stellakitty

That's a symptom of chiari... I get a severe headache from anytype of exertion (sneezing, coughing, laughing, bending over). When I cough it's so bad that I end up passed out. I believe that the idea is that with chiari your CFS flow is already diminished and when you do the above mentioned things the flow is further restricted. Of course I think that it can happen with ANS dysnfunction but just wanted to let you know dizzygirl that chiari can cause that...

I win for the youngest gallbladder removal... I had mine out when I was 12 (not a typo).

My gallbladder completely ceased to function (much like everything else in my body)... By the time it was removed I could eat only soup (no fat) and I was 5'5" and weighed 80 lbs. The surgeon told my parents that it was 3x the size it should've been, filled with sludge (old bile), and layered with fat (my body had been trying to hide it).... It obviously hadn't worked in YEARS (but I had had symptoms for 2 months when I had my appendix out). I have severe EDS and according to my doctors that's why I don't have a gallbladder.

Hi Morgan,

"Angie, are you sure it wasn't klonipin your son was given? I was given that many years ago for a reaction to a drug that made me have seizures. I couldn't even function. I know a lot of people use very tiny amounts w/o any problems, but it isn't too great for others. A lot of people confuse these two drugs, because the names are so similar."

I am not confused about the two drugs, I am know this was without a doubt Clonidine, because Lex also had a Clonidine suppression test later to be sure about the catacholomine levels. Klonipin, she has been on a very slight dose of this for sleep, then we found something bettter.

The point here, every reacts differently to meds, someone stated they could not tolerate Toprol, Lex does great on Toprol. I did speak with Lex's pcp during and after the clonidine incident, she tells me it can be difficult for some patients. The poster asked for my opinion and I gave it with the proper disclosers.

Angie

Hi,

Wondering??? Who prescribed this for you and why? In my opinion, (disclaimer, I'm just a mom); this is an outdated drug with nasty side effects. Clonidine is used to control blood pressure, but is it also used in mental health facitilies, I'm sure you've seen One FLew Over the Cuckoo's Nest's? That's my kid on clonidine, a listless, breathing matter on my sofa, no lie. My daughter got prescribed clonidine just about a year ago, she was having some horrific bp spikes and she had some abnormal bloodwork indicating a "pheo-tumor". The doc's had her taper off of her usual bp meds, go on clonidine because it is one of the few bp drug that does not interfer with bloodwork and scans for a "pheo". She was on clonidine for about 3 weeks, I am just thankful no one is in jail on some sort of murder charge...If the kid wasn't passed out from an overdose of the stuff, (it's hard to get the dosage right), she was having mood swings, mostly in the wrong direction. The day my daughter had her last scan, she was DONE with clonidine!!! On the upside...I think a paid like one dollar for the whole supply.

Yuck...Just say no to this. (IMO, OC)

Angie

Hi...

I too have Dysaut., Chiari, EDS, and instability issues. I'm waiting for a CCF... What do you think of TCI? My mom is going to take me up there as I was just dumped by another nsg due to being over his head (he said TCI the 1st I was up there...). But it will take alot of work to get them "in network".

Also with the tethered cord, what kind of sx do you experience? It hasn't been brought up with me, but I wonder if I have it. I'm doing cervical traction daily and when I do the traction I get a feeling from my waist down that everything is "asleep" and being pulled. I also have an ASO brace for severe drop foot (presumably due to the CCI) and I can't bear to wear it due to the spine pain it causes. When I sit I get a sharp pain in my tail bone. And I NEVER pee even though I drink copious amounts of water. I did the TCI questionnare and answered yes to almost everything but IDK. Did you get any relief from the your chiari sx from the TCS surgery?

Have you done Invasive Cervical Traction yet? Or are you waiting until the CCF?

Also if you didn't know WACMA and Chiari Connection International both have Yahoo email lists... You can get daily digests to see what's up with other chiarians. But I think I've seen you on there...

Alexa

I too have VERY low vit. D.... I've read that it's common with EDS (which I have... BIG TIME). My mom also read online that it is thought to be an epidemic? Don't qoute me on that one though.

Yes... It is tested by blood... My levels were basically none exsistant... And my pain was even worse than it usuallly is (which is downright miserable). Even my hair hurt.

I take 2000 IUD of vit D (just v D)... Mary.... I don't know if you're taking enough... Talk to your doctor. My pcp, looked it up first and then started me on 1000 IU... Then I went up to 2000 IUDs.

