MightyMouse

I've never had a problem with local anesthetics--and I've had plenty over the years. I've had periodontal work with stitches, tons of stitches from when I was a crazy little kid...hmmm...stitches in my lip, eye brow, forehead, knee...not to mention all the stitches I've had over the years from surgeries--neck, sinuses, shoulder blade, hip, and 7 different laporascopic sites on my abdomen. You should know that local anesthetics are used for MORE than just pain relief. They can help to control bleeding in the area of the wound. Some folks are super sensitive to local anesthetics--I'm not one of them, despite being very sensitive to epinephrine delivered in larger doses--which I've had to take for anaphalaxis on 3 occasions. Those shots clobber me for days and days. Once the stuff wears off and I'm done shaking and being hyper-alert, I feel like I just completely am empty of energy and can barely walk, stand, etc., even just to use the bathroom. But, better than the other option... to no longer be here! If you have someone with you when you're at the doctor, and you haven't had a problem with locals before, you may just want to give it a shot (hmmm...no pun intended...) to see if it helps or not. Some folks with ANS problems actually report that local anesthetics do not work for them at all. Nina:)

I remember one of the same company's collectors telling me that they couldn't do anything to me if I just kept paying something every month. Didn't stop them from playing hardball with me the other day, but I think I'm just going to keep doing what I have been doing: divide up what's left at the end of the month and give each provider their portion. best I can do! Thanks again for all the kind words here--it perked me up lots. Michelle, if you're reading this, I was kind of cracking myself up because I'm the DINET Support Leader. oy! Okay, even a "Susie Sunshine" like me has a bad day once in a while. Nina

Pins/needles/numbness or electric-like sensations/shooting pain, might be caused by spinal nerve problems. You may want to get your neck checked out for nerve compression--either from disc problems, or from arthritic changes, or even just from a congenitally narrow opening for the nerve or for the spinal cord itself. A good neurologist or neurosurgeon should be able to evaluate you. Nina

You are not a hypochondriac! Lots of the symptoms overlap with other disorders in the same group. I used to constantly worry about my elevated ANA and all the really really horrible disorders associated with the type of ANA issue I have (Michelle has it too...it's high ANA, speckled pattern, stains pink). Now I just am happy that, so far, I've not had most of the symptoms associated with the worst of the disorders. Nina

You guys are great---thanks! I'm still feeling sickly with some yucky stomach bug, but I'm trying hard not to worry about the money. Nina

congrats Jess! That's great news... and I hope that you end up loving the job and are able to keep up with the pace... When I returned to work after being out for a year, the first few months were very difficult. I was exhausted every day. However, each month it got a bit better. Working still leaves me pretty wiped out every day, but I'm able to plug along; I suppose that being unable to work gave me a new level of motivation to push through the exhaustion and keep it up. Hope you can do the same! Nina

Thanks guys. I did fill out paperwork to see if I could get assistance or some forgiveness. I was offered a 20% discount on the bill, but that still left more than 8000$ outstanding. I never did get a response from my paperwork that I submitted. My tax paperwork showed that I only had disability income for most of the year...and I earned a little bit when I worked for a few weeks before the bone graft collapsed. The paperwork and a letter from my employer clearly showed that my income was way less than the total amount of the bill. I'm sure they've done a credit check already--and I have GREAT credit because I always pay ontime...even if I can't pay off the balances. I am, however, at the top of my credit limit and made it clear to the agent that I couldn't pay with the cards because I didn't have that much available $$ available from any of my cards...and besides, it would be robbing Peter to pay Paul...back in the same boat but witha different captain...you get the picture. I HAD been making good faith payments every single time a bill came in...but they told me it wasn't enough. Basically, I pay off my regular monthy expenses (food, health insurance, car payment so I can continue to work, mortgage), and then I divide up the rest between the medical folks I owe $$ to--all are a result of the surgery--this includes radiology, anesthesia, the hospital itself, etc. The only one who dropped all my outstanding charges was the surgeon (bless his soul!). I'm calmer now. Just bummed...and still peeved with my former health insurer who failed to cover most of the surgical costs. Also, it wasn't like I could go to an in-network provider to fix everything--no other doc would touch me because they said my failed graft was "another doctor's liability." So, I went back to the original surgeon because all his peers were too afraid of being sued by me if things went badly.

