Good Morning Joan.

First, I can't answer your question about what this might be but I can tell you a couple of things that I have experienced.  I have that swooshing sound in one ear occassionally and it seems to be getting more frequent.  I just had it night before last and it just about made me crazy.  I have no idea what it is but I am going to do some research and also talk to my neurologist about it.  I have wondered if it is my "aura".  I actually started getting a migraine several hours after the "swooshing".  Your son describes it very accurately - it sounds like your blood pumping and you can hear it in your ear - it makes me crazy!

Also, I have a friend who's 12 year old daughter has been suffering terribly with headaches for approximately 9 months.  She was originally diagnosed with the whol pseudo-tumor thing but no one pays much attention to the diagnosis.  The neuro-opthamologist says she doesn't have the "true" signs of the pseudo-tumor.  I believe the reason they diagnosed her with it is because one of her spinal taps (LP) came back with high pressure.  Anyway, I don't put a lot of credit into that diagnosis.  After having everything else ruled out, I truly believe she has migraines.  She has been seen here in Atlanta and also at the Diamond Headache Clinic in Chicago.  This is a child who was a competitive cheerleader, softball player, etc. before these headaches started.  She is now not even able to attend school.  It is so sad and nothing they try has worked.  I will keep you updated and maybe between the two kids, we can find something.  After reading about cluster migraines, (even though she doesn't fit the typical profile of being a 40 year old man), I believe her symptoms suggest that her headaches are cluster migraines.  She has them every day, does not have the nausea or vomiting and can't lie down or sit still when she gets them.  She wants to be sitting up and her legs move constantly.  Her parents called the doctor in Chicago and requested home oxygen therapy for her to see if it would help.  He prescribed it and they started it yesterday.  For part of the day yesterday, her headache decreased but then by last night, it was severe again.  So.....who knows if it will help.

Anyway, one thing you might consider if all of his tests come back normal, is trying to make your son an appointment with a Headache Clinic.  I don't feel that a regular peds neurologist will be much help, but maybe....

Please keep us updated and I will let you know if I come across any answers for the whooshing noise or anything related to peds headaches..


DX:  Migraines since June, 2006, kidney stones
 
RX:  Daily - Verapamil, Trileptal
PRN:  Relpax, Prednisone, Dilaudid, Lortab, Lidocaine Nasal Spray


Posted By : Annuk - 9/26/2007 6:11 AM
Hi Joan123,

I can only endorse what baseballmomof3 has said and get an appoinment at a Headache Clinic preferably to see a Headache Specialist.


baseballmomof3,

It could well be that your friends daughter has Clusterheadache - it certainly sounds like it from your description. If this is the case the O2 will help each attack, but with Clusterheadache a sufferer can have many attacks per day, thankfully with O2 you can have it many times per day!!!

How long do the attacks last? I know the typical stereotype is that Clusterheadache is for middleaged men but I do know of one 6year old with it and a teenager, both are male but I also know of many young women with it too!!!!

There is a skill to using the O2 correctly to abort attacks, if you want any further information please email me and I can give you some tips as how to get the best out of the O2! I use O2 as it can be helpful in other headaches too!!

take care

Ann


Co-Moderator of the Migraine/Headache Forum


Posted By : Joan123 - 9/26/2007 4:32 PM
Well we got it narrowed down. My son saw an opthamologist yesterday and she saw papilledema in his eyes, with it being more severe in his left eye. She also saw a hemmorage next to his optic nerve. What she saw is seen in psuedotumor cerebri and cerebral veneous thrombosis. In the next couple of days, my son will have a MRA and a lumbar puncture to firm up the diagnosis.