Once I woke up on the kitchen floor with a paring knife in my gut and had to have emergency surgery to remove it.... I have no idea how it got there as I don't remember the entire day or how I ended up in the kitchen. I just know I don't recommend it as you WILL end up labeled as suicidal and in 72 hour lockdown (c'mon... I would've used the BIG knife! I'm not stupid!). Then I got to leave the mental health facility with a diagnosis of being "too happy" for someone in a w/c on O2 24/7... She told me I had DID (disassociative identity disorder).

The first time I passed out that wasn't in a controlled setting was on my bike (haven't been on one since) on July 4, 2003. I ended up with gravel embedded in my knee and a broken wrist... But it took the doctors TEN DAYS to diagnosis the wrist (which is worse the time I walked around the broken wrist for 10 days or the time I had appendcitis for five days before the docs figured it out, after 3 ER visits).

There is also a dent in the foyer wall where it made contact with my head (concussion). I was taking my guitar lesson and stood up, and went back down... I fell so hard I knock his music stand that was nailed into the wall out (concussion again). I was taking a shower (in my room... I can't sit in there cause I'm too tall) and I fainted out of the shower... Down comes Alexa, curtain and all (concussion, dislocated ribs). And I've taken more tumbles down the stairs than I care to admit to... I now sleep on the floor in the living room (partly cause it feels good on my instable neck until it gets fixed, partly cuz it hurts to slam into the slate at the base of the stairs).

My head and knees seem to take the brunt of the damage... My knees are ALWAYS swollen and bruised. My physical therapist when I get in the pool is always counting up my bruises in her head.

And this wasn't from fainting but when I first got my wheelchair I tried to take it down the stairs like in the movie "The Changling" (with George C. Scott... OLD horror movie)... Anyways... It doesn't work like it did in the movie... I ended up face planting and breaking the arm off the rental chair. That was chair #1. Now I have my own "electric purple" chair to fit my 5'10" body (my thighs are 23" long)... anyone here ever do something stupid like that?

As far as ADD drugs go I have been on Ritalin and Concerta. The Ritalin gave me about 2 hours where I was literally dancing around a flippin' flag pole at school and laughing hysterically (worse than the time I ate the WHOLE bottle of glucose tablets).... Then I "crashed". After the initial brust I would fall asleep and not wake up until the next morning. I gave that one like 3 days (can't get any schoolwork done when you're that hyper). Then I tried Concerta... I didn't like that one either... Quite honestly it didn't give me *enough* of a boost to get anything done. This was all before we knew that my problems were literally in my head....

I did try Provigil... That one I did like. I don't take that anymore because it's so expensive and it doesn't matter if I'm awake or foggy and whatnot. I can't go to school and I'm basically housebound, so I make my own schedule. The provigil helped me to think and kept me awake... But it didn't help the fainting (part of the reason I don't take it anymore... If it kept me off the ground I would...).

I used to do florinef as well (before my bp started to swing soooo high, as high as 250/140ish... I think that's the record). Then some idiot at an un named hospital decided that I was just trying to get attention and I fainted on my bike for "fun" (I love to spend the 4th of July in the ER) so he took me off of it... Then we tried it again it stopped working. I tried to take it again a couple of years ago before going to see a neurosurgeon and it gave me an awful pressure headache.

There are sooooo many reasons that a person can have POTS symptoms... I have never had my blood volume tested (never seen a reason for it) aside from tons of CBCs. Personnally I have autonomic dysfuntion due to Chiari (decompressed 6/6/06) and cranio-cervical instability that has caused pressure on my brainstem and cervical spine. I also have a major case of EDS (I can lick my elbow)... I saw a geneticist at University of Iowa in July and she feels that there may be a genetic link between EDS and vasomotor instability as she sees so many POTSys coming into her clinic.

Some other causes I can think of off the top of my head (just cause I've been tested for them multiple times), are "pheochormocytoma" (tumor on the adrenel gland... I was thought to have it due to my urine and serum cathecholemes being >3xs too high... Alas my MIBG, Octreotide, and CT scans all came back negative). And the other one that I can think of off the top of my head is "Acute Intermittent Poryhpia" (King George III had it.... it's autosomal recessive. If you leave your pee out in the sun during an "attack" it will turn purple)

I tend to lurk on this board but I had to post to this topic...

Mary.... According to my mom I do the same thing as you upon take off and landing when I MUST fly. My mom says that my eyes roll in the back of my head and my body convulses, then I pass out. She usually lays me on her lap so that it looks like I am sleeping. I also get a SEVERE pressure headache and my ears refuse to pop (and we live at 8000 ft, 40 mins from Denver). Once I passed out on my way to the potty and was unresponsive and they nearly deverted the plane to send me to the hospital because the flight crew was so spooked. Luckily my mom explained everything to the ground crew.

