delphicdragon

Sweet, sweet Elfie- My heart is breaking for you. WhatsWrongWithMe got it right, you need to ask yourself those questions. Being sick stinks. And, I think, you're young, and want someone there with you. I totally understand, I'm 25, and I remember those college days well. I stayed with someone who lied to me, treated me badly, and blamed me for being sick, because I didn't have the confidence to say "I deserve better". You deserve better! Your illness is not, in any way, your fault! You've got to remember that. You are a strong woman and deserve to be treated like a princess. You shouldn't have to put up with cockroaches or carrying heavy bags in your condition - it will only make things worse for you. I realize you don't see that right now, it took me a long time to realize that I needed to focus on ME first, before I could focus on him (or anyone). I thought that he was just trying to be sweet to me, but the things HE called caring, were actually not even close. I paid his bills because "the loan company screwed up". I cooked for him, I cleaned, I was there at a moments notice. He reciprocated only enough to keep me on his hook. He was actually making me sicker, in an insidious fashion. I had no idea! He was an amazingly popular man, who was loved by everyone. I was his accessory. My illness did not fit into his ideal box, and he did everything to sabotage my recovery (even deny me food I could eat). And it did progress into physical violence. I'm not saying this is the case for you - but it IS something you need to think about and have at the back of your mind. Look up Narcissistic Personality / Borderline personality disorder. See if he fits - mine was textbook. I hope you can take an account of why you're with him. If you start listing things like "he's the best I'll get" or "because he takes care of me" - take a second to rethink what you're saying. There is always a better man out there, who WILL take your illness into account and be a supportive force in your life. You should not define yourself by your man. Look at your life right now- if he were to leave, what would you have? He has isolated you from your friends (you hang out with his mostly). He claims you abused him when you were sick (yes, I got this statement too) How is illness abuse? It's not your fault you got the flu - would he have called it abuse if the tables were turned and he was the sick one?? I don't think so. I didn't want to be alone. I figured any man was better than no man at all. You may feel the same way - and that's okay. Being alone is scary. I hated it! But I needed the time to realize that I was the most important person in my life. You are first and foremost. Everything you do should be to make you into a better you.This is a huge concept, I know that. I'm not saying become conceited or egotistical - just focused on your own needs. If you're feeling cruddy, he shouldn't MAKE you go out. You should go out because you WANT to go out, and only you should make that determination. Elfie, if you have a good friend or a pastor who can give you an outside perspective, I urge you to talk to them. Even a counselor, but go alone first - and explain this to them - and see what they have to say. I know you care for him - that's clear, but does he care for you? PM me if you want to talk - I'll gladly share my phone number and we can chat that way too. Take care sweetie. I know it's a lot to process right now. Sara

I get Coat-Hanger Pain often. It's one of the first clues that I've been up too long. Lying down with my feet up helps as does getting to a horizontal position as soon as feasible. I haven't found a neurologist who treats it - nor have I really found a neuro who treats POTS. I'm being treated by an endo who isn't afraid to google. Sara

Thanks for responding.. I always respect your answers. Do you actually PASS out?? I do not. I ALWAYS say.. I feel like I am going to lose consciousness..get weaker..then weaker..s..l..o..w..l..y I can tell the health professional what is going to happen before it does..but once my speech is affected then my mental processing (I cannot pass mental staus test at this time..I just stare at them stupidly) I do not believe its passing out at the time..mostly cuz I can HEAR..and feel like I am awake and alert INSIDE my body. I am glad it comes across slowly..gives me time to get down.. not fall. I used to get or do get an aura..and then seizure like activity..cannot stop it. BUT this neuro in the ICU YELLED at me to stop.. that I was not having a seizure..and referred me to a psychiatrist. Man.. I cannot wait until these docs are patients one day...heheheee Jan Very interesting and able to be related to myself and my condition on two counts. 1) Blacking out v. Passing out. I have never passed out (gotten close) but never dropped. I black out almost every time I stand up, especially if I am going from a squat to a standing position. I can "function" blacked out. I can walk around, talk, etc - I just can't SEE! I assumed this was an annoyance as it's been happening since I was 8ish and I never told a doctor about it until college. Regarding the seizure-like episodes, I can feel them coming on too. And can tell people about them. Usually just tell someone to get me food- now. I've got maybe 3-5 minutes before the shaking starts and once that happens they take a while to subside. 2)I wish I could stop the episodes. I am so happy that the first neurologist I saw regarding them didn't just write me off as a psych case. (And I am so sorry that the dr you saw was so quick to do that to you ) They had no idea what was wrong, but were relatively certain it was organic. The last test they did on me during a followup was a poor man's tilt. My heart rate shot up and I blacked out. Still talking to them, just had to "wait until my vision came back." They sent me to cardio- which was a joke, but, I digress. Sara