Joan


Mother of son diagnosed with Crohn's at 12 years old, Oct. '05.  Also has secondary adrenal  insufficiency and gastroparesis. Meds:Nexium(40mg/2xday);Cortef(2.5mg/evening); Prednisone(5mg/morning); Humira (40 m every 2 weeks); Dicyclomine  HCL(10mg/2xday);Reglan (10mg/4xday);Multi-Vitamin w/ Iron;Vitamin D; Tums;Probiotic; Zofran as needed. Hospitalizations:  Oct. '05-Kidney Stone; Nov. '05-Pancreatitis; Aug. '06-C Diff Colitis; Oct. '06-removal of gallbladder; July '07-Gastroparesis.


Posted By : pamela123 - 3/26/2008 1:00 PM

Hello Joan, I hope you get this message,  I have a child with many similarities and wanting to discuss,  What was the treatment for your son?  Has it helped?

Please- if you have any information, I would love to know.  My daughter has adrenal insufficiency and recurrent pancreatitis and gall bladder removal and much more.  She is in terrible pain regularly.

My daughter is suffering terribly and we are not getting any answers.

Thanks

Pamela


Posted By : missy274 - 5/25/2008 12:30 PM
I have a 13 yr. old that just went through this for the past few months we have had 2 spinal taps within 2 weeks for pressures. We have been through tons of tests including Chrohn's disease Ms and lots of others. Friday they took a blood test for Myco Plasma. We will find out results Next week. His symptoms started in Set.07. The closest thing that we found that could be it is this MycoPlasma. It is a Bacteria infection and has a nickname of a shapeshifter bacteria. There is tests just for this and will not show up in any blood work. Only certain antibiotics will treat this problem. You can look this up and if you think it is something worth looking at talk to your Neurologist.
My heart is with you and your family I know what you are going through. My son will complain of headaches, Throwing up, has Memory loss, above right ear hurting. Headaches all over. They are also looking at Pseudo Tumor Cerebri. If you look up Mycoplasma it may surprise you as it did me that it has alot of traits that we are having. It is also common in kids but kids with immune problems can not beat it like healthy kids.
In Sept. we started losing mobility with sever tremors in left leg and all the other things you have had
Best of Luck.

Posted By : missy274 - 5/26/2008 2:20 PM
Joan123 I was wanting to know how your son is doing and if they found anything.
Pamela 123 I seen your message. Have they checked for MycoPlasma? My post to joan 123 is above this one. Maybe this can help. It is a bacterial infection and has many symptoms.
My son has GERD, headaches,Migraines, anemia, pseudo tumor possible and as of last week we are showing eye problem on a field vision test.
I would like to hear from you and joan 123. My heart is with both of your families.

Posted By : lov2teach - 4/5/2009 10:08 AM
Hi.
 
I have read the posts about the struggles of your children.  I am 38 years old and dealing with the same symptoms.
 
For the last 6 weeks I have had constant pain, pressure behind my ears but at the same time it is as if I can hear the sounds of "stuff" moving.  It hurts so bad I cannot do anything.  Along with this pain I have my migraines and nausea, vomiting and overall misery.  I cannot call into work everyday or tell my 9 and 7 year old boys to care for themselves so this has been a very trying time.
 
I just want answers and cant get any.  I had an MRI done on Thursday but  no results yet.
 
My post is probably difficult to read b/c I am in lots of pain as I write.
Any advice would be appreciated!
 

Posted By : Rooster427 - 4/6/2009 4:39 AM
Have you guys ever looked into the possibility of a csf leak. Wooshing sound is very suspicious. If you have headaches constantly see if there is a positional aspect. Is it better when you lie down or stand up or no difference?


