MelissaCrystal

Thanks for the great advice, all of you. I have had lower back problems in the past so this is definitely a possibility. I'm going to look into and see if I can bring the feeling back =) Thanks so much, I'm no longer worrying so much.

Lots more blood goes to work for my stomach while I eat so I shiver and sometimes my limbs get cold.

Do you think it can be compressed even when I don't feel any pain right now? I guess it's definitely a possibility, especially with my hips. But I haven't really had a problem with them lately. Unless they're numb too and I just don't know it yet lol

It feels like my heart does painful flips and hiccups, and my doc said that was just some pretty bad palpitations, but I'm pretty sure it'd show up as something more on an EKG, they've just never been able to catch it on a EKG. I hope you won't experience that too much more! Good luck with your cold, please take it easy on yourself and your heart =)

I bet that's going to be SO rough for the first few months, hah. Throwing up, passing out, awesome. Definitely worth it in the long run though, I'd say. I've noticed that my new job involves more getting up and down than I'd like, but I'm getting a little better at keeping blood in my head as time goes on. I guess that works on the same principle.

Hey guys, So I'm a little confused as to why my big toe is numb. It doesn't feel like a circulation issue because it doesn't fluctuate when I get my leg massaged or anything, but it's similar to what happens when I lean on my elbows---my pinkies go numb. They aren't tingly or anything, just completely numb, almost like a nerve pinch. I don't know the cause of my POTS yet, so I have no clue if it's possible that I have nerve damage (I read the nerve damage thread posted earlier and I couldn't really relate to it because I really don't know what I have =(..) What I'd really like to find out is if any of you have experienced temporary loss of feeling for as long as 2 weeks on any of your extremities. I really don't know why this would be nerve damage---none of my doctors thought I had anything serious, which of course makes me angry, but I'd assume they'd find anything if it was going to cause nerve damage. You know? They never thought I'd get worse---I am getting worse, but I'm no longer seeing those specialists because they admittedly knew nothing about Dysautonomia. I'm going to look for some B12 because I saw that mentioned...might as well try it. But if you guys have any other advice to get back the feeling, I'd really appreciate it. It feels disgusting, like it isn't a part of me anymore. It is numb from the small joint to the big joint in my foot, and sometimes it does spread in the skin only to the top of my foot. I can feel pressure on the toe, which is the disgusting part, but the skin and muscle are numb. I've tried hot water, massage, time---can't really think of anything else. My back does not hurt and there are no other indications of a pinched nerve. I wear comfy shoes and I am not overweight. Any ideas? I'm so tired of telling my primary these sorts of things because she never knows what to do. I see Karen Friday at Stanford on Jan 22nd, so I might have to wait until then.

Melissa, Melatonin will lower your BP and HR, so if you have orthostatic hypotension, it WILL make it worse. When you say that it is the only thing that puts you to sleep...how much do you take and when (immediately before bed)? Have you tried other sleep medicines (Ambien, Lunesta, Sonata...)? Have you seen a sleep doc? If you have a circadian rhythm disorder then melatonin is the only thing that will help you sleep, you are just making it naturally at the wrong time and then adding too much by using the supplement. My sleep doc pointed out that artists and computer programmers are notorious for having circadian timing problems. If you stay up till you are sleepy (1-3am?) and then go to bed, do you get to sleep OK? Is it really hard to get up in the morning? Melatonin and it's action are not fully understood by scientists. It does much more than just tell your body when to sleep. It acts directly on the hypothalamus (center of control for the ANS), but it also effects many other systems. As exquisitely sensitive as our systems are, it makes sense that anything that effects our nervous systems will be magnified and change our symptoms. I could never use it for my circadian rhythm because I couldn't take it regularly--got too tired all the time-- for me it actually works instantly...I start to get drowsy and my BP lowers a bit which really tires me out (or makes me weak). For some reason my nervous system is just typically stubborn and doesn't react to any SSRI's, sleeping pills, numbing agents, sedatives, and anesthesia. I bet a lot of the people on the forums can relate--ugh, so annoying. They don't react to most things, but then every once in a while I find something that it overreacts to--like vicodin, pain killers of all kinds, some depressants, pot, and alcohol. Never ceases to amaze me how backwards out nervous systems can get---and how POTS people can be polar opposites but with the same base issue. Hopefully someday we'll figure it out =p

I've freaked my docs out before by losing 20 lbs in 2 weeks---I'm sure that's common for a lot of you unfortunately! I hate it. It doesn't seem like I even lose weight either---at least in shape. My skin just feels looser. Gross. In the past 4 years I've ranged from 115 to 150 lbs up and down. Hopefully my stretchmarks will eventually look pretty ;p

Growing up I thought this was normal---it hasn't become a problem with eating for me yet but it's annoying! I have to like focus on swallowing, and it's so difficult to get it started sometimes.

Oh boy, I was conscious the last two times mine dislocated (either hip each time ><), so I can't imagine the shock and pain poor flop had when she came-to. Oy. I'm so sorry, I hope they're able to get it back in with no complications and as little pain as possible!

So many people in the hospital right now! I hope you're out as quick as possible =) I'm sorry for taking your post the way I did--my wording was off, I definitely wasn't upset--hard to tell from posts sometimes. I just wanted to make sure no one was going to be afraid to post because of possible bitterness, of course I wouldn't be able to tell by one post how you feel, I hope you don't think I was -calling- you bitter =( I just wanted to make sure -if- there was bitterness that there wouldn't be any fear of posting. I hope you feel better and heal quickly!

