Thank you so much for your message,
I was wondering if you would be able to tell me a little more about your symptoms and experiences as your the first person that seems to recognise all my symptoms and I am not sure what to put down to my condition and what to dismiss. I have had 2 MRI scans of my head and one cervical spine. Although a slight shadow on my head one there is nothing conclusive.
I read up a little on your condition which seems to be governed by headaches? I only experience these around my time of the month although they are severe. Is your main symptom the "vertigo"? This seems to be the most consistent symptom for me, with my hand tremors coming a close second. my fingers look like they are playing an invisible piano when in a resting position. The pin ***** sensations have not happened for a while, and the pains in my fingers pop out of knowhere and go just as suddenly. The itchy skin happens randomly and may get little hives which again seem to just disappear. Do you have any other major symptoms?
I hope you dont mind me asking you all these questions, but as you well know, the not knowing is the worst part.
Do have have surgery scheduled?
I cant imagine having this for the amount of time you have and my thoughts are with you
Claire
Oh dear...I just realized that I posted this in the "expert forum"- I apologize. I got my forums confused- thought I was in a regular forum. I should have e-mailed you instead. Please excuse! Thanks.
I have the exact same symptoms as you do, plus a few others. The only one I don't have is the loss of vision that you described. I have recently been diagnosed with Chiari 1, so I am assuming that this is my "answer" to many of my similar questions.
Was your MRI done on the brain stem as well as your brain? Have they checked for Chiari? I would check with your doctor to be sure.
I have had vertigo on & off for about 35 years. Some spells are mild and are always kind of "there"...others, like a recent severe one, bothers me for many weeks to different degrees. I had been told BPPV over and over, with no successful treatment or relief at all. VERY frustrating. I had given up, until recently my husband convinced me to go back to an ENT dr and see if anything has changed over the last 20 years. This new dr. sent me for an MRI- I am so grateful that he thought try something different. He said that what I was decribing wasn't really consistent with anything in his realm.
So discovering Chiari gave me some contentment. Finally- a possible answer. Unfortunately, there is brain surgery involved, but at this point, I'm ok with that. That is how bad I want to get relief from this!
My vertigo is not "spinning" either- people don't really understand when I say that I am "dizzy". It is much more of what I would call "slipping"...almost like the floor drops out from under me, and my world tilts hard & fast away from me. Followed by almost like a falling sensation. It is scary, and even though it happens so often, I never am prepared for it.
I hope that you can get some answers and relief. I am not a doctor or anything even close, but I can definitely relate to what you are experiencing and share with you in the suffering!
Best of luck to you.
Amy
Thanks for your reply, I think that the lack of Spinning is whats confusing the doctors as for me i have not experienced this. The only way i can describe the feeling is like I am Drunk and trying to walk on a Boat. It feels like the ground moves beneath me but lying down i am absolutely fine. Also something I find very strange, I can walk on a treadmill and don't seem to have these symptoms, its only when I am actually moving forwards and feels very much related to things moving around me. The more people around the worse the feeling.
I find this so hard to explain as my symptoms change every day, some days it makes me so ill I cant move, others its just the movement vertigo. The docs are investigating MS, ME, BPPV, but we dont seem to be getting any closer. In the year i have had this I have only been symptom free completely for a handful of days. Does BPPV last this long? Also the pains in my hands seem to be directly related to the vertigo?
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to obtain a history from you and examine you, I cannot comment on a formal diagnosis or treatment plan for your symptoms. However, I will try to provide you with some information regarding this matter.
When you say vertigo, I'm assuming you mean that you feel as though the room is spinning. The causes could be either the inner ear or the brain. Inner ear causes of vertigo most commonly include benign positional vertigo (BPPV), which is due to small particles in the inner ear (otoliths) that move out of place when your head is moved and continue to give signals out to your brain to keep thinking you're moving when you're actually not. These can be repositioned with simple head maneuvers, called Epley maneuvers. The symptoms often include vertigo that occurs with turning of the head, often while turning over in bed. Other symptoms can make you feel as though you are having difficulty walking because of the dizziness.
Another cause, if your symptoms are associated with tinnitus (ear ringing) and hearing loss is called Meniere’s disease and can be treated with medications and sometimes surgery. And so on, several other causes from inner ear problems exist.
There are medications we can use to help your symptoms, called Meclizine. Although I would recommend trying vestibular rehab first which will teach you maneuvers, essentially the Epley manuevers and get your brain "used to" those ongoing signals.
I would recommend following up with your primary care doctor and discussing these options with him. Best of luck.