"God won't take me to what he can't take me through"


Posted By : dedee - 12/16/2009 10:31 PM
hi I was diagnos with pseudotumor cerebri 2 years ago I did had a csf leaf .I had a ringing buzz on my left, I was losing my vision where the papilamima was in a cronic stage, I would lose equilibrium, i was forgetting things and gaining weight. oh and severe headaches with palpitation on my temple. Lumbar punctions where done to release the pressure. Finally a shunt was put in for drainage from the head. I had to go on disability because even thou it has aliviate from some of the pain I still hear once in a while the buzziness and I still have the headache. The thing is once you have been diagnosis with this your symptons could stay in ressesion but i could come back

Posted By : green66 - 2/2/2010 9:21 PM
Hi there,

I definitely had the whooshing noise in my ear, which I self-diagnosed as tinnitus (http://www.dizziness-and-balance.com/disorders/hearing/tinnitus.htm)

Although I did not have any of the causes listed on the site, I was severely anemic. When I upped my iron intake, the pulsing, fatigue, and jaundiced appearance of my skin disappeared. Best of luck.

Posted By : paulyb - 3/11/2010 7:19 AM
Hi pauly here,
 
I'm new to this at the moment.
I keep thinking i have a serious problem.
 
I get ringing in my ears all the time, and severe head pressure to the point where i think my head will explode or i get a brain hemorrhage.
 I feel sick as well when it comes on, and i have it since i was 25, and I'm now just gone 29.
 Ive had all the tests, heart monitors, mri scan, got several different doctors opinions but to no avail.
 It has changed my life dramatically and i need to reassure myself that it is not a serious illness or something.
 It comes on when i least expect it and i want to know why.
 It is affecting my entire life and i would love if there was anyone else like me? My health was fine up to 25 years. Please help me to figure this out.
 
Worried

Posted By : hungryhippo - 3/15/2010 5:23 PM
Hi everyone,
I have had a constant head pressure and tight throat and chest since I could remember... at least 4 to 5 years. I am 23 now. It's there everyday along with the chest pressure and shallow breathing. My symptoms don't ever go away, but they never get any better or worse. They feel the same intensity all day everyday, but I still feel like I am going crazy all the time. Having no insurance and being in debt due to school has made getting help a daunting task. I don't know what to do for help. My head pressure and chest/throat tightness has an effect on my mind. I walk around all the time with a cringe on my face because it effects my mood and makes me miserable. I fight it when I am around the public but fighting it doesn't ever make it any better. I am hoping someone else has something like what I am describing and has had positive results with treatment. If anyone else does, please please help. Thank you.

Posted By : lavendar - 3/16/2010 4:26 AM

Hello new member
I think what has helped clear my tight chest is peppermint oil from the health food store. You may have asamah or alergies a small bottle should cost about 9.00 , It is not the same as the stuff you buy for baking. I use it for the head aches, clearing my chest. use it on a cotton ball than inhale, just a little at a time it smells great and has many uses. If your tummy is upset put a drop or 2 on the palm of your hand and lick it. If you take to much you wont be able to catch your breath maybe for beginners put the drops in coffee or tea. It's also good for mild headaches just rub it on your tempels
Now the stabbing pain some times feels like stabbing sometimes as if someone is pulling at your hair in one spot. The swishing , bubble, bursting in the hopeyou go hjuneaj

Posted By : katie323 - 6/24/2010 12:20 AM
i know you posted this in 07' (which is when i was diagnosed with intracranial hypertension) but i thought i still post about my experience because a lot of people go undiagnosed.

very much like your son i kept getting the run around saying it was just a migraine. i was 17 and it was the day after christmas when i fell ill. i suffered from migraines since i was 10 but that day after christmas things just fell apart. i woke up vomiting and it felt like an elephant was sitting on my brain. to top it off it also felt like someone was ripping veins out of my brain one by one. i was vomiting and shaking, it was ridiculous. i thought it was the flu and so did my parents. but after 3 days and only becoming worse we went to urgent care. they said i didnt have signs of mengitis, gave me a shot for pain relief put me on some migraine meds and sent me on my way. the shot nor the pills worked, not to mention the pills sped up my heart rate. two days after that (still puking and maybe an hour of sleep a day if i was luck) i woke up and my was seeing DOUBLE. when i looked in the mirror my left eye and turned inward. i woke up my parents who freaked out and rushed me to the emergency. they gave me a vision test (so stupid, of course if i cover one eye the other sees fine) they gave me an other shot, handed me some more meds and said it was just a terrible migraine.

