Do You Have Vertigo and Head Pressure, Too?

[Shaoi]

Hi. I was diagnosed with vestibular schwannoma in October 2009. I have a long story to share and do not know where to start. Is there anybody else out there who experiences vertigo and head pressure 24/7 like I do? I look forward to talking to you. Thanks.

[sues1953]

Hi and welcome to this forum    We are so glad you are here.

I have not had surgery yet but yes I do have some vertigo and some pressure in my head.

Please share your story there are so many people here to listen and comment we all want to help.  Have you had surgery yet?

Sue in Michigan

[Lizard]

May of us have gone through the same symptoms, and I also have intermittent vertigo/imbalance problems post surgery as well so you are not alone.  Please tell us your story and if you have a surgery date so we can make sure to get you on the calendar.
Look forward to hearing more from you soon!

Liz

[Shaoi]

Oh, wow. Thank you for responding so fast and for the warm welcome.

Let me share my story with you.

August 2009: I started having episodes of mild vertigo which I dismissed as a result of lack of sleep from working very long hours as home-care nurse.

September 2009: I had to call out of work because the vertigo was much worse and I remember having a lot of head congestion at this time. I went to the ER where I was given meclizine (anti-vertigo medication) that did not help me at all. The ER doctor referred me to a neurologist and an ENT specialist. These specialists separately diagnosed me with "vestibulitis" and "dysequilibrium". They prescribed me medications that only worsened my vertigo because of the dizziness as a side effect. I was not happy with how things were going at this point so I went to see other ENT specialists for second- and third opinions.

October 2009: I did an MRI and was diagnosed with vestibular schwannoma (4 mm, left side). My ENT specialists prescribed more medications that did not help me so they eventually referred me to a neurosurgeon and/or neurotologist. I did just that. The AN specialist (a neurosurgeon) I consulted in New York told me I have a very small tumor, that I do not need surgery yet, and he did not believe my vertigo was caused by the tumor. He believed, however, that my symptoms were interfering with my life. I felt unsafe to attend to my patients so I applied, and got approved for, temporary disability.

November 2009: My neurotologist prescribed me Effexor to help relieve the vertigo but the side effects were terrible I had to stop taking it.

December 2009: My neurotologist discussed surgery with me. He said that my tumor was very small but I was very symptomatic. He was convinced that this was our best option; however, I need to resolve my sinus problems first.

January 2010: I underwent endoscopic sinus surgery which I hoped would relieve me of my head congestion.

February 2010: I was wrong. My congestion just worsened. Not only that-- my vertigo is also very, very bad. The only time I do not feel my symptoms is when I am asleep.

March 2010: I consulted another neurosurgeon in New York City. He prescribed another MRI to check for any significant tumor growth before he could make the treatment decision. I asked him if he could prescribe me any medication that could help me in the meantime but all he said was, "I'm sorry. There is nothing. I wish I could help all of my patients." Meanwhile, I am just at home waiting for my next MRI schedule.

I am very frustrated and desperate for help. I look forward to the day when I am my old self again.

[Lizard]

Thanks for sharing your story, looks like you've been through the ringer so to speak.  Hopefully your MRI will not show too much growth, but knowing some growth will show the Dr's that these symptoms will probably continue to increase.  If they do not recommend treatment I would go get another opinion, because your quality of life is suffering.
Good luck and keep us posted!  Hopefully your MRI is sooner rather than later.
Try to stay positive I know its hard, but there is a light at the end of this tunnel!
Liz

[kiwi]

I have a few days before surgery and my head pressure is really bad this week.  I have been experiencing nausea and vomiting and I am so excited to have my tumour because I cannot stand the pain any longer.  I have been prescribed codeine to help with pain.  Sleeping is the worst for me, the pain wakes me up.  I read somewhere that the headaches at night are cause by te intercranial pressure from the tumour.  Lying in one spot for too long.  Instead of reaching for the pain killers at 5am I switched position and it relieved most of the pain.

Jacqui

[Jim Scott]

Shaoi ~

Hi - and welcome.  Thanks for sharing your 'AN story' with us.  However, I'm sorry to learn of the intense vertigo episodes you're struggling with and I certainly hope that you can soon undergo either irradiation or possibly, surgery to find some relief and 'get your life back'.  Feel free to seek information, advice and 'vent' when necessary.  You're among friends here and we understand the frustrations you're dealing with.   We want to help and support you any way we can.  Please consider the ANA forums as a resource.

Jim

[Lizard]

I'm so sorry to hear that you are suffering worse than before, just a few more days and you will be on the road to recovery.
Good luck

[Shaoi]

I am so thankful to have found this forum. I do not feel alone anymore. Now I can talk to people who have actually experienced my symptoms.

Sue, I have not been scheduled for surgery yet. I am having another MRI next Thursday. I'll update you with the results.

Liz, thank you for the advice. Yes, I am doing my best to think positive every single day even though it is very challenging. My family needs me and that is all I need to keep in mind.

Jacqui, how frequent do you get the head pressure-- also 24/7? I have occasional nausea also, and that is how I know my vertigo has worsened. I used to have migraine-like headaches and peri-orbital pains as well. I remember waking up with headaches before, too. Thankfully, I have not had any major ache in the past month-- just a lot of head congestion and vertigo. My vertigo is the "rocking boat" sensation, not the "spinning room" type.

Jim, thank you. I cannot wait to get my life back. People like you inspire me to get to that goal.

