Lukkychrm42

I love Airborne- I think I've taken it twice and it's been great. I don't usually take Emergen-C for colds, but sometimes when I'm more fatigued than usual for a bit of a vitamin boost. I take a multivitamin regularly, and I can't say it absolutely helps, but it certainly can't hurt.

Hi Melissa, I hope you're feeling better soon. Take lots of care- we miss you!!! So does your fishbowl. I'm sending lots of love and hugs and happy thoughts. Love, Megan

I had versed in May, and it made my BP bottom out, so they woke me up, and so I had both the colonoscopy and endoscopy awake. Apparently versed can do that, but that was the first time I'd had it in recent years to my knowledge. As far as the position goes, I'm pretty sure they have to do it on the side, but maybe if you talk to them about it they can use pillows and things that might help stabilize you? My doctors were well-enough experienced, and had me on oxygen and IV saline during the procedure, but I still didn't do well on the versed. They were doing demerol for the pain, but I still remember all of it! Swallowing the tube awake kept making me burp. I was still on my ProAmatine at the time of the procedures. Good luck!

Hey Perse, I've got fibro as well, and so do my sister, mom, and grandmother. I actually didn't know that cymbalta would help with the pain from it, but I'm glad to hear that you're doing a bit better. Have you ever looked into biofeedback? I haven't done it myself, but I've heard good things from other people. My sister used to get prescription massages for hers, but for her, the main symptom these days is fatigue. I also believe that mild exercise can help with the pain, and so can physical therapy. The only painkiller I've ever been on for a significant amount of time is ibuprofen. Frankly, I've tried going without it only to collapse to the floor in pain. Bring on the nurofen!! At any rate, I hope you find some combination of things that helps. Take care of yourself, and have a great term!!!

I've heard of it. I'm glad the neuro-types are at least interested in what might be going on. Fluid retention can cause high BP, and it seems strange that despite the ddavp there would still be such eye dryness. Is it possible that you need a higher dose of ddavp? I don't know if you can become adjusted to it. It just seems strange that if the ddavp is helping so much with your whole body except the eyes. I know they check eye pressure to check for glaucoma (it runs in my family, but my eye pressure is normal), but since the reading was high did they look into that part further, or only into the central insipidus link stuff? I know that diabetes mellitus can cause blindness, and I wonder if it's a similar problem with diabetes insipidus? I don't know what they look for before that, though. I'm sorry you're having to go through this, but I hope you get some answers and help soon!

Hey there- I suspect the "normal" people you were with would have felt the effects had you stayed longer. The lack of oxygen in the air means your body has to work that much harder to pump oxygenated blood around, and it was probably most immediately noticeable in your breathing, though I'm surprised you didn't notice your heart racing, unless your meds are good at keeping HR low. When you're breathing air with less oxygen, it can feel like you're not getting enough air in, so it seems harder to breathe. I'm from sea level, and whenever I come out here to Colorado to school, I spend the first few days getting used to 1) the altitude and 2) the dry air. It's only just over a mile up, but the mountains are right there, next door. I have difficulty breathing sometimes, too- such that it feels like I'm not getting enough air. Often, but not constantly, and it seems to be POTS-related. Anyway, the other problems associated with high altitude aren't always immediately noticeable. Usually you feel quickly like you're doing exercise, but it's not until a few days later that you might get the headaches, nausea, etc. It's very important at high altitude to drink lots of water. Not that you wouldn't do it anyway!

So just out of curiosity, if the doc writes a prescription, I suppose it will say "as needed" or "daily" or whatever, and then how do you go about getting it? Will you be ordered to just go to the ER or urgent care or whatever anytime you need them, or if they're ordered for daily, would they do that without a PICC or port? And if you get a PICC or port, will they automatically set you up with the pole, supplies you need, and order for home health care or standing orders to go somewhere to get it taken care of every few days? I need to do something, but IV saline hasn't really come up as a solution other than when my GI problems warrant it... and the docs are moving really slow when it comes to something like DDAVP which I am sure would help. Will get back on it when the semester starts! (on student health plan with on-campus care.) Thanks!