now youre probably wondering "why didnt your parents take you to your pediatriction?" she was out of town until jan. 2nd. i dont know how but i held on and saw her. she was freaked out and upset the emergency room doctors didnt have a neurologist look at me. she sent me to her sons neurologist same day and he figured it out right away. he checked my eyes, ordered an mri and some blood tested and the next day i was in the hospital for a spinal tap. the relief i felt from that tap was awesome. it was instant relief and it helped that my neurologist is the nicest most gentle man in the world. when they measured my spinal fluid they said it shot out of the tube so it was hire than 60. i could have lost my vision and probably worse but thank god i had a doctor who knew his stuff.

since being diagnosed ive had 32 spinal taps and i'm now 21. the swooshing sound in my ears seems to never go away and it drives me nuts. today i called my neurologist and was like hey doc do you think you can see me friday for a spinal tap (we've become quite close after 32 taps) and now im awaiting my authorization call from the insurance. i haven't hadf a spinal tap in almost a year which is a vast improvement from every week or two. its tough and i could have gotten a shunt but that only causes more problems.

if you or your kid suffers from these symptoms dont listen to your doctors when they say its bad migraines. so many people go undiagnosed with IH and its not fair. ask to see a neurologist and get a second opinion. your brain and eyes will thank you later.

Posted By : rosegirl - 9/25/2010 11:43 AM
i know this is an old threat but if the noise/swooshing/headaches/nausea is still an issue don't rule out Superior Canal Dehiscence Syndrome. thought i would share, just in case!

Posted By : Lotusrising - 10/14/2010 12:52 PM
check out hyperacusis.net for info on sound senstivity

Posted By : Lotusrising - 10/14/2010 3:10 PM
check out hyperacusis.net for info on sound senstivity

Posted By : Mahalo12 - 10/24/2010 2:24 AM
New here.  Just spent 11 days in the hospital after getting a severe headache that felt like my head would burst open any moment along with vomitting and severe light sensitivity.  No relief from exedrine or any other meds I had at home that usually work.  I was shaking and had no idea what was going on around me.  I was taken immedietly to the closest ER and when they asked do you get headaches I said yes, everybody does.  So from that point they made an assumption it was just a bad migraine, but I am 26 and truly haven't had a headache like this ever.  The docs barely examined me and didn't even check neurologic function.  They did a quick CT which was fine. They pushed dilaudid and toradol which had minimal relief.  They wanted to send me home when I couldn't even stand.  I am a nurse and demanded a Spinal Tap.  Thank god I did!! (To everyone out there, you have a right to fight for your care.  Docs sometimes get so focused on one lil thing so they try to fix it and get you home so they can work on the other patient next door. Always fight and ask questions!)  Anyway, my LP pressure was so high it shot out of the tube and wouldn't measure.  I felt some instant relief at this point and they admitted me.  By the time I got to my room, my back had leaked a lot more CSF and blood onto my gown and sheets (the pressure was that high, that fluid was finding any way out).  They also told me I had increased WBCs but it was nothing significant, but as a nurse I know better.  They refused to listen to me, told me the pseudotumor cerebri was from being overweight, and once I lost weight I'd be fine.  I called my doc for a transfer and finally I got someplace that cared (have a good relationship with your primary doc in case you are in a situation where you know something isn't right and the ER or admitting physicians aren't properly taking care of you.  I also suggest finding a primary doc who has admitting privelages to a more specialized hospital in your area.  When I called my doctor and told her everything she got me out of there in 2 hours time)
 
