Im spinning!!! Help!

[Lovely101]

I dont know that anyone can help me..but im pretty scared and basically just need to talk! And would like to hear anything that anyone has to say! For those that dont remember me, I have a 10mm herniation, was diagnosed in March of this year, have NOT had surgery and want to avoid it at all costs! I have not seen  a true specialist yet as I am dealing with insurance issues and trying to pick a specialist and make time an dmoney to travel.
My symptoms since march have sucked but been live-able. I have been very careful with my activities cuz i dont understand what actually makes chiari worse.
A month ago we decided to move back to town. So for the past month  have been packing. I know heavy lifting is a no-no for chiarians so I would packa  box, leave it sit, and have the bf move it when he got home. I didnt lift any furniture either, but just the packing.. i assume the up and down all the time and al the work just killed my head after an hour or so each nite. But it had to get done so i kept at it. This past weekend we moved. we had a lot of help and again I only lifted the light things. We also had allt he cleaning of the old house to do. I tried to avoid bending over at the waist cuz that seems to bother a lot of chiarians. When I pick things up i squat down on my knees instead of bend...and i probably did that a million times! Is that bad for chiari too??
For the past week and a half i have a NON STOP killer headache! back of head, front of head, behind the eyes! and im SOOO DIZZZY all the time! Its how u feel when you have had too many drinks. i feel here, but like things are going on around me. I just sit around and spin!  When i lay down it gets real bad. When i lay on my back the world goes black. i cant lay on my back( been this way since march) However, now when i lay on my side and stomach i also get dizzy and my heart kinda races. Until i fall asleep!  What is wrong w/ me?! I cant stand this dizziness. im scared to drive even!  Did my moving and doing too much make chiari worse? will i always be like this now?  I tried to let people help me with everything but while they were workin their butts off for me i couldnt just sit there. I had to at least help some! Grr! And my NL wont see me cuz he says chiari is my NS's problem. and my NS says unless i want surgery, i should be seeing the NL! Idiots! lol   Okay... im done rambling... Im just gonna continue sitting at my desk and spinning! Thanks for reading.. i had to get this out!

[JENANDMIKE]

Im new here, was just diagnosed last week.  Although I have had symptoms for like 10 years, I never contributed them to one particular thing-  Last week, I had the worst pain in the back of my head that I ever felt in my life, I honestly thought I got shot.  No warning, was at my sons school and it came out of no where-  Rushed to the hosp 2 x;'s last week and after a million CT's, MRS',s Spinal tap, Chiari dx was confirmed-     seems i have the oposite problem as some of you-    luckily, I work in an an orthopaedic office, so my boss has a friend who is a NS and got me in the next day.  He did more scans and blood flow studies.  I want the surgery b/c I dont EVER want the pain that i experienced again, especially in front of my young kids, they had to call 911 and liseten to me scream at the top of my lungs in pain.    My NS is overly cautious and wants me to see another collegue, a neurologist, just for his insight.  He wants to make sure that doing cranial decompression os the absolute right thing to do.  Im lucky b/c Im getting into the specialist;s office within days for my appts.  Am i being to anxious to want to just ":go under the knife"     I just want my life back

[Jennyfoo]

Try Dramamine. It's helped me when I get bad Vertigo. I had 2 months of really bad spinning and swaying feelings. It did let up some, but comes back with a vengeance if I overdo it, get overtired, or am sick  I don't drive any more. It's not worth the risk to me, my kids, or the others on the road. My Hubby won't allow me to drive, even if I'm having a good day. Thankfully he works from home and can play taxi service when it's needed.  Lol!  I really should take advantage of it more; like having him drop me and my 3 year-old at the park or playgroup, but I hate "inconveniencing" him.

Dramamine can help. You can get a non-drowsy formula.

It really sounds like you need surgery, if things don't improve dramatically. My symptoms are debilitating and I'd kill to have surgery. It's taking forever to get into a NS for me. My neurologist was completely useless; the "chiari can't be causing your symptoms" and "I see no signs of intracranial pressure" kinda dr. 1 week after I last saw him, I saw my Opthamologist who found my optic nerve swollen due to intracranial pressure. She recommended surgery. Lol!

I hope things get better. Please, in the meantime, just take it easy, rest, and hopefully that will help.

[selmaS]

Hi....we r all diff as to what may trigger us or our chiari but u were deff doing more than usual for u, so I am sure that could be part of what is going on....I do know when ever I try to do more, I have a set back of a few days.....u know the old saying 2 steps forward 4 steps back....but I keep on taking them as I know I will advance at some point : )

The biggest problem with realizing when we r doing too much is when adrenaline kicks in...it gives us the ability at times to keep going even tho we r tired, we feel we can go on, but oh do we pay...so regardless of if u feel u can, try to limit what u r doing....u have to gauge it on past experience, not on how u r feeling at the moment.

I hope u feel better and enjoy ur new home : )
"selma"

[niki3350]

Really sorry you are suffering at the moment and although not experienced enought to give advice yet I can relate to how you are feeling!!!!

I get awful balance probs and have now for the past 10 years, I never feel dizzy but like you describe it as being drunk type feeling or like being on a boat you no that bobbing swaying type motion, most times it managable but at times it floors me, cant drive, and any normal everyday activity is affected as Im falling to one side all the time, shopping is mental for me as you are always turning and putting things into you trolley, and at times it me in the tolley, I look like the local drunk walking around.

I have written as like you im in some sort of flare again, I had had at least 3 good months not problem free but managable, then went away on holiday with my family, lots of lifting,packing,unpacking,shopping then active holiday with my nieces,nephews and daughter, swimming,badmington,archery etc etc, 4 days into my hol and bam sypmtoms became bothersome.

4 days upon my return and my symptoms had escalated to something I have never experienced b4, severe pain, back,legs,shoulders,head to the point of crying, balance that floored me, difficulty swallowing,hair loss, weight loss, I could go on and on.

3 months on and it settling slightly but today woke up and have severe tender neck and cannot stand up for more than 20 mins without my legs buckling.

Selma has always adviced me that in any one day im doing to much, but at present im having difficulty knowing what is to much, so its a viscious circle..  Im guessing that this is where you are at at the moment honey, so listen to your body and take it easy, give yourself time to let your symptoms settle but do inform your gp of new symptoms.

Take care
Niki x x x