Yep, in that boat too, but add shaking to the mix. I can hear but my eyes won't open and I can't move my body - other than to have tremors. It's what got me to the hospital and got me on my road to a diagnosis. Pain in the butt that when the ambulance showed up I was still in it and had 0 blood pressure - 5 minutes of jostling me about got the brain perfused again and my bp was 100/60 and I was wide awake and upset that I had to be transported to the ER. I think they are autonomic seizures due to no perfusion. There is no seizure activity during them. I feel awful before them, but after I usually feel better (maybe it's because I'm forced to lie down.) Eating something sweet or salty can fix this - often in one bite- before I go into these seizures, but I have to catch it quickly. Since so many of us have this, I'm wondering if it should be added to the symptom list. Sara

Best wishes for an uneventful surgery and a speedy recovery! Sara

I have a friend from college with EDS, who has been quite sick recently. She was telling me about her symptoms and suddenly I thought that she might have MCAD. Does this make sense for all those who have been diagnosed? Also what type of doctor should she see, (rhemy, allergist?) Her symptoms are... Abdominal Pain Diarrhea Possible Celiac?? Severe Asthma Musculoskeletal pain Blood Clots in the kidneys (which resolved) EDS Ocular Symptoms What got me wondering about MCAD was that she was complaining about regurgitation, and told me that it STOPPED when she started on Claritin again. I sent her info about MCAD and it seems to fit her, but I'm asking for second opinions, partially because I can't believe that I thought up something no doctor thought of during her last stay in the hospital. Thanks for input. Sara

I'd recommend that you eat if it helps the pain. I have a similar problem regarding my stomach and I make sure I abide to a strict schedule of eating something every 2-3 hours. (Sometimes more often then that) As long as food is in my stomach, I'm not in pain, or nauseous, so it's easy enough to just keep my stomach full. (I think this may be due to faster than normal gastric emptying, but I'm too chicken to get that tested.) Eat things that are healthy for you in order to not gain weight. I eat nuts, yogurt, applesauce and pretzels for snacks and they keep me pretty sated. Protein keeps me fuller longer than carbs as does fiber, so try to plan the meals accordingly, and never ever let yourself get to the point of pain! Sara

NuvaRing really gave me my life back. I didn't realize how bad the fatigue I was facing was until I went off it for 2 months (1 cycle) and was falling asleep by 9pm and unable to wake up until 10am. I was pale and lethargic and a royal ***** if you tried to wake me up. Now, back on it, I feel alive again - still fatigued, but only needing 8-9 hours of sleep instead of 13, and not having the blood pressure drop before my period started. I've tried oral contraceptives before and they always gave me gastro side-effects (more pronounced with the ones designed to stop my period) or copious bleeding. I've had neither with the ring - though I think I'm losing weight on it, which is weird, because I'm eating MORE. Sara

Hey Everyone- I haven't been posting as much as I've been feeling more like myself lately, but last night I got really scared. I've been going to the gym regularly for almost 2 months. I don't do anything strenuous, about 3 miles on the recumbent bike and some sit-ups. Weights are a no-no because of the EDS. Well yesterday I thought I'd do some time on the treadmill. I picked the pace up to a brisk walk - did that for about .3 of a mile, then kicked it up a little for a slow run. My knees started complaining a bit, but I was okay until severe left sided chest pain hit. It radiated all down my arm and I was apparently quite pale. When I got home I took my blood pressure. I usually run at 105/60 sitting and my BP was 130/85 standing and then 121/101 sitting. I had just had an echo, and my heart was found to be structurally sound. My cardiologist thinks this is a pulled muscle, because I was deconditioned, but I somehow doubt that. If it was muscular, wouldn't it still hurt today? I think I dropped out my pulse pressure and the pain was the heart squeezing without appropriate blood in it. I've never had a reaction like this on the recumbent bike, even when I push myself. What should I do? I want to keep exercising but the last thing I need is to be rushed to the ER from the gym. I was thinking of getting a stress test, but that will only tell me what's happening when I get the chest pain, not why it's happening. Does anyone else get chest pains like this? I've had them when I am upright too long, but never when exercising. Sara

