To Those With Chiari And Pots

[dizzygirl]

hi ya folks...

im wondering what those of you who have chiari.. what do you do to relieve the pain and pressure in your head.. Ive had a bad run of it this past wknd...and my pcp will not give me the stronger pain medication b/c i have had some problems ijn the past with allergic reactions and stuff like that.. and what im not allergic too.. really gives me a rough time pots wise..

he told me if it gets unbearable to go to the ER.. BUT you know ER"S it you go to often for pain relief they start to think you an addict or something like that...

for a wk straight i had some bad pain and pressure.. and on friday it really reached its peak .. and i was a mess.. saturday just as bad.. and today not as bad...ive had some nasty swelling in the back of my head..neck.. and down my spine.. along with my collar bone and various other spots ..YOU should see my FOOT!

just looking for relief suggestions until i can get to the dr in october.. i really feel that i have reached my threshold of tolerance for dealing with this day in and day out.. and all i want to do is cry.. b/c im not really getting a break from the pain.. its thru my whole body as well.. not just my head...

Wondering if you've found a pain med that help with pain... but doesnt moneky with your pots real bad??

thanks a bunch

[MightyMouse]

I don't have chiari, but have several friends who do-- one of them gets some relief from a medication called Diamox; it lowers the cerebral spinal fluid pressure. The other thing that has helped them has been spinal taps to drain off excess fluid--also at the time of the tap, the neurosurgeon was able to get a measure of the pressure to know how much fluid to take in order to improve things.

Pain meds alone are usually insufficient if the headache is actually chiari related.

Nina

[Rachel]

Oh dear, Linda. I'm sorry to hear that the pain keeps coming without a hint of relief. I don't have any advice to offer, but I did want to say hello and let you know I'm thinking of you. I wish there was more I could do for you.

Rachel

[Maxine]

I thought you said you tried Diamox, so I won't suggest that. I have actally found ice helps. I do have partially blocked CSF flow, and I know that pressure pain is awful. I have heard that if you have some CSF removed it can actually cause further herniation of the lower brain.

I'm being given a tens pain unit from the orthopedic surgeon to help with the pain throughout my spine. See if your PCP would write a prescription for this.

Also, after talking with you dear-----check out this link:

http://www.endocrine.niddk.nih.gov/pubs/cu...gs/cushings.htm

I remember you saying you have problems with pituitary and pineal glands--------small tumor/cysts.

I hope you feel better soon dear. I really feel for you dear.

Maxine :0)

[dizzygirl]

yea i was on diamox for a very very short time and was quickly taken off of it.. it was given to me to relieve pressure from swelling on my brain....

maxine i had a tenz unit back in 2001?? i think it was and that actually brought me some relief.. along with the pain meds ans pt i was recieving at the same...

Im calling the dr s office im going to in october to see if i can get in sooner....im praying that i can..b/c i would boogie off there tomorrow if i could!

Cushings.. you know ive had the blood test for that several time done both in cleveland and pittsburgh and it comes back normal.. but i believe that there is another test that can be done besides the blood one.. i havent had that one done ... But i wonder if it might be worht the whirl to have it done b/c i on physical appearance look like text book case of cushings... and apparently a bunch of other drs have thought so too.....UH...shoot i forgot what i was going to say............

next thought.. i was diagnosed with pcos as the reason for my stopped periods and other endocrin things going on.. but i have been on treatment for pcos for some time now... and im still not getting a period.. and more symptoms seem to be appearing.. that are realated i believe to the endocrin department... I do wonder if the critters on my pituitary and pineal gland have something more to do with whats going on but again it takes finding the right endo.. who wants to tackle MY ISSUES.. its like finding a flea in a hay stack...

Do any of you find that if your base of the skull is rubbed ( I have HUGE Knots there or something) that you black out or come very close to blacking out.. or get alot of freaky floaty things??

I did alot of sleeping this wknd.. Im finding it hard to stay upright for long not so much with pots but b/c of pain.. and it tires me out tremendously.. and i have to go lay down and sleep 8-9 hours or longer for sitting up ...kind of amazes at where my quality of life has gone to...the pits..

