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sjdjnd20
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/16/2011 12:34 PM (GMT -6)   
Hello, I am new here. I am hoping to get some professional advice or even support from others. Bare with me, this may get long.

In July of 2009, I started to experience symptoms of something that has been a long frustrating battle that has only worsened! The first symptom I experienced was a falling episode, I was at a rest stop and started walking across the parking lot and suddenly it felt like the ground was moving in a wave motion..I lost my balance and stumbled quite a bit before falling, I also had a dizzy sensation during this attack. I experienced a few more attacks very similar to that one within the following weeks. I then went though a period in which I had no symptoms at all. I then started to get a tingling/numbness in my upper left back, this became very bothersome, but Iet it go.

In January 2010, I then experienced my very first episode of Vertigo, and this was very scary, it happened in the middle of the night, waking me from a dead sleep, the room was spinning and I started panicking and woke the entire house! (I had never experienced something like it before), I then of course had several episodes after that, all in the middle of the night, it got to the point that I would try to get up and walk and would end up sitting down in the middle of the hallway crying my eyes out. These "episodes" prompted me to go to the doctor and from there I was referred to an ENT specialist. I went through all of the balance testing, it turned out that I had a right ear vestibular weakness, but one of the tests(the one where you follow the red light with your eyes) indicated that I may have a brain dysfunction,because my eyes jumped ahead of the target instead of following it. I had the jerking eye movements with the test where they blow hot and cold air into the ears, and no dizziness when they did it with the right ear(which you are suppose to have dizziness). I was sent for an MRI, which came back negative.

My numbness and dizziness have gotten worse over the course of the past year and the numbness has spread, I now get it in my left hip , the left side of my face, my tongue and my lips, and my entire back rather than the upper left only. I started to experience headaches(which I have a history of migraines, from my teen years, I am 27 now.) They had been non existent until now. I then started to see a Neurologist. He examined me and determined that I have a right sided tilt to my head, I cannot pass the test in which you have to walk in a strait line heal to toe, I just fall to the right side. While looking behind my eyes the doc said that I needed to go off birth control pills because I had "possible pseudo tumor cerebri" And I was diagnosed with Vascular headaches. The problem is, I was having the symptoms BEFORE I got on the pill and am still having them after I stopped the pill.

I will also note that I was sent to Physical Therapy and they could not trigger the vertigo until one day the therapist pressed on the back of my neck just under my head, it triggered the vertigo and nausea as well.

I recently started to get sudden headaches that feel like im being punched in the back of my head, these occur very frequently and usually are on the left side, they only last a few minutes but occur several times a day, several days a week, the last one I had, I was working and it made the vision in my right eye almost completely go away and I felt like I was about to pass out. These headaches cause me to grab my head and sometimes yell out, they are very painful and very sudden. Im not sure what to do, if I should see another Neurologist for a second opinion or go to the same one and ask for another MRI or some other kind of test? I am a single mom of 3 kids and they need me, and its very disabling, I just want to know whats wrong with me..help!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 1/16/2011 2:39 PM (GMT -6)   
Hi, Welcome to Healing Well. So sorry to hear about what you have been going through. Sounds like to need to continue seeing an ENT Specialist, and you need to see a Neurologist who is a Headache Specialist. You may need to travel but it will be well worth it!!!

I have every sympathy for you as a Mum, I brought my son up alone he is now 22, when he was a child I was not properly diagnosed and did not get the right treatment for my condition for many years, it was a very tough time.

I would point out that we are all sufferers here and can only speak from our own experiences, we are not Docs and cannot diagnose. Please try and get yourself to a Neurologist who is a Headache Specialist so you can get the help you need - I am so glad I did!!!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/22/2011 12:41 AM (GMT -6)   
I'm sorry to hear you've been having such a difficult time.

I agree with everything Annuk has said. Definitely get yourself into a good headache clinic. And if you're unable to get satisfactory answers from the ENT, it may be worth getting an opinion form a neuro-otologist.

Best of Luck!

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/22/2011 2:21 AM (GMT -6)   
Actually I disagree from personal experience and medical training. I would get a full pannel CBC/Chem20, White Cells, Red Cells, Vitamins, Everything in bloodwork. I'd look for an autoimmune disease such as Hashimotos or Wegener's or any autoimmune disease that attacks your own body. As for the trigger point (where they were able to make it happen in that spot) I'd want a full mri with CT scan to look for inflamation, tumors, etc. I would be working with a teaching hospital as they have the lastest trainings and technology. I would be seeing a Neurologist, ENT, Immunologist, neuroimmunology, NeuroSurgery doctors as a team case and be having them all discuss your case and work as one.

Now Mods, I'm sure your more than likely thinking this is all off medical training. I can assure you its not. I have autoimmune diseases (like hashimotos and wegeners, I have a tumor, I have a vitamin defency, I have a rare form of inflamation called Necrotizing Gramultous Inflammation. I stopped full time work and switched to on call when I got so sick two years ago. This person reminded me of me. And that is interested-very interesting. I'm a walking medical baffle case, and used to a roomful of doctors on my case and figuring me out. You put me in a pharmacy and I shock the pharmacist... I'm a diabetic asthmatic allergic to salicylites aka if I need anything over the counter I need a pharmacist with me, because I just made 98% of the entire pharmacy shelfs unsafe for me to take. *whispers and don't get me started on all my allergies lol*
Don't Care Bout Nuffin No More, Guess I shouldnt even be in this world
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