I have the full article. Those who would like it, PM me for a pfd. Very interesting read, wish I could get my AngII levels checked. Sara

Which starts dropping fairly fast, the BP or the heart-rate. If it's the BP, that makes sense. Mine does the same thing, it jumps initially then drops out. If it's the heart-rate, then I'm not sure. I would find another doctor who specializes in autonomic diseases. Sara

Low progesterone here. And low aldosterone. Haven't had the other hormones tested, yet. It really was AMAZING what NuvaRing did for my energy and stamina. I can work again!!!! Sara

My age may play a factor in this (I'm 25) , but my cholesterol numbers are fine. Total = 162 HDL =63 LDL = 99 Triglycerides = 50 I also can't tolerate Beta Blockers, but this is due to Asthma. Sorry I can't be of more help. Sara

I know you've heard this before, but try to breathe. It does help in the long run, even if when you're upset you can't see the light at the end of the tunnel. PM me if you'd like. This disease stinks! (I wish I could use stronger words than that on here) You feel completely out of control, like your body let you down. And it's so hard to let yourself go from being independent to having someone take care of you. It's not just hard on you- it's hard on your family and friends too. POTS is, in my opinion, a disease of excessive adrenaline. Adrenaline is the fight or flight chemical. We seem to always be on edge/jumpy over little things, simply because our chemical levels are all ready maxed out and it takes very little to put us over the edge. If you are feeling stressed and overwhelmed, talking to someone might help. Perhaps a counselor who is well versed in working with people who have chronic diseases. Your family doctor might be a good place to start. Also, antidepressants can help some of us take the edge off. I'm not sure when you were diagnosed or what you are taking for meds though, so check with whoever is managing your POTS. A lot of us with POTS have trouble gaining weight, myself included. Carb loading is going to stress out your digestive tract (carbs seem to divert more blood from my brain, and drop out my BP). You can talk to your doctor about gaining weight or perhaps drink boost or ensure every day to add some additional calories. I eat at least every 2 hours, and make sure that there is protein in those "meals" more often then not. Also, please be careful driving when stressed. I get the chest pain too, and it makes driving almost impossible! HUGS! Remember this is just a blip in the road, and things will smooth out soon. Sara PS- Just because I'm curious, what did you buy the girlfriend?

I was probably born with. I have Ehlers-Danlos Syndrome which makes my veins extra stretchy. It took many years of actively looking to finally get that diagnosis as well as the POTS diagnosis. I think extra stress in college coupled with a strenuous work schedule triggered a few attacks and made me decide to get tested; however I think I've been feeling symptoms since I was 8 (~25 now) when I would black out if I stood up too fast. It was so weird when I found out that wasn't normal. Sara

Hey Everyone- If you have EDS and are a member of EDNF, you probably get Loose Connections which is a quarterly Newsletter. This month's issue, page 16, has an article in it that I wrote. It's called The Zebra, and it's about my journey to get diagnosed with EDS. Enjoy!! Sara I would post a link, but I think it's against copyright.

Though High Renin and Low Aldosterone does point to Addison's you won't get a diagnosis UNLESS your cortisol is also low AND doesn't respond to ACTH stimulus. I'm in the same boat as you. (My normal values are different, not sure why??? different lab perhaps) My Aldosterone is low (2, normal 3-16) and my renin is high (10, normal .5 to 6) and my morning cortisol was on the low side (8, normal 8 to 22) BUT my adrenals respond beautifully when given ACTH. It bumped my cortisol up to 30 from 8 and I felt wonderful. Because my adrenals responded, I was considered to not have Addisons, just hypoaldosteronism, (which, as far as I can tell, is not a disease in the medical literature). I was given Florinef to combat the low Aldosterone, and I couldn't tolerate the Florinef so I live with this. Hormone replacement, if you can tolerate it, IS the answer. My big problem with Florinef was that it activated a whole other set of hormones, that my then boyfriend couldn't deal with. Maybe I should give it a try again. Sara

I'm sure you're probably doing this all ready, but... When I was singing in a choir, we were always told to constantly be shifting position and flexing our leg muscles so we didn't pass out. I do this sort of thing now when I have to stand for more than 30 seconds. It really does seem to help get more blood up to my brain. Best wishes and I hope you feel better!!! Sara