Does Melatonin actually make some of you guys feel better? I'm worried, because yes, Melatonin is the only thing that puts me to sleep, but I'd never ever take it again because I get lasting effects from it that can last for up to 2 days--makes me feel extremely tired, weak, low BP, dizzy, and trouble breathing. I hope none of you guys are making your symptoms worse than they are. =( I know things effect everyone different, but I was taking Melatonin for a while without realizing it was the cause of my horrible POTS episodes. It's exactly like my POTS episodes, which was confusing, but it was definitely the melatonin that was causing it.

I hope that it'll be corrected soon! People with Chiari malformations very often recover completely, so I hope you will be one of those people! I'm sorry that it puts a damper on your teenage years though =/ I hope your MRI results show your doctors what needs to be done, for the sake of having something to correct! And if your MRI is clean, I hope that it'll just take some time for your nervous system to correct itself! There a lot of tips on these forums to living better with POTS, I really hope you're able to find solutions =)

My tendons are pretty tight usually in my legs, so I can't do much there, but I can do a lot of weird stuff with my hips (full anteversion of both hip joints), I pass the skin test, and I also pass the thumb-to-the-arm test on both hands. I can overextend one of my shoulders, too, and I have atrophic scars and stretch marks while I am not overweight. My fingers flex backwards, but I can't touch my pinky all the way to my hand. I can do lots of other finger tricks though. I've noticed there are different tests all over the internet---one of them I pass, while another I might not. I've had hip dislocations on both legs (and I'm 22 and otherwise healthy), and I have lots of joint problems in general (loose ankles that wobble and are unstable, bad knees to where I have difficulty with stairs, and very achy joints at night along with carpal tunnel syndrome in my hands). So the test idea just confuses me--it has to be different from case to case, right? I'd love to know if I have EDS, it'd save me a lot of money and trouble. I just hope that if I do get diagnosed with it, they won't wrongly diagnose me with it and ignore all the other possible causes that may be curable. Do you worry about that? You're probably positive you have it though, while I'm not convinced either way =( Is this the test you took? http://www.arc.org.uk/arthinfo/patpubs/6019/6019.asp Cause I failed that one. http://www.arc.org.uk/arthinfo/medpubs/6527/6527.asp I pass that one, but it doesn't exactly say it is a test.

Melatonin changed my life, but not in the way most people would think ;p I've been chronically ill since 6th grade, but I never knew it was Dysautonomia until I had a horrible reaction to Melatonin and couldn't function the next day. I looked it up on Wikipedia, and low and behold--POTS and Dysautonomia! That's when I started going to specialists to find out if I had it, and turns out I do. Yayyyy, melatonin, thanks for making me really sick =) I'd probably be labeled a hypochondriac and living with my mom if it wasn't for that discovery.

I found a bunch of at-home receptionists and data-entry work on craigslist. But perhaps a temp agency will be able to do more looking for you---there has to be some telecommuting jobs in your area. I'm so sorry to hear about your hardship, I hope you find some relief.

Well, see it's odd because my skin does that--maybe even moreso, but so does my boyfriend's. I'm just kind of confused. I can't figure out what is normal ><

What do you mean buzzing? Like an actual tingling feeling, or a drunkenness?

I just made a post in the other compression wear thread on the front page---there is a bunch of compression wear on Amazon that may be worth a look. Three brands looked good to me, Marena, Ardyss, and Lipo in a Box. There are a couple that are certified compression-wear. Good luck in finding the one right for you!

I've had doctors tell me the same thing---it's their response to people they believe are victims of somatization. Finding a hobby and such is a treatment for hypochondria. Unfortunately, POTS patients get this a lot---you just have to ignore it and move on to another doctor that won't give up on you and give you an easy diagnosis of anxiety. Sorry that you have to deal with your doctors saying that =( It frustrates me just as much.

Spanx are too thin for me, but there are three brands on Amazon.com that have good reviews and some of them are certified compression wear. They're Ardyss, Lipo in a Box, and Marena. There may be a couple others but those are the ones I was looking at that cover the areas I need compressed. They have good reviews, but I have not tried them myself---anyone have good results? I think they're worth looking at/trying.

It took about 2 weeks to get used to my beta blocker and have all the bad feelings go away---it was like night and day after 2 weeks, huge difference. It was worth the wait at the time, but after 4 months it made my BP too low on average so I had to go off of it. It was horrible getting off of--just like those first two weeks. But once your body gets used to it, you should be able to tell if it is right for you or not. Some people can't get through the transitional period, but good luck to you, I hope it will be worth it! Made a huge difference in so many peoples' lives.

Ohh, the stretchy skin is one of those definitive aspects, huh? Mine is stretchy but I have no clue what is normal. My boyfriends seems to be just as stretchy. So confusing ;p I'd be curious to see a pic of the skin being stretched on your hand, if you have time? Is it like those extreme google pics, or is it sort of in-between? Maybe I'll take a pic of mine to ask for your advice, hah!

Oy, isn't it annoying how stress causes episodes like a domino effect? I'm so sorry you're in such bad condition right now. I hope you recover fast from those bruised ribs, that must be excruciating during every cough. If you need more help with the forums, you should get some of the other mods to recruit maybe. I'd hate for a support forum to cause more stress to you than support!

I'd love to figure out it I have EDS. Did they diagnose you just by using the flexibility test though or are there further tests? Because if I just used the flexibility test, I could diagnose myself with a yes, but I want to make sure there is further testing before I rule out a lot of other stuff, you know? I want to make sure a trip to the EDS doc will be worth it--because I'm seeing a Dys specialist in Jan, and I guess I could go to both. Did they use a skin test or gene test or anything?