Hx: of migraines / family has weird things wrong

[kids4me]

I have hx: of migraines that do run in family.

Used to take imitrex injections but they made me stop taking them because it caused cardiac arythmia on me.  

Recently the past 3-4 years i have not been too troubled by them, but in 2001 I had a car accident that caused whip lash to my neck and i also got a herniated disk in my lower back ? L5.   My problem is that I have been having head pressure/with pain mainly on my left side.  I do have head congestion a lot with sinuses, I do not smoke, do have sleep apnea, 43 years old / female.   I will try to explain how i feel, head pressure (feeling of over full) with back of head VERY sensitive to touch.  Left side of head especially around left ear feels a lot of pressure?  
I take Zyrtec every PM and use Neo-Synephrin Nasal Spray very sparingly to try to ease this pressure.   I will get sick (vomit) with this pain, I have tried just about all pain meds but, would like to know what you think?????    Single mother, trying to support -2- children.   I do not have medical insurance on me.   I get very,very tired a lot also.

[CCF-Neuro-M.D.-CS]

The headaches you are describing most likely represent migraines. Another possibility is that these could be rebound headaches, if you are taking pain medications for then 3 days per week. I understand that you do not have insurance, but you need to be under the care of a doctor. There is nothing I can tell you over the internet to improve things. If you are having frequent headaches you will most likely need to be placed on a medication that you take daily to try and prevent the headaches. Then a comprehensive treatment strategy to abort the headaches when they occur will need to be arranged. Lastly, the sleep apnea could also be causing the headaches, and should be treated.

You should see if there is a free health clinic in your area to receive treatment. Your local department of health or family services should have this information. Also, if you have not had a scan of your brain recently, it may be reasonable to have one. Good luck

[kids4me]

Also, my aunt went deaf in -1- ear and almost deaf in 2nd dr. here said it was because of infection not treated correctly.


I also have a hx. of abdominal stuff:   I had a ruptured appendectomy when i was -3- yrs old and since then had a couple different surgeries because of adhesions.   My most recent surgery I had -2- abdominal abscess's 1-ruptured and formed the second.   I also had diverticulities and a hole in my transverse colon.  I did not have a good day!    Anyway, they removed the abscess's and removed my complete transverse colon.  

A month or so after surgery they did a colonoscopy the big one where they put you to sleep to see your whole colon.  

I have been pretty good since the surgery, but now,,,feel as if I do not have correct muscle strength to get my stool out, is this common is their something i can do for this, and usually when i have this type of stool i do not .... feel good have belly pain, with tenderness????

[Gabriel90]

I  had a very simular experience as well as many , many others you could talk to at WACMA, or ASAP.

I was had a few weird problems in life and health and one day about 8 years back a simple whiplash accident. (others have had this (become asymptomatic from very simple things like picking up a baby , etc., etc.)

5 weeks later I was passing out and hitting the floor when I looked up, I had headaches so bad I was viomiting, and I was also stoppong breathing, (with intubation even a couple of times)

I was very luck my husband found WACMA and some leads as to where to go, since I had been misdiagnosed my whole life, and had chiari malformation.

One woman I got to know in the group had been misdiagnosed for 37 years , due to lack of knowledge in our upper half of our state.

Here they tried to force me to allow them to do a tap to check pressure , and wwe said no due to literature we had given right in their hands explaining how with my chiari ,( which makes the cerebellum act as a cork in a bottle effect as far as sitting or dangling into the spinal canal, due to my skull being "too tight " back there), they even tried to make me vomit as well with the same literature , explaining that vomiting ( a valsalva maneuver)

as well as a lumbar puncture with my ICP (intracranial pressure)
being as high as it was since my chiari would not allow fluid to drain or move properly out of my skull, the puncture could have caused a drop in pressure or a vacuum in the lower sinal canal, sucking my cerebellum down, as well as the pressure above pushing it on through a tiny hole where it would not go, and herniate my cerebelllum, and I would of could have been dead or worse.

Had to forcefully leave after 12 hours of that, and lies that they were  talking with the NSG we had found at U of Chicago, (he's been on Discovery doing this surgery as well)
guess waht?  

he never recieved one phone call in two days from two hospitals who wanted to poke and experiemnet on me, to learn on their own instead of sending someone to a place that knows.

When I arrived in the ER the next day I had no feeling in my cuticles (pain response) about a 15-30 second short term memory, and would vomit and or stop breathing at any time.

I got emergency brain , or Chiari decompression surgery the following day, with lamenectomy and dural graft (my own tissue from under my scalp) no cow or cadaver for me thank you)

The NSG said a few more hours and I could have been retarded , dead, or a vegetable.  Was amazed at how we knew to come there and got there as fast as we did , and knew to get oxygen.