I tried it for a while. Had some cramping from it. I found I couldn't remember to rub it in at the same time everyday and it really didn't help my periods/cramps. NuvaRing works great for me, as it seems to have a more local effect. I've also been told that inserting BCPs can minimized side effects, but I'm scared to try that! Sara

I do take Sudafed in place of Midodrine. Make sure it's the real stuff (behind the counter) not the phenylephedrine. It works well for when when I'm having a POTSy day, but not so much for the attacks. Ritalin was recommended to me as well, but we thought we'd try Sudafed first as it's OTC and I've taken it before. Like your wife, my heart rate is always high. For me the Sudafed tricks my heart into thinking it's beating too fast and then it slows it down (completely the opposite of what Sudafed normally does) Good luck to you. Sara

I hate PFTs! I also hate having to breathe deeply when the doctor is listening to my lungs. I get SO symptomatic, that I have to sit down for a while after. Usually, my POTS is pretty well controlled but deep breathing is a real killer. Plus, I have to have regular PFTs due to my asthma. *Grumble* Sara

Ana_22- I'm not offended at all, just trying to clarify things for you. This is a touchy subject for a lot of people because we were diagnosed as "crazy" even though there was something physical going on, simply because the doctor didn't have the knowledge to look for something out of the ordinary that might be causing our symptoms. I truly wonder how many people out there are being treated for panic attacks when they really have dysautonomia. (Ex- A friend of mine gets "panic attacks" that go away when he lies down; he was being treated with Benzo's not Florinef and surprisingly the attacks still occur - now he just lays down if he feels an attack coming on - his official diagnosis is panic disorder!) I would have to say that POTS causes panic - any person would panic with a heartrate of 160+! I don't know if you'll ever know which came first (chicken or the egg type of thing). Personally, because I have EDS as well, I think POTS is just part of the picture of the disorder. I didn't know what to call it when I was little - hence I called it feeling "stressed", now I know it's a POTS attack. Sara

I think that POTS and Panic Disorder are related, but in a slightly different way then I think you are implying. When one has a panic attack (without an underlying condition) the sympathetic nervous system (AKA the autonomic nervous system) is activated by the brain. In POTS, the sympathetic nervous system is overactive because of various physical signals. When the body thinks there isn't enough blood circulating, it forces the heart to beat faster. This is a survival mechanism. Before I knew I had POTS or EDS, I always had 'panic attacks'. I would suddenly get 'stressed' - my heart would race, my hands would get cold and clammy, I would get nauseous. I told my doctor about them and he asked what I was thinking about when these occurred. Usually the answer was nothing. Truth be told, there was no trigger, other than standing too long, but I didn't know that then. I didn't have racing thoughts associated with these 'panic attacks' or fear of death, just the physical symptoms. (I think because I got these at a very young age, I got used to them and could stop the panic associated with my heart beating at 160, because it had done that before and I had lived through it) There may be a corollary between POTS and panic attacks. I was diagnosed with generalized anxiety disorder before I was diagnosed with POTS, even though the psychologist felt that I didn't have it; but she needed to write down a diagnosis . Both cause the same physical symptoms - however panic attacks have an additional emotional component that POTS attacks don't. Granted, having a POTS attack can bring on a panic attack, especially if you don't know what's going on- but I think most panic attacks don't get resolved by laying down. Sara

I know that having my period makes my POTS worse. I need to be on some form of birth control to level things out. I hate that I have to be, but it has helped my energy level tremendously. My periods, before and after the diagnosis, were always 28 days, like clockwork. I got horrible cramps when I was in my teens, but they have since subsided to where I don't have to take Motrin for them. I would recommend a decent gyno, perhaps your hormone levels are very off and that is causing the POTS. It's worth a try... Sara

I hope that your boss knows about your illness, it's really important that you disclose it. I always wanted to keep my EDS and POTS from my bosses, but I found that for me at least, telling them made my life a heck of a lot easier. I can now just say that my POTS is acting up or I tweaked a joint and take the steps necessary to make it through the day, or go home if need be. Most bosses are very willing to make exceptions as long as the work gets done. Perhaps get human resources involved. There is no need why you should suffer needlessly. Perhaps have a chair to sit in at all times or be allowed to have water with you. You have to fight for yourself, and yourself needs to be the most important thing. Sara (In my prayers)