Newly diagnosed (introduction), night headaches anyone?

[zygy]

Hello... I found out about my Chiari in October of last year.  Told by my neurologist I have a 6mm herniation.  I was sent to the neurologist because my primary care doctor had no idea what I was talking about when I described the pain on the back of my head as feeling like someone dropped a car on me.  I have a history of Migranines, Hypothyroid and passed out five years ago and hit my head and twisted my neck in the fall and that was when the cough headaches started. Slowly little things seemed odd but not enough to really worry about.  About a year ago things started to get worse with the cough headaches happening easier and more often, finally to the point where I needed an answer.  Since my October apt. I am now getting horrible night headaches and don't know if anyone else has these or not?? Almost like a migraine but a lot of the time my migraine meds don't seem to help, for some reason standing up seems to help... that is very unlike my migraines.  I am going back to my neurologist on Tuesday and am ready to fight for some answers but it sounds like all of us are going crazy trying to get answers.  They are telling me it is nothing to worry about but recently I have now added a high pulse and some weird heart "thumps" to my list of strange things.  I am frustrated that every time I laugh I end up hurting.  I am sick of the ringing in my ears that drives me nuts and the sore neck I have had for five years!  I am thrilled to have found this forum full of information.  I have found a Chiari Neurosurgeon only about two hours from where I live and I am guessing my next move is to get my information and have it sent to him to get a second opinion.  I don't think though that at this point I am someone that needs surgery, I am just afraid to end up being that person.  So, that is where I am at!  Since I am so frustrated by these night headaches I was curious if anyone else has this going on also or if maybe this is something else to try and figure out??  

[selmaS]

Well roller coasters r on our to avoid list.....and it makes sense once u know what chiari is and where it is located it is all head and neck.....

in addition to the list of chiari specialists which I must say research....(not all may be true chiari specialists, but were NS that the members here went to and liked.) we also have a list of activities to avoid...please see our Health Pages here on MedHelp...u will also find symptoms for chiari, syringomyelia and Ehlers-Danlos......

Oh and refrain from the chiro as manipulation of ur neck at this juncture is not a good thing.

So glad we can be of help and support !
"selma"

[zygy]

I had not read your post before I posted last time :)  The doctors name is Scialabba and he is in Glens Falls, NY.   I plan to contact him once I have my neurology apt. next week.  I would at least like to think I have a doctor that will track things for me!  It is very annoying that when I play with my kids and the most fun times in life are the times when I have the most head pain!  I know I just have to get used to that idea but I suppose I need a bit more time!

-Zygy

[zygy]

Thanks so much for the warm welcome!  It is nice to find a place to think and vent, I am still adjusting to the word "Chiari".  Still seems so odd that I had never even heard the word before!  When researching my strange head pains, that I now know to be the cough headache, I came across Chiari... I actually printed out the page because I really connected to the symptoms, then feeling like I was just crazy I put it in the garbage.  You can imagine my surprise when my Neurologist called and said "Chiari".  

I have not had any other tests done other than the MRI, I do believe my only hope of that is going to be to go to the neurosurgeon.  I am going back to the neurologist only out of respect and I am hoping to hold my ground demanding more information.  Luckily my insurance allows me to go to dr.'s without referrals and I can just make the appointment.  I am hoping to see my MRI results in person and ask them why they don't want to do any further testing.  

I am also lucky that there is a Dr. on the list in Glens Falls, NY and that is only two hours from here.  From what I have read he studied at TCI for six years, that sounds like a great place to go.  I am close to Dartmouth Medical Center but it does not appear to have anyone on the list and I really don't want to waste too much time running around.  

I am going to have to try sleeping different and see if that makes things any better.  I was just leaning forward yesterday trying to look at something my husband was showing me and every time I leaned forward my ringing in my ears would get loud, I could lean back and it would go away... I started to play with it like a button... lean forward... RINGING... lean back... slowly goes away :)  Just makes you think something is odd in there!