[kiwi]

Hi Shaoi

My head pressure is 24/7 at the moment and is driving me crazy, it hurts so much now.  It use to be just every now and then but seems to have increased a great deal over the last week.  The worse part about it is when the pressure increases I lose sight for a second in my left eye which is my AN side.  I dont really suffer vertigo but I have had a lot of balance issues and I hope they will get a bit better after surgery.  The nausea and vomiting arrive first thing in the morning when I wake, usually when my headaches are at their worst.  Anyway not long to go for me and Im so excited that I am having surgery......yes weird but I have spent the summer here and the heat in pain and I feel like a prisoner in my own home so I cannot wait to start getting better.

Good luck Shaoi

[shanarann]

I too have a lot of head congestion. I just figured I had allergies. Sometimes the headaches put me in bed, but they are not severe all the time. I also wake up in the middle of the night and have to move my head position because the pressure is so great. Interesting I NEVER thought this had anything to do with my AN.

[sues1953]

Thanks for sharing your story.  I was diagnosed a little over three months ago, my only symptom being numbness in my tongue.  Since then I am feeling some vertigo and pressure and the ringing in my ear.  I think the ringing was always there I just didn't hear it.  Weird huh?

You should have the results from your second MRI soon, hopefully they will be able to tell you more.  I saw another Dr. this past Tuesday and he told me if I have a second MRI they can really zone in on the tumor because they know what they are looking for.

Please let us know.  Good Luck!

Sue In Michigan

[Sue]

Hi Shaoi,

Welcome to the Forum.  Let me just say that it's been exactly 4 years ago that I was diagnosed with my AN.  And I found this forum at that time and have been visiting here since then.  I certainly haven't read every post on here, but enough to know that people, when they get this tumor, can have so many variations of symptoms that it is almost unbelievable.  Sometimes an AN tumor will grow to 4 cm and that person is not aware that they have anything wrong because no symptoms or mild symptoms that are ignored, have caused no trouble.  Some people have these tiny AN's and they have immediate problems, usually balance.  A lot of people go through the whole sinus thing before a proper diagnosis is made.  My ENT missed the class on Vestibular Schwannoma, I guess, because he did not diagnose me.  I had the "fullness of the ear" thing for several months and about drove me crazy.  Thankfully, it went away.  Why, I don't know...but I'm glad it did.  I'm going to go out on a limb here and say that for the most part, the fullness, if this is what you have, does gradually go away over time.  That symptom is not usually a permanent thing.  What can be permanent is tinnitus and hearing loss.  If your AN get's involved with your trigeminal nerve, then you can have permanent facial numbness, the burning tongue, a salty taste in the mouth.  For some reason, which is beyond me, doctors will often dismiss our symptoms as not being AN related.  If you want to plow through my story, the link is below.  I remember having some vertigo issues back when I would have had a baby AN.  It was a quick episode and I didn't have it checked out.  But I know, I just know, that's when my AN was small and it caused it.  From then on, however, my brain started adjusting on it's own and made allowances for the damage on my AN side.  But sometimes it's just not that easy.  If you have surgery and they cut the balance nerve, it might jump-start your brain to compensate.  

I hope you return to your old-self too, but know that something will be different from now on.  Many times on here, one of us has said that AN's are the gift that keeps on giving!!  And as a nurse, you probably know all of this, but there is a great article on how the balance system works and what all it affects when it is disturbed.
 
http://www.hearinglosshelp.com/articles/balancesystem.htm


Hang in there kiddo.  We want it to all work out for you.

Sue in Vancouver USA

[lawmama]

Shaoi,

Vertigo was my presenting symptom when my AN was diagnosed.  I was convinced I had a blood sugar issue or something because I was so dizzy that I would get nauseous (it felt like sea sickness).  When my doctor sent me for an MRI, I thought he was crazy.  Turns out, his hunch was right-on.

I remember how miserable it was to suffer from vertigo, so I have a lot of sympathy for what you are going through.  I didn't really find anything that helped my symptoms, so unfortunately I have little in the way of advice.  I had the "spinning room" type.  I elected to have my tumor surgically removed and although my balance is not 100% yet, the vertigo and constant spinning sensation is gone.  It has been a relief.  Of course, my surgery left me SSD on my left side and that has brought new challenges.  Still, I am very thankful for my outcome and for the spinning to stop.

Whatever you choose, I wish you the best of luck. An AN diagnosis is scary, but at least you now know WHY you are experiencing the vertigo.  I can't believe everything you went through!  I am so sorry that you had to deal with misdiagnosis for so long.

Lyn

[Mom of 3]

I've never posted on this board, so I hope this works out. I too have vertigo and head pressure.
I am 38-yr old and was just diagnosed last week with an 8mm acoustic neuroma. I have been treated for Benign Positional Vertigo (BPPV) for over 4 years. The room spins some weeks, but most of the time I have forehead and nasal pressure, fullness between the ears, and dizziness. I have some good weeks, and then I go through weeks of this. Recently, it has gone on for 3 weeks straight which finally warranted the MRI.
I have seen 2 neuro doctors and both are telling me these symptoms are unrelated to the AN. I have been doubtful of that until I read your post. Currently I am being treated for vestibular migraines as we have not chosen a therapy for the tumor. Of course I would do the surgery tomorrow if meant relief from the head pressure/vertigo.

Treatment for the migraines just started. They suggested a completely healthy diet (fresh fruits/vegetables mainly) for one month. No caffeine, aged cheeses, chocolate, cold cuts. If I don't get relief after 1 month, they prescribed some antidepressant that re liieves headaches. I just started feeling a little better today than I did for the last week. I'm not convinced of the diet. I think it just comes an goes. I still have the fullness in the head today, but the vertigo is subsiding.