I'm so sorry, little fish. I am so incredibly hopeful that you'll kick the stupid sepsis's butt ASAP!!! I hope you're feeling better soon, Melissa. Lots of love and hugs!!!! Megan

Susie, There are several Vandy-related topics already here if you do a search for Vanderbilt.

Most of us who went there for 2 weeks did so as research patients. A couple here, I believe, were sent to see the docs there, but ended up being admitted as research patients. I believe they can do all the autonomic testing on non-research patients, but if your insurance is not willing to pay for it, it may be prohibitively expensive. To apply to be a research patient, all you have to do is go to their website, print out the forms, fill them out, and send them along with some records. If they're interested, they'll contact you. The med trials and whatnot are what took so long, because they do just one or two trials a day, but these I THINK are strictly part of the research protocol, although I don't see why they couldn't have you try out some of the drugs (all FDA approved, just not necessarily for POTS) on their watch... if you are expecting more than the autonomic testing, maybe you can communicate with someone there (as well as your doctor) about what it is you're looking for. Good luck!

I'm so sorry- I've been away for a week, but I've been thinking about all of you!! Melissa, I hope you're doing better soon, and I'm sending you heaps and heaps of love, happy thoughts, and hugs! XOXOXOX

That is interesting. I remember that this seemed to be your interest earlier, too. Doctors performing tilt table tests are supposed to monitor the HR during- that's the reason for the EKG. Most POTS cases will go into sinus tachycardia, which is what they expect, and I have been told that a doctor who looks at my EKG may think there's atrial fibrillation, but it's not, and with the POTS it's "normal". So, a doctor OUGHT to recognize what type of tachycardia is occuring upon a tilt, and seeing anything out of the range of what he or she would expect, ought to look into that. There are a few on this board who have additional heart complications other than MVP that cause other arrhythmias, related or not, and hopefully they are being properly treated. We know that there are patients for whom POTS is secondary, which you can see in various articles including Dr. Grubb's more recent ones... Hopefully they'll look into this particular issue more carefully and may know more what they're looking at. It seems to me, though, that POTS that is related to dysautonomia is what most of us are here for, and something that looks like POTS and smells like POTS but isn't quite POTS might find more answers in further studies, soon hopefully.

That's interesting. The "look" I'm familiar with isn't so much HEDS as dysaut (particularly in adolescents). Supposedly it's common in adolescent onset dysaut to be tall and skinny, with the idea that the ANS hasn't caught up with the growth spurt yet... as well as some other traits. I know that tall and very slender with long legs, large hands, etc.. can go along with Marfans, but Marfans is very different. I was diagnosed by a geneticist after being told by both my dysaut. specialist cardiologist and my rheumatoogist that I had HEDS- based on family history, the Beighton scale, and clinical findings. HEDS has no tissue biopsy available for diagnosis- as opposed to the vascular type, and maybe a couple other specialty types (not hyper, and don't remember about classical.) Definitely check out the EDNF links that others have added for you! While the HEDS comes from my mom's side, my dad's side gave me my body type- short, stocky, muscular, med-large skeletal frame... my sister's the same. My brother's the only tall, skinny one, and he doesn't have POTS, though he probably has HEDS.

I understand the frustration that it must cause taking 36 hours to get in 3 liters. I don't do it daily, but when I get fluids, it has to be done slowly just because if they do a liter or 2 over 2 hours, I just spend the whole time peeing it out, so it does no good anyway. As to the other POTSy problems or the other symptoms you mentioned, I've never heard of those in particular in conjunction with getting fluids... Even 3 liters over 12 hours for you? This will probably sound really off the wall, but if you're getting a rash if you infuse too quickly, is there any chance that you might be having some reaction to something like one of the plastics... or even the salt (does saline for infusions exist in multiple concentrations?) or something that would give you whatever irritant in a higher concentration when you infuse quickly? I realize I'm grasping at straws here... Also, if the saline is too cold, I find it gives me a headache. Hope you're doing better soon!!!!

