what does a chiari headache feel like?

[kricklekrin]

I've had a headache for a month now, happens a lot.  Comes and goes through day.  Constant dull pain at back of head, sides and top of head.  Feels like my heads being squeezed.  My ears feel full and I get sharp pains that come and go.  I feel like a dry piece of chicken is stuck in my throat.  I have taken Loratadine for a couple weeks thinking it's allergy related or sinus.  I don't have cold symptoms.  Nothing seems to help.  I tried all of the over the counter headache meds.  My teeth hurt, and I have numbness and tingling in my extremities.  

I'm having a hard time taking care of my family and house.  I really think I'm beginning to get crazy from the pain.  
On top of all this, I feel like I'm going to throw up all the time.  

UGG..................................

Feeling sorry for myself again:(

[selmaS]

  Hi and welcome to the Chiari forum,

Yes, bowel issues have been addressed, I have IBS so I go back and forth btwn having constipation and not being to go newhere as I keep going...the bowel and bladder issues is more common for those with both Chiari and tethered cord, but those with just Chiari can have them as well.


All the symptoms u mentioned are typical of Chiari.....

What u will want to do next is to get a CINE MRI to see if u have a CSF obstruction and over crowding....a MRI of ur complete spine to rule out syringomyelia, tethered cord, disk issues, and then testing for related conditions like sleep apnea, ICP, POTS, ehlers-danlos......as they can affect how u feel pre and post op should u be considered a surgical candidate.

Just know u r not alone.

[Shalacole]

I just found out I have chiari its at as 8mm. I have bad kneck pain and pressure in my head everyday and,my head hurts everyday all day and feels weird and my temples and in behind my ears feels like I get alot of pressure. I hurt in behind my eyes sometimes too and sometimes my eyes get really red. I get ringing in my ears I have poor balance and something I've never heard anyone say very bad diareah.

[emza1910]

hi, ive jus come across this post late but still thought id comment.. when i first read this sooo sounded like id wrote it - my headaches would normally pop up last two days max but for the last 6weeks or soo now the headache/neck ache jus doesnt seem to wanna go away. my back has been playin up too since me head started and also i sooo know that drugged up feelin havin taken nout! my eyes seem to be more sensitive to lights/sunlight and now even hav to sit watchin telly/on being on me lappy with me sunglasses on as it takes away the glare that my eyes jus cant handle and which can bring on a seizure.. me fella was laughin hes head off last night as i was playin a game on hes laptop with me sun glasses on. i told him though that i feel like im goin crazy, i feel like i wanna cry the pain out of me but know its only guna make me worse. i kinda get the feelin though that my fellas not believin me though, as hes comment the other day was ' tramadols should ease the feelin, should numb it.' and well like most men ya cant tell em any different and well didnt wanna row over it. i tend to try and hide alot of my symptoms which i feel is gettin me down a little more recently as im tryin so hard to keep my house goin, sortin kids - ya know every day things together but even those are harder at times. i really do feel like jus lockin meself away in the cupboard.

sorry i babbled on then.
emza

[kricklekrin]

Good morning,
Still in Milwaukee.  Saw Dr. Heffez yesterday.  To answer questions about him replying, yes.  He himself did not reply, but Renee (scheduler) called immediately and talked to me and added my concerns to his file.  

He said my situation is complicated.  My physical exam shows some abnormalities, and my symptoms are in line with Chiari.  

He showed a lot of frustrations with the doctors I have been seeing for my possible seizures and headaches.  He does not believe I'm having TIA's, but most deffinately hemiplegic or basilar migraine.  He stressed the importance of these being controlled and was visible upset that I'm my local neuro does not have me on meds for these conditions.

Before surgery, he wants to see how meds control these conditions.  I looked up these types of migraines, and it's highly possible with my symptoms and ER visits that this is what I'm dealing with.  My R-tonsil and left vertebral artery is squeezing my medulla, but he is being very causious about surgery until I'm treated for seizures and migraine successfully.  Once this is done, wants to then discuss symptoms of Chiari.  

I'm thankful for how causcious he is being, but frustrated because I know that my local doctors have not shown great concern for my possible siezures and migraine.  There has been no followup after ER visits, hospital stays, or doctor appointments.  I have spikes and waves on my EEG's, and Dr. Heffez says that this is abnormal and my description of episodes are clearly partial seizures (Temporal lobe spikes and waves).  

I was taken off seizure meds my last hospital stay, and not put on any other meds to control this.  I made an appointment to talk to neuro after my hospital stay to go over my test results and EEG results.  My appointment was disturbing.  The doctor was visible frustrated with my questions and reached over and grabbed the back of neck, pushed really hard and told me everything I'm experiencing is migraine and not Chiari.  He did perscribe someting, but I began gaining a lot of wieght and it was not helping symptoms.  Still no talk of follow-up.  

