I'm an active 28 year old stuck on a couch because I can't get help or answers please help if you can

Hi everyone I'm so glad I found this site. Maybe you guys will have an idea what I can do to get my life back. I was a gym going Monday through Friday work loving (I work with animals come on now) 28 year old make up obsessed girly girl to a rotting body that's stuck on a couch stuck watching TV miserable and have to convince myself that today will be the day I will shower.  No make up no gym no driving no work I can't even go for a walk down my street  I get no exercise. I am MISERABLE. It started in August 2015 I started vomiting for no reason then last November it got so bad I had motion sickness 3-4 times a week.  Then the painful head pressure started.  I would work hiding in rooms away from coworkers to vomit to the point March 18 it got to much that I was sick and had head pressure everyday I ended up in the er.  They did a ct and found a brain tumor the size of a gulfball.  I was such in shock I was so freaking calm I acted like they told me I just had a cold and left.  They couldn't tell me anything because they were just an er.  I had to wait a month of not knowing anything to find out from a neurosurgeon that it's 85% chance it's a mengioma and he claims that it's not causing any of my symptoms that it's an "accidental find" that it's not even causing pressure.  Guess where it's located. Cerebellum. Controls what?  I'm not a Dr but I would think it would have something to do with this I'm not sick for no reason.  So I went to a neurologist.  She agreed with him.  So I saw an ent my hearing is fine (knew that) and he said everything looks good and that he's even in disbelief that it's not the tumor but he has me set up for a test anyway to make sure may 4th. But about 2-3 weeks ago the pressure started bringing in so much pain it's like a migraine but Idk because I'm not a headache person.  So to sum it up: tumor,  motion sickness like 24/7, head pressure  it can get so bad to a 10 and cause a migraine,  vomiting at times and it's hard to stop when it starts. Please please any ideas will be greatly appreciated 

-Frankie 

4 Replies

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  • Hi WindDancer,

    I was checking out this site when I saw your post and felt compelled to answer.

    My Story: I have a meningioma which was eventually discovered after 9 years of complaining about my failing hearing.  I was firstly diagnosed with a paraganglioma (an ear tumour) after 6 years by which time I had lost my hearing and one of my hearing bones.  This was removed and after 18 months it was discovered there was still part of it left in the meninges behind my ear but in the fluid.

    Apart from hearing loss and constant tinnitus I only experienced headaches, not particularly bad, pressure feelings in my face and sinuses.  Looking back I also had what I can only describe as "lightening bolts" in my head which were very unnerving.

    I have never had any vomiting but have suffered with balance problems from time to time.  I like you think there must be a problem with pressure, if you have a golf ball in your head it must be forcing other parts of your brain out of the way.  Due to such occurrences in my head I now have facial twitches, the left side of my face (which is the side of the tumour) cannot smile and my eye is always puffy and partially closed.  I have what I can only describe as "brain fog" which has now been suggested is partial epilepsy, I don't lose consciousness or have a seizure I just become confused and hear the same voice saying the same words each time, that is how I knew there was a problem.

    I can only suggest you get a concrete diagnosis, read up about it and discuss it indepth with your consultants.  This is the meningioma that sounds closest to what you have Posterior fossa meningiomas.

    The most difficult part of my life is that I also suffer with hypothyroidism which can mimic virtually all the same symptoms and it might be an idea to see if this a problem for you too.

    I hope my description of symptoms will at least alert you in case you feel anything similar.

    Good luck with your problem and try and get help for your motion sickness, like you I believe it is very much connected with the tumour.

    Please feel free to message me anytime I will try and help if I can, at least I can be there to listen to you.

    Iphoenix xx

  • Thank you so much for your reply!  I'm married to my love and my best friend and yet I still feel alone in this. I am so sorry things got to where you are.  I have severe pain in my head everyday it comes at different times or I'll wake up with it and my neurologist told me its unrelated because the brain doesn't feel pain.  My neurosurgeon told me my tumor wasn't pressing on anything so the pressure in my head that makes it unbearable like someone is taking a F150 and running it over has nothing to do with my tumor.  None of my symptoms do. I did however get pcp to give me an mri prescription so I can have it early and try and get a second opinion. As for hypothyroidism I'm sorry you go through that my mother has it and indirectly I'm monitored for it since I have pcos and apparently I'm negative so far.  Tomorrow I have a test with an ENT to see if my nausea motion sickness and vomiting etc. Have to do with the middle ear possibly. He even thinks it may have to do with my tumor but we'll see.  Yay for a 3 hour long test! He says that it made to make me dizzy and I could get sick.   Great I don't get that enough 24/7. Anyway hearing your story just pulls on my heart strings. I know doctors are supposed to be smart with their degrees and all but it would be nice for them to listen to their patient  and think outside the box for a second. How else did science/modern medicine grow?  -WindDancer

  • Hi,

    I've just read your post and you may now have a answer but if not, My story is being ill for the last 14 years, various symptoms of headache, pins needles, muscles aches/pains, feeling exhausted all the time, bowel problems. I was told it was fibromyalgia/ ME

    After I had 2 epidurals during my daughter's birth that only worked on one side of my body, eventually had complete spinal block I went downhill quick.

    Severe headache, fainting, dizzy spells, vomiting, laid on couch like you, no life. My periods stopped had lots of blood tests, was discovered I had no hormones at all. Sent for brain mri to look for pituitary gland tumour.

    Next day was called into hospital and told I had Arnold Chiari Malformation type 1.

    Your cerebellum is pushed into the foramen magnum, in my case genetic, small skull, so had huge build up of csf in my head, needed major decompression brain surgery.

    Had been mis diagnosed, and epidural had made it worse, that's why they only worked on one half of body, the anaesthetic couldn't get through as my cerebellum was in my foramen magnum, which was preventing it from flowing through as it should.

    Also suffered complete pituitary gland failure as it had been squashed by the csf (cerebral spinal fluid) and 6 months later was also told I had Elher-danlos syndrome which is connected to my Chiari.

    But if your tumour is on your cerebellum it is causing symptoms very similar to mine and if the cerebellum gets forced through the Foramen magnum, because of lack of space it creates the pressure headaches, sickness, fainting.

    Look it up on Google and ask them to check it on your mri.

    Hope you get a solution.

    I was misdiagnosed for 14 years, and from the epidural to the surgery it was 7 years, if the docs had questioned why the epidural had only worked on half my body I would not have the brain damage I have been left with.

    Good luck and I hope you get some answers, it can be a very lonely place, when you know something is really wrong, but the docs tell you, it's not related to that. I had it for years, I knew my symptoms were more than what they had diagnosed me with, but you go along with what they say.

    If you need anymore info or help, I'm here to help if I can.

    I hope you get the answers you need.

  • Hi, I was reading this stream of post and though my I would contact you as you have what I have just had a second MRI for. The first MRI found a bit of my brain is further down so they wanted to do a second test to see if it is chiari or something else. If they do find it is chiari would you mind if I contacted you to see how you have found surgery etc?