It's not just for hyperadrenergic types, though. It can be useful for them to see what your body chemistry is doing in particular. They might look for other catecholamines besides the NE, too- various hormones and metabolites which might be way off when you're changing position.

Yups indeed- when we change position, our norepinephrine levels often jump way up, which is often what we refer to as that adrenaline rush that helps to cause our POTS symptoms. There are other similar topics, so i'd suggest doing a search for it. Good luck!

Hey everyone, I hope you're getting ready to have a fun weekend, whatever your plans may be. I had an appointment with my dysaut. doc yesterday that went well, but we decided to try something else. Because my symptoms indicate overaction of the sympathetic nervous system, he put me on labetalol. He was especially interested in my hot flashes, excessive sweating in certain areas, and other symptoms, more so this time anyway, and looked at various spinal cord charts and things like that. Right now I'm pretty shaky and tachy in general, but if this doesn't work, there are still other options. Anyway, I looked up labetalol and dysautonomia on the web, and came up with paroxysmal sympathetic storm- and it pretty much describes my symptoms exactly- as opposed to some dysaut. patients being parasympathetically overactive. Am I right in thinking that this is what happens in my body to cause my POTS symptoms when I stand up? That might sound really obvious, but to me it could explain why it's POTS in me instead of NCS, and other things like that. Anyway, any info would be appreciated. Take care!!! Edited to add: I did a search beforehand and came up with nothing, but just looked up storm and found the old post in which Nina clarified "autonomic storm term." I guess I don't really know if the increased mortality associated with a true storm accompanies primarily those with head injuries or FD... and those with whatever has caused the POTS might experience them in a less severe way? Especially since it's my understanding that patients with FD have difficulty producing sweat or tears, and so I'm not sure what would cause the system to go so haywire as to cause the hypertension, hyperhidrosis, etc.. obviously I need to check this out some more!

Hey there! I was just switched from betaxolol to labetalol yesterday in hopes of the combined alpha/beta blocker being better able to curb the adrenaline rushes... I described my "hot flashes" more in depth, and he was very interested in the fact that I sweat consistently in two odd places a LOT, and related it to the sympathetic nervous system... the new drug isn't necessarily supposed to work miracles, but I'm giving it a try. I only took the first one about 4 hours ago, and I wasn't expecting to notice anything right away. But I've been really shaky all day, though not chilled, nor feeling like my catecholamine shakes. And my HR has been quite high resting. Hopefully this bit won't last. I guess that's what vacations are for- trying out new drugs!!

It does seem abnormal that they gave you the med supine, but to be honest, I'm a little surprised that they gave it to you at all. To me it seems more common for those suspected of NCS to induce fainting. It does seem more likely to cause false positives that way, although even the TTT system isn't perfect without the injection. I had the sublingual med during my first TTT when I was suspected of having NCS, but the second time was med-free. Even though your rates were pretty wild, it seems that they'd have to tilt you for a TTT to be accurate. But I'd guess that if they know what they're doing as far as TTTs go, then they probably just wanted to keep you as safe as possible while still doing the test. I hope you get some answers soon!!

Hi, I was just wondering if you actually know that you are sensitive to gluten, or if you're just eliminating it to see if it helps? Just curious. I tried cutting it out a long time ago, and unfortunately I didn't notice any difference... just the darn autonomic neuropathy causing my bowel problems. Grr. (According to my Gi doc.) So yeah, Whole Foods will definitely have lots of goodies for you. There are a whole lot of grains out there that you might not have heard of, but are delicious and very nutritious, too. I love quinoa, and it's packed with protein. Unfortunately, it might be the additives in prepared foods that are more difficult to spot: things like hydrolized wheat, starch, or vegetable proteins, anything malt like Nina mentioned, soy sauce or tamari (check out wheat-free versions or Braggs amino acids.) It can be difficult to master the art of baking with rice flour, but after some tries, you will learn there is plenty of good food in the gluten-free world! Just to note- EnviroKidz makes a gluten-free vanilla animal cracker-type of cookie, that's square shaped. It's sold alongside its chocolate companion, but the vanilla one is the gluten-free one. (And addictive and better than the chocolate!) And check out other local health food stores or cafes, as they might have a wider variety of GF products and even menu items. (the co-op in which I work serves regular GF cakes as well as veggie and vegan lasagna, soups, and other main dish items.) I suspect that the irritability was mainly either from a sense of deprivation or your body detoxing. Hopefully you're doing better now.