Since the pressure was also crushing or restricting my carotid arteries, hence my "vascular dementia" and no short term memory.

Our son has this malformation also, and it is poorly understood STILL, to say the least.

Wanna hear some horror stories, check into chiari.

But of course with the help of the others , we got the right help regardless of the suffering and torture here, which still goes on.

Waiting on a shunt to be revised for a very long time, counting years now, due to a CSF pressure test done with 1000 mgs of diamox a day, and doc won't accept any recolection nor, re do testing says old MRIs were fine , my blod and fluid that pours from my ear and eye on occasion due to pressure is psychological.

This gowes on very much around here and many, many other plaves with chiari , and pseudo tumor cerebri, as the fluid dynamics of the brain are just not studied enough, let alone some "reare disorder " with little or no funding like chiari.

You may be surprise to hear how many have it.

I will not quote an NSGs speculation on the percentage of population that has it but has not yet been made symptomatic yet from whiplash or , giving birth, whatever.


Good luck, and God bless.

Andie

[Gabriel90]

I forgot to say , our son also has chiari , and that he has been MRIed twice here and they say he does not have it. We copuld even see it in the MRIs ourselves, and we are by no way medically educated other trhan what the last 8 years have taught us.

Sent MRIs to my original NSG at U of Chicago and he verified it indeed was chiari, and we need to take normal chiari precaustions, all listed on most chiari sites , too.

Now can not even get him an MRI in our area since he is ralated to me. Big story on that in ASAP's last news letter about getting a DR. into trouble can really come back to haunt you.

He drops to his kness with pain at times and the school recognizes the Drs.' notes for his gym class and decides scorekeeper and reffing are all he needs to do(all illegal according to IDEA and other laws, for disabled children, doesn't matter if the child has a broken arm! they must adjust phys ed for them)

Well our problem is they recognize physical but deny he has any LDs at all, or needs any special help, or time or anything.

Even absolutely refused neuropsychological testing at ours, and his psychologists's requests!!! Said they had a meeting and decided he did not need it. later counsler actuallly came to our home and laughed in our face at our questioning "what about the law that says school must repay for neuro psych testing?",
saying they just aren't going to pay for that laughing the whole time like we are asking for a million dollors!!

Well, things are gonna turn, more and more.
We have recordings , documents you name it, and in our state, you can legally record someone on the phone without permission, only very few people know it or even will belive it and think is inadmissable in courts.
Even police , and certain Drs.!!!!

Surprises for so many.


Ouch my head!!!!!  Time to lie down.
i hope this helps someone becuse it hurt alot to get it out.
I saw this forum, and was in shock at the lack of any posts regarding chiari, PTC, or symptoms, and the words I heard for yeras , even with fluid pouring from my ears!!!!

Migraines, rebound headaches, etc, tension headaches, stresss, and psychological.

Most of us with chiari have heard all of that.

I have been in an ER paralyzed and blind, and refused even a sinmple urinalysis or blood work. Took health dept. to come in my home and wtness me having grand mal seizures, and ordered ambulance to take me straight to U of C. Guess what?

Urinary tract infection , affecting LP shunt.

Antibiotics and home next day better in three days, back to swimming , playing B. ball with my son.

(until my PSTC got worse and I outgrew the valve in my shunt a year later or so).

Anyway things are always hard when someone has to learn something.

Blessings,

Andie

[kids4me]

Thank You for your input I will check that out also!

[Gabriel90]

Thought  I should add, this , it's short.

I just went back last night and located my long lost chiari group since have been dealing with Drs. hospitals etc. forever it seems, and the old WACMA group has refused to even allow me to join as a new member , only thing they know of me is my address and name.

I can only guess that a moderator who in the past has judged my husband's assistance in a visit to a NSG where they actually tried to put me away for 30 days in their psyc ward after I lost my memory , because the NSG did not know what to do at the time, and we walked out(Thank God!)

Well that info reached the group, and the moderator through the grapevine via some emplee or patient of hat clinic, and viola , my husband got a public reaming for "not lettting the Drs. there do their job without knowing the true story.

he nade a very feeble apoligy later but, it still seems odd that I am not allowed to join my old group with nearly 2000 plus fellow members that helped save my life, and over some gossip?

  Any way the good news is that Yahgoo has 30 chiari groups you can check out. I myself just found a couple that are expressing "free speach as was not allowed at WACMA" so things must have gotten even worse since I was there last.


Hope this helps.

My headache is noit going away today , and I am really dreading another ER visit and more damned IVs, for a headache.

Blessings,

Andie