Intense Ear pain

[Rahe28]

Hi all. A few new symptoms started over the last two days, and I was just wondering if anyone else had/has these as well.

Intense ear pain( feels as though someone is trying to peirce the inside of my ear wih an ice pick, burns too)

Legs feel very heavy and feel like they are shaking from the inside out. Walking just from my living room to the       kitchen seems to be a bery big challenge.

half dollar sized stabing top of head pian. NOT a HA, but all of a sudden somewhere on the top of my head will immediately feel this stabbing (from the inside out) pain the intesifies and then lets up after a few minutes and then starts again....(this one is really weird.)

If I try to look down or up at all, it feels like there is a rubberband (like one of those big work out bands) pulling from the top of my neck to the top of my hip area of my back...but inside

If I try to roll my head at all...like to stretch..I hear this awful crunching and popping almost grinding sound. It also emmits INTENSE PAIN. I try not to do this but even with the Voltarn gel my neck is sooooooooooooooo stiff.


Just wondering if any of you have these or have dealt with them. I mean I have a list of symotoms two pages long, like most of you, but I really have never had an onset of new symptoms like this...not when I am already having an onset of symptoms, and I have never had any of these ...

[Mezzovoce]

I have had the stabbing ear pain for 10 years. I actually got relief from sudafed, but that caused severe high blood pressure. I can’t typically do nasal sprays, but plan to check on the headache one mentioned in this chain.  I have chemical sensitivity so constant breathing troubles and have found chlorpheniramine maleate and guaifenesin usually help with the stabbing ear pain, not this week though. I ended up seeing an ENT, paying about a thousand dollars to find out there was nothing they could do.
I have the shaky leg issue from time to time, hard to move. I have similar issues with my arms, real feeling of weakness and intense pain.
I conduct the music at my church. I wonder every week if I can keep going, but somehow, I do.
I’m so sorry for those who experience what I do, and worse. I feel so alone most of the time, it’s  hard to say I’m glad I’m not...but I’m sure you know what I mean. Thanks for sharing

[chiarimother]

Can you tell me the name of the doctor and what hospital?

[Rahe28]

Well, I am so sorry to hear that you are all dealing with these aggrivating and painful symptoms..it does however tell me what is causing it most likely !!!
Whew....I actually found a Chiari Specialist here in New Orleans, and I found him by accident when I called about somethng at the hospital and by accident reached the neurosurgery department...my mind said..ask..why not??? Turns out that even the office staff knew what I was talking about and they said Chiari right. The recepo. said  yes maam that is his specialty ...that is mostly what we deal with here. They also take medicaid and can see me in 2 weeks instead of the 2 months with the other dr that by the way has done a whopping 3 Pfd's. What a nice little surpise for the day...My hubby was actually clapping and shouting :) He was just ready fly me where ever so I didnt get the Your making it up , or its all in your head thing again. I am still going to see both of them, since most of you reccomend getting a second opininion,

[xmelax35]

I have to say yes, I have had those! The ear thing to the leg thing to that specific pain (it is what i consider one of 7 types of  headaches I get). Mine lasts for seconds to minutes and then goes away. Then it comes back again and leaves and back and forth.  My doctor gave me imitrex nasal spray incase of one of these attacks. I know you don't consider it a headache, but I have only since my regular doctor describes it as one. I would say a short fast awful headache. To tell you the truth it does not always help but sometimes it does. I think he was right when he said I should take the imitrex shots instead...just fearful of that.  I am not sure what else to say, because I am still getting them and only get worse and worse all the time (more frequent).  I get the shaky heavy leg a lot too, but they only said it and the rest is due to the chiari. I am not much help on this matter, just wanted to let you know I know how you feel.

Also when I get the crack in my neck, I know horrid pain is on the way...as it goes from my neck to my face to my eye and above. Although I get that anyway, this just makes it happen almost instantly practically. I wish you luck and hope that things get better for you down the line.