I'm extremely frustrated, Dr. Heffez recommends a Migraine specialist.  I have seen 2 of them without getting proper treatment.  When I make an appointment with another, I will be called a hypochondriac, and my report will read:  If patients continues to show too much concern about symptoms, may need to see therapist.  UGGGGGG

[selmaS]

Hi...hey, I wish I had known u were having ur surgery....u may have mentioned it, but u know the chiari brain, if it is not on the surgery thread, I tend to forget.....did I know??? ugh

I am so glad to hear from u...and glad u r sleeping.....that was the one thing right after surgery I noticed as well...could be med related, but oh so welcomed : )

Sending prayers for ur swift recovery....and I also pray u pop on again and keep us posted on ur progress : )

Thanks for an update : )
Stay well

"selma"

[LauraSue49]

I feel for you!  I just had the surgery 7 days ago.  Had it endoscopic less invasive at Cleveland Clinic by Dr Di.  He has a 6 month waiting list.  But I am 50 and had been treated for MS for 10 years until I nagged them to look into the Chiari knowing that I had it.  Can I say I'm great right now.  No it's only been 7 days but it is the fiirst time in 20 years I have slept thru the night and already thats a big sign of hope.
Best to you  "I Wish You Well"

Hi Selma!!!!

[taylapj]

When I get the onset of a headache I know I have to lay down straight away the pain is incredible, I can't lift my head at all and I find wearing sunglasses helps a little cause lights or flicks make it worse.

[selmaS]

oh ok...yup it can let the best of us down at ne time...lol.....


Did he reply?

Unfortunately I have 2 more surgeries looming in front of me, so yes I do, but until I have the next 2 issues dealt with it is diff to know just what will dissipate after those surgeries.

I do feel better than b4, but this whole thing changes ur whole life....we do need to adapt.
Not saying it is easy....or even what I would want, but, it is what it is and I do my best.

Stress will cause me to feel worse...also I still get times when I just can not sleep.....
I get HA's, occasionally balance issues.

But, I have not had vertigo, or a drop attack since...and those 2 were the worst of my many symptoms.

"selma"

[kricklekrin]

Ah, the chiari memory:>  I do have a chiari specialist.  At the Wisconsin Chiari Center.  Dr. Dan Heffez.  

I'm so embarrassed.  I emailed him a frantic email after having such a pressure build-up in my head and throat.  I didn't think I was going to catch my breath.  Again, the scary part of chiari.  Not knowing if the symptoms are going to kill you.  ER or NOT?  If I never see another ER, I will consider myself blessed.

Do you still have symptoms after surgery?  If so, why have the surgery.  I suppose to prevent more problems...

[lu7997]

Well I don't think u could have described my own personal feelings much better    That sums up my chiari head aches.   I sure hope u feel better soon.   One thing I do that made such a difference is I use a kids travel pillow to support my neck and that seems to help things from getting worse as the day goes on.

[selmaS]

Yes I would get the drugged feeling with no meds.....
ear fullness is another chiari issue......it feels like there is something actually blocking ur ears....so hearing can be impaired.

I pray u get some answers from ur drs...sorry I can not remember if u have a chiari dr yet.

"selma"

[Jennyfoo]

And yes, I get the drugged, disoriented feeling. I'm on oxycontin, but it doesn't make me high or feel anything. I've been on the same dose for nearly 2 years, off and on, having tapered up and down as needed. But when my head feels so plugged up, so much pressure, I feel almost high, like they made me feel when I first started taking them or increase my dose dramatically. It's weird.

[Jennyfoo]

Yup, you described a chiari HA quite well. I'm in the same boat. My headaches used to come and go, I'd get 3-4 a week, or mild ones daily, but now they're severe, daily, and debilitating. I always have a headache, at least a 4 on the pain scale. The severity increases and decreases throughout the day. They hurt at the back of my head, radiate outward into my eye sockets, temples, forehead. When it gets really bad, I get stabbing sensations in my eye sockets, back behind my ears, in my temples, and sonetimes along my jaw line. Those stabbing sensations are a 10 on the pain scale. My head feels like I'm 50 ft underwater. I hear pounding pulse in my ears. Just moving my head on my pillow is agonizing. Turning over in bed will result in severe vertigo. I'll feel like the room is spinning and like I'm going to fall out of bed. I've had one of these horrible severe headaches since Sat night. I've been unable to do anything, trying to sleep all I can. It's been pure misery. I've thought about going to the ER on many occasions, the pain is that severe, but I know they can't really do anything for me, and my co-pay is horrendous.

Today has been a little bit getter. I'm hoping this isn't the new norm. The headaches, dizzy spells, nausea and vertigo have progressively gotten worse over the months. I'm so tired of the waiting  game. I hate HMOs! I hate misinformed doctors who know nothing of Chiari. I hate living in this one of pain. I'm not living my life any more, I'm barely surviving; holding on. My family and I deserve so much better than this.

TTFN,
Jenn

[kricklekrin]

I guess I was hoping it did not sound like a chiari headache.  I see my neurosurgeon in the morning and I'm trying to find a way out of surgery.  

Do you ever feel really "doped" up?  I don't do drugs, never did, but I feel like I'm on something without taking anything.  

I just had a scare and thought I wasn't going to catch my breath.  Sudden pressure in my head and throat and could not breath.  I don't feel right at all, I'm very concerned.  My hearing seems to be off.  

This can't be good.............:<

[selmaS]

Hi..well u described a chiari HA very well...at times it can be very painful that u r over sensitive to lights and sound..

I used to say there were times it felt as tho I had a vice tightening around my head...I didn't dare laugh, sneeze, cough or...u know...lol.....it just added to the pressure and pain...as in bending over....

It affects our moods, and our emotions.....

Vent all u need.... : )

"selma"