I had a viral meningitis (hence the increased WBCs) with many antibodies and had a fever.  The neurologist also thinks I have undiagnosed underlying pseudotumor cerebri.  My second tap at this hospital with a neurologist doing it properly showed I still had increased pressure of 40.  They followed up with an MRI and cerebral angiogram of which the angiogram was normal and my MRI had some spots that looked like Lupus.  My blood work was negative for lupus now, but chances are it is highly probable that I will have this as well. I also have within the last 6 months been diagnosed with hypothyroidism and started on synthroid and severe rheumatoid arthiritis in which I was on a lot of immunosuppressing drugs due to disease I have I cant,  this could maybe stop in 6 months or a year or never, and I can lose my eyesight.  I am on diamox which seems to help somewhat but makes the ringing in the ears worse and sometimes I can't hear at all and Fioricet for the headaches (wonderful drug)
 
I had been getting moderate headaches for a little over a year. They were much worse when bending over or coughing but exedrine did the trick.  Never had vomitting or light sensitivity with them.  I've had lots of episodes of being dizzy and one time of passing out in the year.  Had multiple episodes of my visual field getting very dark.  I had a horrible ringing and heartbeat swoosh in my ears with occasional temporary hearing loss.  I had just seen my PMD because my eyes and my ears were hurting me so bad (and now I get why).  I have severe papilledema of my eyes of which are already messed up from the RA I have.  It's frustrating to me because my specialists can't really change my meds or my weight to make this go away nor can I due to these other diseases. But I am getting better, I just felt like sharing my story because I've been there and I understand. 
 
For the original poster of this thread, everything you described sounds like pseudotumor cerebri caused by the steroids (which is what they think triggered mine).  Of course you and I know they can't be stopped while trying to keep other diseases in control.  I truly hope they have figured out a plan for your son so that he never has to suffer the kind of pain I am all to familiar with now.  Good luck to you.
 

Posted By : LuDLu - 10/28/2010 2:25 PM
This sounds just like me (I actually have a few more symptoms). I was diagnosed with psuedotumor cerebri 3 months ago.

Posted By : empress - 10/29/2010 7:45 AM
i have a pain in the right top side of my head, my eye on the same side hurts alot and this may become more difficult when im exposed to the sun. i have a feeling in my ears like something is rushing through or in it . this has been a problem for a few weeks now and im only 17 yrs old. i am terrified and scared that i have a brain tumor. i think i have dry eyes an wonder if it is causing the pain in my head. plzzz plzz helppp ! im scared. and also i soemtimes experience shocking veins ( i think) in my hand or legs.

Posted By : empress - 10/29/2010 7:45 AM
i have a pain in the right top side of my head, my eye on the same side hurts alot and this may become more difficult when im exposed to the sun. i have a feeling in my ears like something is rushing through or in it . this has been a problem for a few weeks now and im only 17 yrs old. i am terrified and scared that i have a brain tumor. i think i have dry eyes an wonder if it is causing the pain in my head. plzzz plzz helppp ! im scared. and also i soemtimes experience shocking veins ( i think) in my hand or legs.

Posted By : Snot - 11/6/2010 8:25 PM
Hi and excuse my bad english!i have all these symptoms for many years ,at least six,(i am 30)and was trying to figure out what causes it.atm i'm experiencing a big pressure on my forehead,back of the head and behing ears and can hear my inside from my ears.especially my left ear.anyway..as i was saying i was trying to figure out what causes that and noticed one thing ,that this happens when i change my sleeping routine,meaning that if i usually wake up at 9 o'clock if i wake up at 12 ,it will happen and will last for 1-5 days..i also experience something else when i feel this pressure on my head also,when it's time to sleep and i almost half asleep i suddenty wake up feeling an extreme pressure on my head but can't move my body(this is somehow called,don't know it in english)and this only happens when i sleep supinely(i hope thats the right word)and i guess it has do do with the blood going even more back of the head(im not a doctor,just guessing!)..i'm sure it's not something serious but it's very annoying..have never gone to a doctor cause it comes and goes..i guess i'll live with it for the rest of my life!