In addition to dysautonmia I also have chiari malformation (decompressed), and cranial cervical instability so we've always wondered if those were causing the severe plane issues to some extent.

Unfortunately since we don't have any competent neurosurgeons in our area to deal with my head/neck (I'm only 18... not letting just ANYONE fuse me together seeing as I have to live with this for a while) we have to travel out of state.... And I don't really do much better in the car. I perfer to get it over with on the icky plane ride then suffer through a road trip...

Alexa

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

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!

Have you tried Procrit shots? My daughter did well on these until her red count got too high, then the risk for blood clots increases. Dr. Grubb also suggested Sandostatin shot for her, but we didn't get around to trying those.

Angie

Thanks,

Interesting thread...My daughter has been dx'ed with EDS/JHS, she is extremely tall, 5'10", (looks like Marfans), my husband and I are shorter, I'm 5'5", he's 5'8". We, (my daughter & I) saw genetics a couple of weeks ago, the term, hypochondroplasia, did come up. My uncle belongs to the "Little People" society as he is under 4'5", he is this type of "little", regular torso, with short limbs; plus my sister is extremely small, about 4'9", she is appropriate in in limb size. I'm gonna have to research this tomorrow, but is this the same type of gene mutation?

Realizing everyone's body reacts differently to medication, my daughter absolutely cannot tolerate the fentanyl patch or the dissovle tablets, they make her into a "crazy person" literally. She does way better on Ultram and Morphine, .002.

Angie

I'm a circus act but becuase I bring it on myself when I mention that I'm an elbow licker. Once I was being prepped for a scope and the sleep doc heard that I had EDS and wanted to know what I could do... he had me lick my elbow for him while they were trying to get in an iv.

think of the positive... you're helping to get the word out! and that takes chutzpa.

Hi,

I read about Angel Flights, I was looking to get my daughter a flight. These people are volunteers flying these little "flyswatter" planes, they are not equipped to handle any type of medical emergency, (not that passing out for you would be be); but they are designed more for "chemo-type" patients who can actually sit/stand.

As a member of the "been there" club, I think it would be extremely unwise for you to try to travel alone. I took my daughter to Toledo from Denver to see Dr. Grubb, she siezed on take-ff and landing, passed out on my lap for the duration of the flight. The attendant could see she was having issues, gave us O2, was very cool about the ordeal, that was going to. On the flight back, she "siezed" during take-off, then passed out on my lap. She had to go to the restroom, passed out, almost hit her head on one of those metal serving carts, fainting is an everyday (was) ocurrance at the time. Let me tell you these people totally freaked out and wanted to divert the plane to Chicago and boot us off as a "medical emergency". I had to speak with the "ground medics" and do some fast talking to keep the bus in the the air. You do not want a plane full of people mad at you because they have been diverted! If you are alone, passed-out and unresponsive, they will land the plane.

Am-Trak is a better idea, you need to call in advance to ensure you get the "handicapp" sleeping car, we've done that too. Eighteen hours seems like forever, but when you are sleeping, the train is still moving. The Amtrak people will help you with your bags and whatnot, they will "golf-cart" right up to your car. Once again, I don't recommend you do this alone. If you pass-out, no one will find you until it mealtime.

Sorry to be such a "downer".

Angie

Annie,

My daughter takes this, she was prescribed by a GI dr. with alot of experience with Dysautonomia...She was on Reglan, he did not want her to take Reglan b/c it can cause "movement disorders", (I don't remember what specifically), anywho, she says it is a huge improvement over the Reglan. She is "going" more fequently and does not "taste" the previous night dinner...The DOWNSIDE; this drug is not "approved" for use in the US, (we are the only country?), I have to have it "compounded" at a local phar., it is not covered by our insurance plan, this is another 60 bucks a month for me to squeeze out of this squashed turnip.

A

Yeah Maxine...Get a new PCP ASAP!!!

Angie

Hey Jacquie,

Just wondering if you have any more info about your "suspect" pheo? I'm following your topic, my daughter is going through the same, her blood pressure is through the roof, 227/147, and that's on 3 different bp meds. Her urines and blood work have all come back with high catacolemine (sp) levels, with a negative on the adrenal scan (CAT). I have to schedule her for a full body scan with nuclear meds next week to see if source of her hypertension can be found. If it's not one thing, it's another....

Later

Angie

I'm sure I must look like I'm wearing a kevlar vest like an undercover officer or something-- you and me would make a funny pair-- Vader and the Police

Well I haven't needed the vadar tank since going to Milwaukee... We think the hypoxia (dropped to low 60s ON O2) was due to a squished brainstem.