I do not have the swallowing problem or numbness and pain in my arms and legs.  I get tingling in my right arm and leg, mostly leg and some days it does it all day long and other days it is just now and then.  It does not hurt though, just feels strange.  

When I started to think something was getting worse (this was BEFORE I had read about cough headaches and Chiari) I did my own little experiment.  Looking back it looks really stupid but at the time I was so frustrated with my Doctor making all my little issues sound so stupid that I wanted to see for myself if anything weird would happen.  So, out with my kids at an amusement park I jumped on a roller coaster... I don't even like roller coasters, I just wanted to see what would happen.  Half way through I could not even see!!  When I got off I could barely walk to get to a seat to sit down and then it was almost like labor contractions.. cough headache pains one after another for HOURS!  My head and neck drove me nuts for a week.  I could not even turn my head without causing the cough headache to grab on.  It proved to me that something was wrong and I went back to my dr.  Frustrated with me she sent me to the neurologist.  If I had it to do over I would probably skip the roller coaster :)  But it did show me that I was the only one the whole time I stood in line that got off that coaster grabbing their head!!  I spent nearly five years thinking this was a muscular pain from my neck!

I felt weird 5 years ago and went to go to the bathroom so I would not wake my family (on vacation in a hotel room)  apparently I couldn't pass out on the bed or carpet, I waited until I got into the bathroom over a tile floor, next thing I knew I was waking up in a pool of blood and someone yelling at me!  Just my husband trying to see if he could wake me without touching me, apparently I landed with my neck all screwed up against the bathroom door!  We all joke that I was toilet diving!  I had dislocated my jaw and put teeth through my lip and messed up my face a bit.  My neck never felt good again... PT (multiple places), Chiro, accupuncture, and even got braces to try and reposition my jaw!  All these years of not having a clue!  I am amazed how long so many people have gone without having a clue!!  At least you don't feel alone :)  

Thanks so much for the input and friendship!!  

[shanmomof3]

You've already gotten good info from selma and redkim. I just wanted to say Hi! Just out of curiosity what's the dr's name? Just wondering if he is on our thread here that members have used and then you could possibly talk to that member about their experience with him. Just a thought --Shannon

[selmaS]

Hi and welcome to the Chiari forum.

Just a thought, but lying down may cause a CSF blockage and could be the reason for ur night time HA's...try sleeping in a reclined position to see if that helps.

Once u have been dx'd with Chiari u should be seeing a neurosurgeon....the neurologist  gives the dx and the surgeon, and make sure the NS is a true chiari specialist and not just a NS.

The positional HA's are most likely from the tonsils hanging freely to changing position... gravity plays a big part in this......the shape of the tonsils can also play a part.

CSF blockage causes pressure and if lying down is causing that to happen it could very well explain it.

Have u been check for CSF blockages or a syrinx, tethered cord or other Chairi related conditions?...EDS...PTC....?

I am glad u found us too, sorry the reason u had to seek us out.I hope u find the info and support u seek.

"selma"

[redkim]

First, welcome to the board!

With Chiari there are no curable options.  Only treatments, different treatments work better for some people and certain treatments are more desirable to people.  I personally never went the route of pain meds, or pain management.  I decided to have the surgery.  I am very happy with my descision, some people to decided to have surgery aren't happy with the outcome.  There is unfortunately, no one fit's all treatment.

That being said, I understand the fear of not wanting to be someone who needs surgery.  That's a descision you need to have a lot of answers to a lot of questions before you can decide.  

Have you had a full spinal and head MRI?  Almost everyone on here is going to suggest that.  There are underlying conditions that can cause Chiari that need to be looked into.

Almost everyone will suggest a CINE MRI, I personally never had one because my NS said it wasn't necessary since based on my MRI and symptoms he knew there was blockage.

Everyone on this board will suggest see a Chiari specialist, which is sounds like you are doing.  That is great!

Right now is the time to find answers.  Good luck!