Posted By : Bprobtj - 4/12/2011 8:58 PM
paulyb said...
Hi pauly here,


I'm new to this at the moment.

I keep thinking i have a serious problem.



I get ringing in my ears all the time, and severe head pressure to the point where i think my head will explode or i get a brain hemorrhage.

I feel sick as well when it comes on, and i have it since i was 25, and I'm now just gone 29.

Ive had all the tests, heart monitors, mri scan, got several different doctors opinions but to no avail.




It has changed my life dramatically and i need to reassure myself that it is not a serious illness or something.

It comes on when i least expect it and i want to know why.

It is affecting my entire life and i would love if there was anyone else like me? My health was fine up to 25 years. Please help me to figure this out.



Worried





Pauli have you found anything out ? I am having the same problems you are describing.

Posted By : Bprobtj - 4/12/2011 9:00 PM
paulyb said...
Hi pauly here,


I'm new to this at the moment.

I keep thinking i have a serious problem.



I get ringing in my ears all the time, and severe head pressure to the point where i think my head will explode or i get a brain hemorrhage.

I feel sick as well when it comes on, and i have it since i was 25, and I'm now just gone 29.

Ive had all the tests, heart monitors, mri scan, got several different doctors opinions but to no avail.

It has changed my life dramatically and i need to reassure myself that it is not a serious illness or something.

It comes on when i least expect it and i want to know why.

It is affecting my entire life and i would love if there was anyone else like me? My health was fine up to 25 years. Please help me to figure this out.



Worried

Posted By : Pseudoridden - 6/5/2011 1:35 AM
Gosh...Im reading so many of the symptoms posted and many of the them sound like me a little over a year ago. I can truly say that I've never suffered from Headaches, but then last Jan. I started getting more and more sinus problems and weird feeling headachez and then the whooshing sound started in the ears...i saw 2 neurologists who both said they were cluster migraine headaches. Then, a few months later I had my standard eye appt. (I wear glasses). She said I had to see a opthamologist because my optic nerves were very swollen. I saw a neuro-opthamologist who had me do a MRI and a spinal tap (didn't hurt) then on my follow up appt. I was diagnosed with Pseudotumor cerebri. I had pappilidema (swollen optic nerves) my right blind spit had grown larger and My spinal pressure from my spinal tap was 38. I don't know why doctors seem to dismiss this disease so much....I believe so many migraine sufferers probably have this but are not being daignosed correctly. Once I was diagnosed I was weaned onto diamox which was taken all the way up to 1,000 mg a day. Yes, this med caused tingly fingers, feet and other body parts. But after 1 year, my palpillidema was reduced and my blind spot shrunck dramatically (I did vision field test) every month. And I was taken off the Diamox to see how I would do. Well, unfortunately, I've only been off for.1 week and im already experiencing sinus pressure and whooshng sound in ears. I am praying and crossing my.finger that.it is a true.sinus issue and the.season and not my spinal fluid climbing back up. I really don't mind taking the diamox but have been told that after prolonged use it can cause kidney stones....ouch! I am going to wait a few weeks, if this pressure doesn't go away I will contact mg doc.

PLEASE.....if you have experienced any of these symptoms, demand a spinal tap...it saved my mentality and most importantly my precious eyesight!!! I hope this post has helped those of you who have some or all of the symptoms. God bless!

Posted By : david33409 - 1/3/2012 4:03 PM
Check out Arnold-Chiari Malformation. I think that is what I have and it might explain the symptoms.