I really hope that i can get some help with my upcoming appointment... and maybe pointed to addition help if posible....

thanks for the support and suggestions it very much appreciated.. and thanks for reading my ramblings~!

[MightyMouse]

Dizz, if you are suspected to have Chiari, you probably shouldn't have anyone manipulating/rubbing the base of your skull right now--it's possible that when someone is rubbing, they may actually be pressing on that portion of brain that is herniated outside of the skull. If you have I saw that you wrote you have a neck collar. Is it a hard collar or a soft one? If you've not tried a hard collar for some relief, you might want to consider it, and it would protect your neck and skull a bit.

Also, you may want to look over the world arnold chiari website and consider joining their discussion list (an email group rather than a forum).

Did you not tolerate the Diamox well or did they just want you on it for a short time?

[kjdube]

Dizzygirl,

Sorry to hear of your head pain and other symptoms. Here's a group that has helped me, and mightymouse mentioned, you may want to subscribe to it :

http://health.groups.yahoo.com/group/chiari/

Have you had your ICP pressure checked ?

This can be dangerous if its elevated, especially in chiari patients.

I hope you see the dr very soon !!

Keli

[thejohnsongang]

Sorry to hear that your having such a bad time with the pain. My daughter has POTS, EDS, migraines and Von Willebrand. I scheduled her an appointment with the pain management clinic to see what we can do for her pain. It was suggested by one of her doctors. ER's can be a joke if your in pain. They look to see if anything is broke or bruised and they give you Tylenol 3 and send you home. It just doesn't work for everyone, then when you end up back there the next day or 2-3 days later they think we are just a bunch of pill popping junkies looking for a fix. My mother went through a pain management clinic before her knee surgery and they helped her a lot. They made sure the pain was under control with out all the second guessing of her injury as she had medical documentation for it.

Just a thought. Call your insurance carrier and see if they have a pain management clinic in network and if so, get a referral from your PCP. It can't hurt and it just might help. The local clinic here is great, but my daughter will be seeing hers at John Hopkins where all her doctors are.

Good luck and let us know how things work out for you.

[stellakitty]

Hey Dizzygirl

I have chiari, and CCI (w/ dysaut.)... I use an "Aspen Collar" EVERYTIME I am upright (I am SUPPOSED to use 24/7 but it's to pokey when I'm laying down...). I'm seeing Dr. Arnold Menezes at U of Iowa and waiting for the fusion for the instability.... Right now I do cervical traction everyday... It's heaven while I'm in it! Pain goes from an 8-10/10 to a 2-4/10.... But I have to go back to laying down immediately after unhooking myself... I typically can't sit up for more than 10 mins w/o fainting but in traction I've sat there for more than an hour and have yet to pass out in traction...

I also use a liqiud form of morphine, and ultram... Depending on how severe the pain is. Zofran is a godsend because vomitting raises your ICP, making the pain worse...

Also... I believe you're seeing Heffez... He did my decompression in June 2006.... For my consult he got me in within a week! I'm sure he can get you in sooner than Oct... He is so kind! Just call!

Alexa

PS... STAY AWAY from anytype of cervical manipulation! It is BAD for chiari!!! Check out WACMA (just google it... can't think of the domain... it's the first on the list) for tips. And I second signing up for the email list... It's helpful... Without I would feel pretty alone right now!

[MightyMouse]

Alexa said very clearly what I was trying to say--you should not be getting any type of physical contact, including massage, to the base of your head/neck unless a neurosurgeon tells you it's safe to do so. I also second the suggestion that you call Dr. H's office and see if you can be seen sooner b/c your health is becoming more unstable. You might be able to pick up someone else's canceled appointment or be given an emergency appointment.

Hang in there.

[dizzygirl]

hi..