Okay, I just need to vent for a minute. The hospital that took care of me for my 2nd spinal surgery (emergency b/c my bone graft broke into little bits) is hounding me for money, despite the fact that I send $$ every month in whatever amount I can afford. What an upsetting call...they've set my file to their attorney for a decision regarding taking me to court for the $$. They even asked me if I had any family who'd be willing to pay the thousands of dollars I still owe. Giant sigh. I hate crying on strangers but this woman got me so upset I was barely able to speak on the phone at all. Finally, they set me up on a payment plan that's more affordable (not exactly affordable, but not 1000$ a month either... ) I keep trying to remind myself of my own words last year: my health and ability to stay mobile (or in the case of my broken neck, alive! ) is priceless. Lather. Rinse. Repeat... Okay. Rant off. All that crying has made me completely exhausted. So much for getting rest while home sick from work today. Nina (regaining my composure...)

Hmmm. Heather, an x-ray isn't very diagnostic of things like sinus infections or other more subtle things than a break/fracture. If you haven't seen an ear/nose/throat doc, that might be a place to start (otolaryngologist) (I think I spelled that right ) I had pain in the sides of my neck and ear pain for years--it was sinus related but went undiagnosed for a very long time. I had sinus surgery this past March and my ears have been GREAT. Also, the pain on the sides of my neck is gone most days. I only have occasionaly problems when my allergies are acting up and get my sinuses blocked--leaves me with pressure and ear pain, swollen glands. I also had pain at the back/base of my neck, and a feeling of fullness in the front of my throat--this was caused by a spinal abnormality which I had repaired. Hang in there. Nina

Justin, is it possible that you might be able to find a new doctor who is more knowledgeable about his area of medicine? Not sure what your situation is--I've had a few really horrible cardiologists, who I only went to for one or two visits. I now have one who's not an expert, but will call an expert in a blink if he needs to (i.e. will call Dr. Grubb, Dr. Low, Dr. Rowe, etc.). Nina

I've never had any problem with immodium. I've taken it many times. Nina

you may want to get that checked with your eye doctor, just to make sure it's nothing to worry about. I get floaters (spots of light that float in my visual field) when I have a migraine, and I also have a spot of lessened black/white intensity in the center of my vision that occured from a concussion (I passed out and hit my head)--it's call a "vitreous change." Think if it like the center of your eye looking through a bowl of jellow...if it's undisturbed, it's clear. However, I broke the jello when I hit my head, causing a section to slip. It improved over a period of years. Never would have known what it was all about if I didn't go to see my doctor. Nina

The symptoms you describe are NOT normal. You should see a doctor; and you may want to make it more likely you'll have a relatively good experience at the doctor's office by choosing from a select few doctors who understand this area of disorders. To link directly to the DINET's physician listing, use the following url: http://www.dinet.org/physicians.htm and, for the NDRF's physician listing, use the following url: http://www.ndrf.org/physicia.htm Good luck and do let us know the outcome! Nina

