Just Some Venting

Hi everyone. Just need to vent. I can't sleep and My head is pounding and right side of my neck is killing me My eyes are squinty and red, My vision is impared I am seeing spots and it is blurred, my back and legs still hurt too. I seriously have been in bed ALL DAY ! I havent done much today so I am wondering why the Chiari Monster is putting up such a fight this evening.....I have this odd feeling that since March My herniation has gotten bigger. This weekend I sneezed (and this is a first) and had a small bladder issue...I hate admitting that and haven't told anyone but figure of anyone you guys would understand the feelings behind it. I mean come on I am only 26 years old. This disease has got to be researched more and I think it is horrible that at the feet of several law suits of a Institue that does so much good for so many people that other people just now take an interest in our misfortunes. I have taken what I call the 1,2 punch 2 times today which is a 800mg ibproufen and 250 mg (I break my vicodin in half) 2 times today and no result when back in march that usually cleared things up. So I just took another 800 mg Ibproufen and full 500 mg vicodin. I dont know what else to do I have been using the ice pack all day today on and off. Hot showers just make my head want to explode anymore which that used to help almost everytime. I almost want to call my NS tomorrow and just ask him to put me off work till my surgery I am really having a hard time. I have been drinking a lot of water today too so I am thinking of things that trigger headaches but I think its just the chiari acting up.....Does anyone else get their symptoms in waves?

[Benny83]

Hey Devin I am completely with you past week or so I have been worst than ever seems like my body is rejecting the meds I was on and they no longer work....Pain,pounding head, vision, and vomiting is what I am going through and I cannot get a call back from my neurologist, my PCP doesn't know anything about CM so he keeps telling me to call the neurologist...Seems like a no win situation for me.
I am not taking any pain meds other than ibuprofen, I don't want to take vicoden or anything until it is a last resort I seen too many people get addicted to them and had my battle with them once back in high school when I tore my petella.
I hope you feel better soon!

Ben  

[rod44]

Hi Devin & Ben,
My experience has been of head, neck and shoulder pain along with tinnitus and dizziness and numbness in my hands and shoulders and upper back that is there all the time, I get waves of vertigo and times when I cant sleep along with other times when I sleep for days on end, during these waves all the other symptoms get or seem to get much much worse. At a urologist appointment last week he said there was evidence of bladder problems due in his opinion to the syrinx causing “interruption of nerve pathways in the spinal cord” and this was causing retention AND leakage.
Ray.  

[shanmomof3]

I'm so sorry your having such a rough time! Yes it does come in waves or cycles as selma calls them....you'll feel ok for a few days sometimes a week and then Boom your down and out! and Ray is right during that time all the symptoms seem much worse or compounded by the pain. I think you should talk to your dr about a leave from work depending on how long away the surgery is and your finances. I quit work back in May.... I just couldn't take it anymore and I was about to get fired because I couldn't do my job right.... its been tough but luckily my husband has a good job and we just had to cut out some of the extra stuff.
Also, have you been checked for tethered cord?
Hope you feel better soon!
--Shannon

[selmaS]

Hi...it seems u got confirmation that indeed chiari symptoms caome in waves or as I described mine in cycles....and it can be affected by weather changes and right now we r in a season change....

I agree with Shannon u should be checked for TC.....as it can affect the bladder as much as chiari can....

Also, please check with ur HR at work for their policy on sick time and what u r entitled to....if u qualify for FMLA.....and if u used ne in the way ur company records their FMLA time off.

FMLA has certain guidelines...however there r some open ended issues that is up to the employer. Find out what / how they utilize this federal law.

"selma:"

[n40066]

before you all say i'm crazy, there is one other thing to consider.  the effect the full moon has on us.  in people with mental health issues, the full moon tremendously affects how they feel.  my son is bipolar and i know this to be a fact.  this past week has been particularly difficult for almost everyone of us on this forum!  do you really think that is just by chance?  the full moon was on the 4th and today is the 6th.  very soon now, most of us should start feeling some relief.  remember the last full moon selma?  i had a reaallly bad time back then, too.  there may be something to this and it kinda makes sense!  the gravitational pull is different during the full moon....it's food for thought and something i personally would like to monitor a bit more closely.  just for kicks, selma, lets start a new thread every full moon.  we can start it 10 days prior and do a count down to fm day!  every day, each one of us could put a brief blurb about how we feel that day.  couldn't hurt, could it?

[selmaS]

consider it done...I will post one now so that neone can add how they felt...and u will be in charge of bumping it up on a full moon....lol.....

besides, I like experiments.............

[shanmomof3]

I think Lizzy may have something there! I mean how many times have you heard of more babies being born on a full moon or close to one.... deff has effects on that.... and your right we've all been pretty bad the past few days.... mine was all last week and especially this weekend.....Hmmmm...Sunday was my worst day...ray's too... go figure
Call her DB all you want I think she may have figured something out! lol

[tysgmother]

I sure hope Lizzy is right and this to passes.  I am tied of hurting from head to toe. and crying my self to sleep at night.  And most of all I don't like what I feel is taking advantage of my great friends, just because they understand.  

[lu7997]

as a nurse I have seen patients go through more pain more symptoms and more problems during the full moon even though there is no scientific proof of this there is a connection.   One thing I have seen more so then this and I can back it up with proof is the berometric pressure changes effect on CSF.  which I am sure you all know is what causes the symptoms in CM.  The past month has had a record of changes in weather and pressure and that is world wide I am sure this could play a HUGE part in this.  This has been one of my worst weeks ever and as far as the bladder issue........i just thought mine was cause I had three kids and that happens, never connected it to the fact it just started a few months ago.......


I hope the weather will pick where it wants to be and everyone can get some sleep and relief.  Take your pain meds too by the way.  You become addicted when you dont actually have pain and the meds work on other parts of the brain.  If pain is actually present the chance of addiction is very low.  I guess I should state this is not medical advice but personal opinion....since i am not actually aloud to give that under my liscense.
I work for Hospice and pain control is sorta my number one interest : )   hope this helps or at least is informative.

[WeddingJean]

Count me in on the full moon postings. As a child I was told several times I was a slow learner & I guess that may apply to the 'full moon' theory too. Today was a bad day for me 'cuz almost all of symptoms 'attacked' me (the wave/cycle thing that was mentioned earlier) early this morning...2 days after the full moon...see I am a slow learner (actually, I always looked at it as though I didn't march to a different drummer, I marched to a slower drummer). My balance/dizziness issues were so bad today, I had a co-worker tell me she is glad that I leave work before her because she doesn't want to be on the road the same time I am!

The weather theory is interesting too...I've never really thought about it much except during the hot humid spells during the summer. My body over the few years just cannot handle that kind of heat. Although my arthritis acts up more during weather changes...hey, could it maybe not be as much arthritis as it is Chiari? I know here in NEOhio we are coming into a cool spell w/high wind advisories & rain and my head & ears feel like they are going to explode.

[lu7997]

I am from NE ohio too : )

[Devin215]

Oh my gosh everyone, I am in much pain this morning my back and legs are killing me! I already missed 2 days of work this week though and can't miss anymore. I am gettin ready for work right mow and took a hot shower but no help...... What do I do?

[shanmomof3]

I'm sorry your having such a bad week! Hope your day gets better!
Soemtimes.... but only sometimes Icy Hot gel helps my legs and back.... don't know if it will help you but its worth a try when nothing else works!
Feel better!
--Shannon

[selmaS]

Yes topical creams like icy hot may work, but be careful.....depending on what u have already taken it is still medication and just be sure u do not over do it.

What type of position do u have?

Sorry I wasn't on b4 u went

"selma"