[jiggle93]

I have the smae problems with going to church. I have missed a lot lately and decided Saturday night that I was going to go Sunday morning. I got up, got showered, did make up, blew out my hair, and put on my clothes...mind you I am so exhausted at this point. Then I went to sit down and put on my shoes...and the entire butt of my jeans ripped out!  Then I ran around in a mad rush trying to find something else to wear. I gave up and decided it just wasnt going to happen!  I think learning to allow ourselves flexibiltiy in our day to day life is hard for others to understand, but so necessary for our day to day.

Does your church tape the messages or do pod casts? I know its not the same as seeing all the people, but still gets in your sermon times. Our church sounds like yours and the lights and music can really mess with me.  I have even been know to wear my sunglasses during service.

You described most of my daily pains/aches. Tho the stabbing never lasts long for me. I remember asking a co-worker to use a flashlight to look in my ear when it first started. I was positive something crawled in and was causig the ear stabbing.  Then it moved to my head. The rubber band thing too, tho it has subsided. I too feel like I look like an 80 year old trying to move about...some days are much better than others. My neck does the chruchy thing even looking side to side. Maybe like Selma said with herniation, but with mine I always suspect the C spin issues that I have. I have disc disiccation, bulging discs, and a torn disc...noticed I can no longer touch my chin to chest and look at my belly button anymore.

And as for the family...they may not understand, but i'm sure they can still show you compassion. See if they can get you some of the sermons to listen to in your better moments.
Jiggle93

[irislita]

...the singing didnt work for me anymore before surgery but it does after...u r so brave...must me difficult at the same time being mother...

[Rahe28]

TY both for your kind wishes. The whole family watched movies all day, and it was pretty quiet, so I did start to feel better last night and other than not sleeping last night...I feel a little better this morning too.

Selma, I found out really quick, when daughter tried to get me to raise my hands a sing with her, that it wasnt going to work, the singing just didnt work....
Makes it hard too since my mother in law, brother n law, and sister in law are all pastors at our church, I dont think any of them can say the word Chiari, more less understand.

Oh, the leg thing is so crazy, I feel like my legs are 80 years old (LIS)

[irislita]

I have pretty much the same symptoms as u have...the ear pain combined with daily migraine put me on my chiari journey.the leg thing is sooo anoying and the eye floaters...ooohhh hope u have good day

[selmaS]

  Aww well I am sure u will feel better even if u just rest and do not sleep...but I understand how u feel.....

My Church is not bright lights and not that loud, but I had issues going to mine as well...I lost my voice when trying to sing, got light headed....and they use florescent lights, ugh...they just really make me feel odd.

We can only do what we can, rest when we have to and the rest of them around us have to deal with it...lol...just like we do : )

  Hang in there ...I hope u get ur nap

    "selma"

[Rahe28]

Yeah that ice pick pain really stinks....it is quite painful. Glad that someone else knows what I mean by the way I describe some of these things. Your right they are like mainifestos!! I decided to go to church this morning, IU havent been in a while because I have been feeling so yucky.
I would never say that church is a mistake, but the bright lights and the loud music( I belong to a christian church with a live band) and all of the hundreds of people....ugh ...I feel awful. Terrible terrible...HA and my eyes have those horrible floater thingies and my legs feel like they are on fire. time for a hot bath, heating pad, meds, and if i can convince my babies to take a nap...one if those(if I can sleep)

[selmaS]

  Hi...yup., and I described it the same way, like I was being stabbed by an ice pick...really an awful feeling, but I know just what u mean....

Also yes to the rubber band type feeling, I had tethered cord, so I always assumed it was that,. I still get this as I have not had my  TC issue addressed.

The shaky legs is also very common for those with chiari, not all get it, but too many do.

The crunching sound could be a couple different things, a build up of  calcium, or the herniation itself getting compressed by the movement u r doing.....

I would avoid moving ur neck in this manor if in addition to the sound u have ne discomfort.

Most of us do not have a list of symptoms, we have manifestos!

      "selma"