It can make me more symptomatic. I don't abstain 100%, but I only have a drink on very rare occasions (holidays- every couple of months). When I do drink, I make sure to eat salty foods and drink lots of water, because alcohol is dehydrating. Also, it seems to kinda counteract the ProAmatine, so considering I pay about $7 per pill, it's really not worth it since I can't go without it! LOL.

I would just like to see them, so for them to make the effort to pop 'round for a bit just to hang out is special. If you mean more in a day-to-day sense, it would help if every once in a while asked if I had an errand that needed to be done, or if I need something from the shop, or a quick task around the house that I can't do. Now what would make me melt a bit would be bringing me a book or movie to borrow out of the blue... and not being upset if I'm not able to hang out then and there. Even calling just to say "how are you?" is pretty special. These aren't things I actually expect- certainly not on a regular basis. I just mean that someone who does these things of his/her own accord is a very special person!

Yes, BBs can slow down your HR a lot, including your resting HR. I have a naturally low HR at rest, and when I take BBs I have to be careful. My HR was dipping into the thirties at times, and my doc halved my dose to keep it up higher! Also, athletes tend to have lower resting HRs. For a healthy, active person, 40-60 can be very normal.

That's great. I'm so glad you've found a good one. And best of luck with the Neurontin and physical therapy! I hope something will help besides painkillers. If you don't mind my asking, I am just not sure if the muscle spasms are chronic for you with bad back problems? As in, is the medicine to treat nerve pain itself and help the spasms, or do the back problems cause the nerve problems? Sorry- am a bit tired and foggy at moment. Good luck, anyway!!!

If you think there's something else going on, it might be worth pursuing. Such as checking out the possibility of this conduction defect. But POTS is a condition- I often refer to it as dysautonomia to clarify that there's more going on than just the POT, but there are a lot of people here for whom POTS as it is diagnosed IS primary. It's true that there's definitely a long way to go in the science, and in some generations, there may be different names for different types. My EDS was diagnosed coincidentally, too, and I am treated as a POTS patient. My medications are to treat the symptoms of POTS.. which reaches the logical conclusion of their treating POTS as it IS a syndrome. That's another reason to call it dysautonomia. While there may be an underlying cause, and it may be very important to find it, there's no guarantee that treating the underlying cause will cure the POTS. I'm afraid you might be expecting answers that we may not know for another 50 years. That being said, I think it might be very helpful for you to see a specialist. Dr. G. for example is an electrophysiologist, and maybe between an electrophysiologist and a neurologist, you could, get some more definitive answers. As to the primary versus secondary problem, as far as treating the POTS symptoms, I don't think it really matters unless you determine that there IS a specific problem such as hyperadrenergic or baroflex receptor or other more difficult to name issues- because the severity of the POTS symptoms can be as debilitating for either. Therefore the treatment of those particular symptoms can be as helpful to one as to the other. And finding the right med. combo is a process. And a specialist will know more about how to treat things beyond just the POT bit. POTS is a well-established diagnosis, especially considering it's only been around as such for 13 years. It may not be well-understood or well-known, but there's an awful lot of scientific data out there to back it up. In my opinion, a person who suffers from a "syndrome" might not respond to certain meds because: they're being treated for symptoms common to the diagnosis but not necessarily appropriate to the person, or because there's simply not enough out there to inform us of different kinds of medicine. This is one reason that going to a specialist might help. Don't forget- the only thing that is normal in POTS is that there IS no norm. No 2 of us have identical cases. I'm sorry if this frustrates you. Most illnesses are not completely understood- treatments that cure one person do nothing for the next, genes continue to mutate, and most people try several types of medicine for various conditions (infections, high cholesterol, asthma..) before finding one that helps more than the others.