Of the autonomic disorders, Multi system atrophy (MSA) also known as Shy-Drager, is pretty rare. There would likely be brain abnormalities that would have shown up on CT or MRI's of the head (atrophy of a portion of the cerebellum). There would be parkinson-like symptoms, that would be progressive. There would be slurring of the speech which would likely worsen over time. Walking would be come quite difficult, if not impossible. Weight loss is from muscle wasting, which would be pretty obvious--the more muscular areas of your body would start to lose mass, like the upper legs. Respirtory problems would be apparent, including sleep apnea (where you stop breathing while alseep). Also, the outcome is grim, with life expectancy at about 7 years from onset. That being said, if you've had your symptoms more than 7 years, you probably don't have MSA. The eye issues can be caused by any number of issues, including chiari, high intracranial pressure, etc. If they persist, you should see your doctor. The bladder is controlled by the ANS, and retention is a symptom I have lived with all my life (38 years). My GI functions are also impaired. My gallbladder basically died, as it became atonic (no tone) when I was 30--just stopped working and had to come out. I have POTS and NCS/NMH. As for doctors testing for MSA--if you've gotten a POTS dx or similar dx from your doctor in under a year you're in the minority. Most docs don't know about this area of disorders, so to have the expectation that they'd even know what tests to perform is unlikely. More and more, folks ARE getting sent for a tilt test by docs who don't necessarily specialize in ANS issues, which is a huge leap within medicine. I'm not trying to excuse the failures of physicians (yeah, it still bugs me that I was 32 before I got a definitive dx despite being ill all my life...GRRRRrrRR), but you must keep the above in mind--if they don't know about your disorder in general, you can bring them some info to get them up to speed (articles, links), you can request certain tests to rule out other disorders, or you can try to find another doctor who does specialize in ANS problems (hard to find). Nina

Zicam should be in the cold rememdy section of any major pharmacy. They have them here at Target, CVS and Walgreens. When I have a cold, I take CoQ10 and extra vitamin C and E. Other than that, I try to get extra sleep and drink plenty of fluids. Lastly, I rinse my sinuses with saline--not one of those tiny spray things, but an actual RINSE system -- there are a few of them out there, currently, I'm using NeilMed's sinus rinse system, but I've also used SaltAire. Both are available at varios places online. I mix my own isotonic solution using warm water, salt and baking soda. Nina

I'm on a different SSRI, but all of them have similar start up issues... I had nausea , yawning, and aggitation for the first 2 weeks. After that, all the side effects were gone--so if you can get through that period, you should be good to go--unless, of course, you're upping the dose in stages, in which case, give a week or so per dose change Nina

I've had days, even weeks when I've been so weak that it was a struggle just to putter about the house. If it doesn't pass quickly, you should see your doctor. I once had salmonella for a period of several MONTHS because I just chalked up the exhaustion and GI distress to my malfunctioning autonomic system. I've also had mono twice--both times , the all-over weakness just didn't seem to have any changes, just exhausted and weak all the time--and in hindsight, I should have noticed sooner that there were no bad days or slightly better days, only horrible days. When that happens, it should be a signal to you to see the doctor. Like I've said before on this board, just because you have an autonomic issue doesn't mean your not susceptible to all the same illnesses at the rest of the population--it just makes it a little harder to sift through your "normal" exhaustion and weakness and something that falls outside of your everyday "normal." Nina

Justin, I know several people who have had similar experiences to you. I have witnessed several "seizure-like" episodes that happened to one of my friends at the NDRF conference. A very long seizure happened after she was startled awake by a roomate who smelled smoke and thought there was a fire. Apparently, the surge in epinephrine that happened when get she woke and thought there was a fire set off the whole thing. She needs to use a wheel chair after such events because she's so weak afterward. Not sure how helpful it is to know your not alone; doesn't make things much less scary when it's happening to you. You should definitely talk to you doctor (who ever is managing your autonomic problems) about what happened. Nina

Goosebumps (which I think you're calling the "chills") is the dominant side effect with Proamatine. I had that every day I was on it, but to a lesser extent the longer I took it. You medication list is a pretty common combination of items. Proamatine is VERY short acting--only about 4 hours in your system. It's a good supplemental medication for those who take other things, but get only partial relief (keeping in mind that some people also do well on JUST proamatine). 10mgs is a moderate dose. I've taken as much as 12.5 3x a day, and as little as 5mg 3x day. Nina

not sure if he's written about it, but I did hear him discuss it at the last NDRF conference that was held in July 2002. BTW, just because your films came back "negative" doesn't mean there isn't a problem. It all hinges on who read your films. Mine were consistently read as normal despite having a shattered disk that had fused naturally across a period of 20+ years--and then started to fill in with bone inside my spinal canal, compressing my cord significantly. Normal cord space is about 16 to 20 milimeters. Mine was down to about 7mm, hence the surgery (my neurosurgeon uses 10mm as the functional threshold). Nina

