Chiari, Worsening symptoms..

[Stroud5393]

This morning I woke up up my neck really sore and feels on fire and so does the back of my head. The throbbing pressure isn’t as bad first thing when I’m in bed. Soon as I get up everything gets worse... Is this throbbing head pressure that is in time with my heart beat a chiari thing? Please someone respond.

[selmaS]

What type of surgery are you hoping for? I can't recall if you were decompressed or not....I know how scary this all can be....hang in there and keep us posted  on what they tell you at the ER.

[Stroud5393]

I haven’t had decompression surgery yet I don’t know if they would do that here or not but my symptoms are really bad :(

[selmaS]

Trust me you DO NOT want to have surgery just any place just because of how you feel now, you need a true CHIARI specialist.....not just the NS on call......

[Stroud5393]

Well I don’t have insurance so there is no way I can see a chiari specialist so I have to settle...

[selmaS]

Have you looked into the clinical trials? I am not sure where you are located but they do the trails all over......and it is possible to get a true specialist.

[selmaS]

Hi....just knowing you have an irregular heartbeaat does not mean your brain stem is or isn't compressed...as there could be other reasons.....such as POTS which is a comorbid condition of Chiari so, until a Dr sees you and DX's you there is no way to know for sure.
Have you been to your PCP about the irregular heartbeats?

[Stroud5393]

I’ve been to the er a couple time and had ekgs that were normal but the skipped beats never happened during the ekg so it wouldn’t have picked it up.. I see my pcp in 3 weeks about it. I’ve just been progressing so fast :( I’m losing my mind because of it. My head feels like it’s constantly being hit with waves or something and I always feel woozy I use to have some good days but not anymore I don’t know what to do anymore... I can barely walk because I feel so unsteady.

[Stroud5393]

The back of my head feels heavy and weird my head feels like it’s on fire and I’m so dizzy... I don’t know why I would be progressing so fast I’m so scared :(

[Stroud5393]

I’ve also been dealing with vertigo type spells like everything looks like it’s tilting I’m so distraught :( I’m currently at the ER for these symptoms I honestly hope they do surgery tonight...

[Stroud5393]

Also for the past month I’ve been having a lot of skipped heartbeats I’ve read with the skipped heartbeats lightheadedness etc. it may be brain stem compression could it be?

[Stroud5393]

Well a little bit of an update. I was supposed to have my 6 month follow up th neurosurgeon yesterday but I had the appointment time wrong... So now I have to wait till October the 15 to see the neurosurgeon.. I wish I could say that I was better and not getting worse but the past couple of months I have progressed it seems.. The past 2 weeks my unsteadiness has been really bad I'm scared to even get up and walk because of it.. My lightheadedness and head falling feeling has gotten worse too :(. Should I go to the er about this? I'm so scared that I'm eventually not going to be able to walk on my own :(

[Stroud5393]

I keep getting feeling like my head being hit by ocean waves like a back and fourth wooziness... Every day I just keep declining I'm so scared of not being able to go to work and take care of my family...

[Stroud5393]

Has anyone had constant lightheadedness with chiari? I’m scared it could be something else :(

[selmaS]

Hi I am so sorry you are so stressed out over these symptoms and I know the ER will not be of any help to you.....so I  know it will be a wasted trip, but if it helps you feel better going then maybe you should.

I can only offer info on what I know, and all I can suggest is to try to relax, keep hydrated as that can affect how you feel....and look at your weather....we all tend to be walking barometers.....and that too can add to the light headed feelings you experience.

I used to get like I was hyperventalating just with taking....my husband had a few suggestions for me on that one....but I do understand your being worried, afraid....etc....I was too....all we can do is try to see if our activities are a contributing factor, our diet, the weather....etc...then try to avoid some of the things that may add to the symptoms.