Uhm lets see.. no i dont have a cervical collar.. i used to have one like 6 yrs back.. but dont any more.. i do have a cervical neck support pillow thingy.. its a U shape memory foam thingy whic i use in car rides and long trips... to support my neck b/c it begins to feel not nice about 15 minutes into things...

about diamox.. i was on it for 3 days.. and then wnet off of it b/c i developed some horrible muscle body fatigue... i was unable to stand due to the muscle feeling .. and i felt like my lungs where wet.. and had trouble breathing on the medication.. there where afew other things but i cant recall them right now.. but i was taken off the med...

as for pain manangement... i have a pain management dr..(a neuro) but she treats my headaches.. as migraines.. but the "migraine" medication does not touch what im feeling...ive tried emergency migraine meds both orla and IV.. and prevantive... few wks aog in the er they gave me a nice combo of stuff.. and that brought me temporary relief...

alexa...yes im seeing heffez.. and im just waiting a day or 2 for my check for traveling to clear in the bank before i call heffez's office...But im going to be calling them with in a few days to get in sooner b/c i cant atke it any more! so im hoping to be leaving for milwaukee very soon...and im ging to check out chiari yahoo group....

i thank you all so much for your susggestions means alot

[MightyMouse]

Dizz, I going to bet my savings (well, not that much, really) that Heffez will have you in a hard collar, Aspen or otherwise ASAP. I saved mine even thought I HATE them... hated wearing it 24/7 for an entire year, but I know that I needed it. And, when I'm having really bad upper back, neck and head pain, it's the ONE thing that helps most of the time. I have probably 4 Aspens and one Miami J (which doesn't fit me right, I need a smaller front piece). They are expensive so unless it's completely ruined, I've kept mine.

Alexa, I used to line the inside of the collar with an old t-shirt or sweat shirt (cut up) to help it not poke me when I was trying to sleep. It really bothered my collarbones the most when I was lying down.

nina

[dizzygirl]

may i ask what an ASPEN collar is>? and a miami J ?? do these help relieve pain.. I mean .. well i know what i mean ...LOL.. in my head but its not coming out right..hahhahah

what im trying to ask i assuming it ofers some support... does it help relieve pressure too? and do insurance companies typically cover these?

[stellakitty]

may i ask what an ASPEN collar is>? and a miami J ?? do these help relieve pain.. I mean .. well i know what i mean ...LOL.. in my head but its not coming out right..hahhahah

what im trying to ask i assuming it ofers some support... does it help relieve pressure too? and do insurance companies typically cover these?

They're hard collars... Insurance covered my Aspen collar... otherwise it would've been about $240. I also had a "Philadelhpia" Collar (another hard collar)... Less stable than the Aspen... The Miami J is even stiffer than the Aspen Collar. The Philly was $40 and I had a script for that but I don't think we didn't submit it cause it was cheap.

My soft collars were only $10 if you want to try that... I got mine at PT...

They can help with pain... Mine helped originallly but then I think everything just progessed too far and now the only thing that helps is traction (although if I'm not wearing the collar I become very hypoxic like I did before decompression).

Also... I didn't see if you have EDS or something similair but that can affect your decomp as it did in my case... I had three REALLY good months post op and now I'm worse than I ever was... one foot doesn''t even work cause my head has sunk and junk. So connective tissue stuff is something you want to keep an eye out for...

I'm sure you can get into Dr. Heffez sooner... He's really compassionate... When I had meningetitis and needed another op 2 wks after the decomp w/ a picc he called my mom EVERYDAY, personally... Iowa is just closer to us, and Dr. M deals alot with EDS and chiari junk. But if you have any questions about Heffez or surgery you can PM me...

Alexa

[dizzygirl]

thank you alexa... i have never been checked or eval'd for EDS... But i plan on asking it about it.. for it to be ruled out anyways...before i even consider anything surgical if things come to that anyways.....

I looked up those collars on line.. wow they are attractive little fashion statements..***giggling****....but if they work god love them...

Im sorry that you've had suchs a rough time post op.. that sounds scary and well painfull.. hope that you improve with time and treatment....