MM-

Thanks for that adorable story! Did you ever notice that it's always little kids or old people that ask you what's wrong? That's whom always asked me when I was in the w/c with the "vadar" tank... I personally would rather that people just come out and ask you what's wrong with you than having them just sit there and stare looking stupid!

Alexa

Hey!

With me the MRI wasn't definate... Both the neck issues (disk degeneration, no fluid between spinal cord and vertebrae) and the chiari appeared to be fairly mild. From looking at my MRI he couldn't definately say whether either issue was enough to cause me to be so disabled so he ordered a SSEP and BAERs study. When the SSEP came back abnormal (significant delays from my legs to my brain indicating that something was blocking the nerve's pathway... I didn't really feel the shocks in my leg much) he decided that doing the chiari surgery was worth the risk... He had told my mom several times that he couldn't just leave me like that, and during the consult he said that he'd do what he could to help me.

Emily- Maybe some more testing would be apropiate? On the MRI we sent up to Dr. H he felt that there could be something but it was hard to tell due to interferance (I had braces). He told my mom to take my braces off and bring me up there. Sometimes on MRIs it is hard to tell just how bad the problem is. I get neck and arm pain and Dr. Heffez had my pcp get me a soft cervical collar... It does help with the pain and I feel supported but then I end up looking like a car accident victim. On your MRI did you get contrast? Did they just do your c spine or did they also scan your head? Maybe you could try a collar and see if it helps any?

Keep looking until you find answers and don't give up! My mom and I had to listen to people tell us that I just had typical POTS and was just in a slump (yeah a slump that lasted years!). I know that it is hard for anyone to be stuck on a couch for two years, but it was really hard for me because I had to miss out on doing stupid teenager stuff. I know that we need to see how I hold up over the next couple of months, but for now I can't deny what this has given back to me... I'm now looking forward to being a senior in highschool and going off to college so I can obtain the necessary degrees to become a pyschologist.

Alexa

I was going to do Dr. S' study but I had to be off all of my meds for two weeks... This was when I started to get really bad health wise and we knew that I just couldn't discontinue my meds for that long so we cancelled.

Hey Dano~

I'd say go with your gut! You know what is going on in your body better than anyone else... If you feel that you have stenosis ask your doctor for an MRI. I actually diagnosised myself... I saw a tv show on the Discovery Health Channel ("Mystery Diagnosis") and my family and I just couldn't ignore the similarities. The girl featured on the tv show had the exact same symptom progression as me until she got so bad that she was in a wheelchair... Unfortunately she wasn't on O2 but I knew that was something that was controlled by the brainstem, with the compression gone so is the O2!

Symptom progression... abdominal pain & nausea/vomitting--->headaches--->dizziness--->fainting--->wheelchair--->oxygen level dips at night leading to O2 with sleep--->O2 24/7--->SEVERE orthostatic intolerence (couldn't even sit up or recline)

If you do have stenosis look for an experienced surgeon... Originally we were going to go to TCI but we found more patients whom perfered Dr. Heffez. Dr. H is great! When I became really sick after surgery and ended up in patient we called my mom personally almost everyday as soon as he found out. If you leave a message he usually calls back within an hour (unless he's in surgery). No one knows your body better than you... If your doctor refuses to listen to what you are saying then you need to find someone else! Good Luck!

Alexa

ps... Michelle, Mighty Mouse, Sunfish... I really appreciate the fact that we are allowed to talk about all of this! Thank you for making this such an open, welcoming board! I really appreciate all of the hard work that you guys put into this board even though you are all dealing with your own health issues!

Emily~

I cannot believe that someone would bad mouth Dr. Heffez like that!! For me Dr. Heffez didn't just decide on surgery from the MRI (I didn't have the standard 5 mm herniation) plus he absolutely refuses to fuse my neck at this point (but after last month or rather these last 5 yrs I'm all surgeried out)... He waited until we did the SSEP/BAERs study to make any decisions. Now we're glad that he did the surgery as when he went in things were worse than they looked on the films... I had a major artery/vessel (mom can't remember what he told her) being choked off by C-1, so my blood pressure was dropping to unreadable levels when my brain was already deprived! No wonder I was fainting all the time!!!

I refer to the local neurosurgeon as "God" because he is soo arrogant! When we saw him for the first time while I was in the hospital the first thing out of his mouth was "Well why's you go all the way to Milwaukee for the decompression... You know that we do those here all the time!" I'm just sitting there thinking, "oh really, then how come you're not listed on the WACMA site?"