Hello Dan--I replied to your post on the other board, but will post it here too... my BP is all over the map, and it can sometimes run quite high (highest diastole was 160 ) and quite low (lowest was NO diastole and a systolic of 30 ) Dr. Grubb said this was my "normal" considering my diagnosis. Meds do keep me more stable (Celexa at 20mg per day, which, I'm told, is an exceptionally low dose). Nina

Hey there. I've heard Dr. Low describe the neck pain as having a "coat hanger" configuration; that is, pain and discomfort spread down from the base of the head, and then spread across the shoulders. I've experienced this upon near-faints. It's a very heavy and uncomfortable feeling. That being said, neck pain may be because of neck problems and not related to POTS--I say that as someone who's lived through that first hand, and has had 2 spinal surgeries. I have explained my situation in detail on my personal website (use the link listed in my profiel). DO NOT discount the possibility that your symptoms are a result of something else--do see your doctor and let them know of your neck pain. I can tell you that after many years (decades) of neck pain, it's such a joy to have days without that pain. Let your doc know that you're not sure it's actually POTS or something else. Sorting all that out, after all, IS your doc's job. And, if you're doc isn't doing that for you, may I suggest you find someone who WILL be a detective on your behalf. Hey, every little bit of relief from your symptoms is worth the effort! Nina:)

yep, I've sure had that happen. It used to happen to me everyday in the shower when I washed my hair, then when I tried to dry my hair (basically any time I put my hands over my head). It's happened to me at work, at the mall, pretty much anywhere I've had to stand more than a few minutes. Nina

I'm allergic to all antibiotics except tetracycline and its relatives. I'm also allergic to codeine and relatives, prevacid, and compazine. I get hives from head to toe and have respiratory problems--I've had full anaphalaxis as well where I lost consciousness. The worst reaction was to vancomycin that had been put into my IV line in the hospital...the nurse wouldn't listen to me as I kept saying "I'm allergic to that, please stop." I kept saying it and she kept saying it's not on my list...and I kept saying I don't care what's on the list, I'm telling you that I'm allergic. In hindsight, I now know I could have just held the iv line and kinked it so nothing would go into my body ...But, I guess she thought it was the morphine talking and so she continued to ignore me--I was only a few hours post-op for spinal surgery...I dozed off, and, about 20 minutes later I was blown up like a bloated lobster and couldn't breathe and woke up in a panic because I couldn't get any air into my chest and I was banging on the call bell like a maniac. I was swarmed by doctors, nurses, and I don't know who else and I heard the crash cart being parked in my door... scared everyone and myself too. After l-don't-know how many injections and some respiratory treatments, I was okay, albeit puffy and exhausted. So, yes, I'm WAY allergic, not just sensitive. Strange thing is that I never had allergies as a kid, but my siblings all did and grew out if it. Instead, I grew INTO it. Boogers. Footnote: the nurse who gave me the IV got fired. At first I felt bad that she got fired, but then I realized she almost killed me and should have listened or at least gotten a supervisor when I kept insisting she stop. Hmm...me, a professional jewelry maker? Sorry folks, you're going to have to wait until I finish grad school Seriously, every hour of my day is spoken for and I haven't made myself a new bracelet in months. But thanks for the vote of confidence. Nina

Here are links to the exact items that I use: Accu-Flex wire: http://www.firemountaingems.com/details.as...accuflex&GEN2=1 Crimp beads: http://www.firemountaingems.com/details.as...%20beads&GEN2=1 Crimp pliers: http://www.firemountaingems.com/details.as...%20beads&GEN2=1 Lobster claw clasps: http://www.firemountaingems.com/details.as...%20clasp&GEN2=1 handmade Bali beads: http://www.firemountaingems.com/shopping.a...?skw=KWBDMBHMSS Optional Jump rings: http://www.firemountaingems.com/details.as...%20plate&GEN2=1 They also offer plier sets which you can find in the "tools" section--the sets are a pretty good deal money-wise To get their HUGE catalog for free, here's the link: http://www.firemountaingems.com/catreq1.asp BTW, I have no affiliation to these folks, other than the fact that I order my items from them. Nina