Are these symptoms of Chiari?

[serenedestiny]

Hello, I recently got MRI results back, not checking for anything specific, doc sent me to a neurologist due to dizziness, etc. Neurologist asked me questions, and decided to send me for an MRI (thinking I am having seizures).

Well, let me tell you guys about how this started for me... In November of 2015, one morning I suddenly got extremely hungry, and then weak, and then to the point that I had no choice but to lie down on the bed, and could barely respond to the questions my fiance was asking me. I just needed food. He went and got me something to eat, and I started to feel better. Well, that was day one. This has happened to me almost every single day since, though the severity varies. There are some days that are almost normal, but never completely. One day in November or December is when I knew something was definitely wrong (duh), as I got the extreme hunger feeling (which was becoming normal by this time), and my fiance went out and got me something to eat (more than I would normally eat, but I finished all of it), literally five minutes later, I was STARVING again, pangs in my stomach and all.
For years I have has headaches and dizziness and went for a CT scan in June of 2012, but never heard anything again. In April of this year is when my doctor sent me to a neurologist, and on the 12th of this month I went to have the MRI done. As I said previously I just receive my results and it says "Note is made of Chiari I malformation with the cerebellar tonsils extending approximately 16 mm below the level of the foramen magnum." I had no clue what in the world, so I went to look it up, and I was AMAZED. I have been so sad, and angry, and feel trapped in my own body, it is a strange and uncomfortable feeling, and it seems maybe all of it can be explained by Chiari.  I used to have a powerful (and according to others also very beautiful) singing voice, that is almost non-existent now. What used to come out effortlessly and clear is now a strain and shaky. I also can not hold notes for as long. This is something that has made me very sad for years, as I used to compete for talent shows and do performances, and that is not something I could ever even consider doing with the voice I have now. Could his be because of the Chiari? I've always thought it didn't make sense that I would just lose my singing voice the way I did...

My symptoms almost ALWAYS start with severe hunger, has anyone else experienced this? I have found others experience ALL of my symptoms except for the hunger...

If anyone has any insight, please let me know. I literally just found this out 3 days ago, so I have not been back to my neurologist yet, and anything is appreciated!

[selmaS]

  It took me 5 yrs, but I did conceive and have a lovely daughter who is now pregnant with  her first child....

If you have EDS you may also have a tilted pelvis or uterus.....talk to your OBGYN and look into taking mucinex....seems to have been the ticket for my daughter as it also took her 5 yrs to conceive.

[selmaS]

  I too have had the nightly runs to the bathroom....it's no fun....I was DX'd with a neurogenic bladder...and yup, related to Chiari....so do see someone about it to make sure what is going on with yours.

I can related to being frustrated and angered by things that typically would not have phased me...but it can get better......

Syringomyelia , POTS, ICP, CCI, EDS, sleep apnea, tethered cord, retroflexed odontoid.....are a few things as well as a CINE MRI to check CSF flow....

[selmaS]

  Hi serenedestiny and welcome to the Chiari forum.

The extreme hunger is not a typical Chiari symptom but it is a GERD symptom and GERD is an additional related condition many with Chiari also have.

Typical Chiari symptoms are headaches that can be triggered by coughing laughing,sneezing, a BM or any activity that straining occurs.

Balance and vision issues are Chiari symptoms many of us share as well.

Chiari doesn't seem to come alone as we are prone to both connective tissue disorders as well as auto immune conditions.....so we need to have testing to rule them all out...then there are non related conditions that share symptoms that need to be ruled out as well....MS, lymes and lupus.

GERD may be part of the voice issue...I also had this but I never had a good singing voice....but while in Church I could not sing along as my voice would disappear. I do have reflux/GERD and have had my PFD surgery for Chiari....I have my voice back.....and it no longer fads away....but I still have an occasion when it is deeper then normal.

You will want testing to see if you have a CSF obstruction, and if a syrinx was able to form....if so, this is known as Syringomyelia and a related condition to Chiari....which can cause all sorts of additional symptoms and issues.

Finding a true Chiari specialist is key and educating yourself on ALL related conditions.

Know you are not alone.

[serenedestiny]

Hello selmaS, thank you for your response. I have many symptoms, but not sure what from, they are: extreme hunger, seeing floaters, getting very sad randomly or even crying, having a HORRIBLE throbbing headache if I laugh too much or hard (like one of the worst ever) also briefly after coughing or sneezing, an off appetite (might be extremely hungry, but not want to eat, or will crave very specific things and anything else is pretty much unacceptable-very annoying), I feel a lot of anger lately and little things that would not normally make me mad really get under my skin, I have no patience anymore, I cannot stand any type of clutter now-what used to be messy to me is now dirty, I have had headaches and dizziness for years, I'm super sensitive these days (to the point that I get on my own nerves, like "what is WRONG with you?! It's not that serious... But is is..." Lol!) I have an overall uncomfortable feeling of being trapped in my own body, it is strange, and I hate it as I often have a feeling of not being able to escape...life. I cannot understand some things as well as I used to, when reading I am not comprehending as well or as quickly as I used to, many jokes now go over my head, and my memory is just nowhere to be found often times. Apparently I've forgotten whole family outings... strange.

I think I pretty much (for the most part) covered everything. So there are several things I should now be tested for now that I know I have Chiari? Oh and I also have bladder problems... Well some days I have to go annoyingly frequently, and have to about 3 times a night, which I'm not sure is a lot or not, but it seems like it to me because I'm deathly tired and don't want to get up at all lol. Again, thank you for your response, I imagine I will be sticking around here now!

[serenedestiny]

Oh and I also seem to be having problems conceiving. And due to ALL of these things, I sometimes wonder if I am crazy... ;) But seriously... Lol.