Posted By : Kelljess - 2/7/2012 11:15 PM
I am also looking for some answers. For a full year now I have been suffering with extreme pressure in my head. It feels like my skull is crushing down onto my neck. Sometimes it feels like I have a band wrapped around my head (like right now). This is definitely accompanied with migraine headaches. I was in and out of the emergency department for a couple of months on January and february of 2011 when I was finally referred to a neurologist. He did two spinals (lp) and determined that I had increased intracranial pressure or specifically idiopathic intracranial hypertension. I was. Put on diamox. When my pressure was re- tested in September where the results were normal. He took me off of the diamox at this point and put me on topamax (a migraine medication). Unfortunately, I didn't have much relief with this medication and ended up back in the emergency in January of 2012. The er doctor contacted my neurologist who basically said that he wasn't convinced of my diagnosis of iih, he wasn't coming to see me and for the er docs to treat me with migraine medications. After several doses of morphine, I was finally discharged. My husband and I made an executive decision after leaving messages with my neurologist (who failed to call me back). We decided my best bet was to go back on the diamox. I dont believe that this is the right medication for me to be on as I feel like nothing is better than taking a drug that isn't all that effective, especially when my neurologist isn't aware of it. I take a lot of analgesic on a day basis, which is not good and is certainly not the way I wish to live my life. Any advice would be greatly appreciated. I feel like every symptom that has been described on this discussion is what I have been living for a year. All I want is dome quality of life back. My poor 5 year old and my husband have to watch their lived one be in constant pain, and that's not ok.

Posted By : icemidnight206 - 2/22/2012 5:56 PM
Hi. I have had some of the same problems. The "swooshing" in my ear is not a symptom, but I do have pain at some times behind my ear. I have experienced these pains for a while now, several months, and still have not found an answer. I'm going to the doctors Monday for this. I don't have Crohn's Disease or anything, just the severe headaches. Please write back if you have found out any information. I am around his age also, I'm 16. Also, none of the medicines that you listed here seem to help either.


- Kelsey.

Posted By : HelenC - 6/18/2012 6:47 AM
Hello everyone

I was diagnosed with intracranial hypertension as we call it in the UK, the same as pseudotumor cerebri. I was diagnosed in 2008.Firstly this is classed as one of the rare diseases out there and it can often be very difficult to get a diagnosis and the treatment and care that follow can often be inadequate as not that much is known about IH as we abbreviate it here.

There are many symptoms that are associated with it, the most common being the severe headaches, whooshing in the ears and papillademma, a swelling of the optic nerves which can lead to vision loss if left untreated.

I had always had headaches but I didn't pay them that much attention or feel the need to go to the drs.I put it down to the stresses of every day life.I began getting this crazy whooshing sound in my eyes, which went all day and along with this my eyes were burning, very sore and just didn't feel 'normal'.

I ended up being admitted to hospital as an emergency and after ruling out a brain tumor they told me that it was more than likely that I had intracranial hypertension.I had a lumbar puncture to confirm diagnosis and with an opening pressure of 38, which is classed as high, I was diagnosed.My left eye was in a bad way.I had severe papilademma and I had lost some vision in that eye.As far as the vision that I had already lost, I was told that it was too late to save it.The pressure had been building up for so long, unbeknown to me that the veins in the back of my eye had 'died'.All they could do now was try and manage my ih and stop it from getting any worse.

I have been on diamox which is more often than not the standard treatment for ih.I have been on this since diagnosis and so far it has helped my eyes and helped me avoid surgery.

I actually run a very active support group on FB, with members that have ih themselves as well as many Moms to children who have ih.If any of you are interested please let me know.There is also a wonderful site http://www.ihrfoundation.org/ which has lots of info.

Posted By : E. Shuns - 6/21/2012 9:07 PM
Hello,

Unfortunately, I have suffered with these symptoms for most of my life and I am always searching for new methods and remedies. The only thing that I have found which elevates these symptoms is a strict adherence to a yeast free diet, dairy free diet. The diet is so limiting and therefore it is difficult to maintain ut whenever I make the decision to get on it and stick to it I see amazing results but the slightest little misstep and the symptoms return. Initailly when they return the symptons are not as intense but If I dont return to strict adherence to the diet the level of intesity increase.

Hope this helps!

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer