MelissaCrystal

My cornea specialist knows more about POTS and EDS than any other doctor I have talked to so far. Crazy huh? You find them in the weirdest places.

I hate when I always feel like I'm in a dream, or like I'm swimming. Ya know how uncomfortable it is for your head to be deep underwater? Ugh I know how you feel with your head not feeling right. I can definitely feel when my brain isn't getting enough oxygen. During my TTT it felt like my brain was being sucked out or drained out of my head through my eyes or something. So horrible. I wish I knew how to fix it.

I had an upper and lower endoscopy and they found irritation but nothing else. It was a waste of money =( I made the mistake of being vague and they didn't look for weird stuff like motility. I'm not even sure you can diagnose anything like that without having some other special procedures. So I have no clue what they're going to do for my GI issues--I haven't found a competent doctor yet.

I have those nights after drinking alcohol or smoking pot---I don't do either anymore, and I've only tried the latter a couple times and learned my lesson both times. Some prescription sleeping pills also do this to me, which scares the crap out of me. I also wake up gasping every 10 minutes when I'm sick or if I'm vomiting or dehydrated. I'm not really sure what causes it---seems like a lot causes it for me. Every once in a while it's just random and depends on how I'm feeling overall. I really hate it, it's scary.

My last psychologist -actually- YELLED at me and said I was lazy and wasn't trying hard enough to have a normal life (physically). I was so upset. It caused me to have a panic attack-- that was the last time I saw her. I got a new one, and she was appalled by the last one. No one should put up with a psychiatrist or a psychologist treating you badly. They aren't allowed to do that. Therapy is hard, but what she did was abuse.

I feel for you =( I haven't gotten anywhere with my University. I'm not legally disabled so they won't do anything special for me. I go to a private university though. I've been at it for over 4 years, and I only need a couple more classes, but they're the hardest ones. It's stupid, but I just can't handle the 3 absences=fail policy at my school. So I definitely feel for you and it does suck indeed that we have to work harder than normal people. I wish we had more help on this issue.

I'm pretty sure Paxil is extended release already, that's why my doc put me on it. Or maybe it's because the half-life is longer. Anti-anxieties like Xanax on the other hand, are not, and don't last long at all. You might need to up the dose if the regular 25 mg isn't enough to get rid of your anxiety all day. 25 mg didn't do anything for me.

Bleh, my doctor told me that the procedure wasn't going to be painful, just "slightly uncomfortable". I'm upset they didn't give me enough warning because it took me all week to recover, which they also didn't warn me about. I'd love to be tested for EDS but I need a referral to see those doctors and I'm just not sure who do get the referral from because all my specialists have their own agendas and their own opinions about what is going on with me. I've brought it up before but they usually change the subject, trying to tell me what else it would be that is causing the symptoms---and I only run into dead ends. I'll try and get a referral to get tested for it though. I'm glad you guys shared with me that it's common even with people who don't have EDS, so I'll try not to narrow my sights on EDS too much yet. Thanks guys =) As we all know, all of this is so frustrating.

My doc refuses to put me on anti-nausea drugs because she says they can do permanent damage to my organs and stuff. I haven't heard of the band though, I really need to find something that works....

My docs had me taper off Lexapro just to be safe but they said that withdrawal from Lexapro isn't as bad as other drugs. Paxil on the other hand, I'm having so much trouble getting off of it. I'm not sure why you're having so much trouble with Lexapro...you should talk to a doctor about it over the phone---can't always trust the internet. You might just be extremely sensitive to it or perhaps that family of drugs just isn't for you--maybe you're part of the small percentages that have trouble with it.

My docs tell me Lexapro is a very good drug because it has the least amount of side-effects with the least amount of people having those side-effects. So it is a very safe drug, supposedly the least addictive, and is basically handed out like candy these days because it is thought so highly of. So that's probably why he didn't hesitate to give it to you---anti-depressants can treat all kinds of things, not just depression, so he probably thought that you had nothing to lose to try it. That's also why he didn't do any tests before hand, none of my doctors needed to while trying to put me on it. It does nothing for me though, so I turn down every doctor who tries to get me on it. Lexapro is in the same family as Celexa, and doctors like them both, just fyi.

Yeah... I don't have much energy right now to describe the procedure (Bladder Endoscopy, Cystoscopy), but it was very painful, there was blood, and I'm still recovering from it. As soon as he started filling my bladder, I started panicking at the horrible pains it gave my insides---felt like my bladder was tearing and was going to burst. He diagnosed me with severe bladder sensitivity (which is supposedly why I can't hold any fluid and urgently pee every 20-30 minutes), but I'm thinking there has to be something wrong with my tissue that would cause my bladder to hurt that much while barely being stretched. Lack of collagen perhaps? Is this a possible symptom of Ehler's Danlos, does anyone know? I have other symptoms that may be related to it, mostly the magical dislocating hips and floppy ankles.

I have visual problems associated with POTS, and also something else called Macropsia/Micropsia (or Alice in Wonderland Syndrome). That can cause words you're reading to move or do weird things to your perception. I have very annoying episodes of this, especially when the lights are dim.

Aren't those cats very expensive and hard to get? They're so beautiful! I know a couple cat collectors and they love Bengal breeds. You're lucky to have such wonderful babies =) I love my kitties too.

Actually, letting the cat out of the bag is an American expression also! A very old one, used a lot =) We got it from you guys. Most everyone is definitely familiar with it though. You are so lucky to have such wonderful people in your life =)

You have such a beautiful family, good genes (I hope)!

I hope you have a kitty or a dog to comfort you =) That's the only thing that could help me in your situation, I am so sorry that you are going through this. After a while, you'll become stronger and wiser. Maybe just try reaching out to friends and making new ones, and perhaps a guy friend will come along who will end up being more. I think that is the best way to make a lasting connection. Friendship is much more valuable to me than butterflies in the stomach---for me that comes later as the friendship grows stronger. Someone will definitely love you and take care of you, just be patient and strong and take care of yourself in the meantime =)

My grandmother is pretty young and has had to have the bladder surgery twice now. She was so hesitant about getting it done the second time because her healing time was so slow. I hope you heal fast, because the surgeries are really worth it. They improved her quality of life SO much. I'm glad we talked her into it.

Hey, this is my first post in the Chit-Chat forum (Edit: got moved to Dys Discussion). I've been feeling down and worried lately so I thought I'd give it a try =) I read some of the posts here, and while some are very depressing (like boyfriends leaving =( my number one fear) and some are very happy (weddings! life breakthroughs!) I seem to have more of a depressing theme going on in my life right now. I'm facing a difficult decision with school, once again. It's been two semesters in a row that my health has been getting in the way of me completing my work. I'm an Illustrator at the Academy of Art University, technically in my 5th year since I couldn't complete last semester due to POTS. Now, I'm repeating those classes this semester, and I'm 3 weeks in, but I've already fallen behind due to spending too much time in bed and resting from nausea/fatigue. I've been really trying but my heart, body, and mind all literally and metaphorically are just not in it right now because of these health problems. I just don't feel well and I'm so tired of it, and I just want to focus on getting better and feeling better and enjoying each day at a time. It seems like I can't do that when I have to sit at my computer for hours with my tablet, painting an illustration. I get nauseated and I get stressed out (which is normal, but for me, it causes my symptoms to flare up worse). I have two choices.... Drop my classes before the "Drop without Fail" deadline, or risk failing the classes and try to pass them. If I fail one class, I get kicked out of school for a semester and cannot attend until another semester has passed. I just don't know if I should risk that... I'm attending a really expensive school on top of everything and my finances are dead right now due do not being able to work. The safe thing would be to drop the classes and focus on my doc appointments and finding a flexible job that can accommodate me. But that'd delay my graduation and give me less of an option for financial aid. I don't know what is more important at this point. I want to say my health, but my future is at stake. I may not be able to afford to finish up, which is ridiculous because I am so close. Each semester costs $7000 in tuition, and fin aid doesn't accept me if I don't take enough classes. They basically really really want my money, and I have no clue if I'll have enough to give if I wait longer to finish up. Eh. I don't know. It's just a difficult situation, and a depressing one. I'm a very skilled illustrator who at one point was very ambitious and passionate, but my medical problems have drained me of motivation. I don't even know if this the right career for me anymore because along with my health issues, the stress is just unbearable. I'm 60 thousand in debt from school, so it'd be like chopping off my leg if I were to switch careers. Ughhh. I'm sure you guys have been through situations like these. My school is a private school though so they're a bit more annoying to deal with than public ones. They've given me a little bit of leeway for my medical issues but it has never been enough to help me pass my last classes. I have no clue if I could petition some of my fails, but I've told myself over and over I'd look into it. It's all just so overwhelming right now. Right now my biggest priorities are my health and finding money to pay for the medical bills. I wish it were school, because I'm so close to graduating, but it just isn't in me right now and I really hope that isn't permanent. I'm wasting so much money by struggling this much towards the end. No refunds =/ I think I'm just going to have to drop them because it'll be impossible to get caught up again after missing work from 2 weeks in a row. It's just such a shame. My little brother just dropped out of college so my mom is freaking out about us. I know she understands what I'm going through, but it's painful for her to see it happen like this. I used to be very strong and determined but I've been drained so much. Anyone have any personal stories they want to share about school struggles with their health or life problems?

So the Occipital bone is two boney protrusions that stick out slightly at the base of the neck and the skull. It's a popular pressure point for massage therapists to work---a lot of people hold tension there and it feels really good when you press on the ligaments and muscles connecting the neck to the skull around there. I was getting a deep tissue massage over the weekend, and the lady pointed out to me that my left side's bone is a LOT larger than my right side. Not the muscle, but the boney part of my skull. It sticks out farther and has more width. When she pushed on it, that side hurt a lot more than the other one too. I can't lay down with my head facing my left because of that area, it just gets too tight and uncomfortable, so I only lay with my head facing to the right. I never noticed that this deformation was the reason for that. Thing is, many parts of everyone's bodies are not symmetrical. My ribs are all out of place too which makes sitting in some positions uncomfortable, but that isn't exactly a medical problem because a lot of people deal with that. In the past though, I've looked into different malformations that can effect the spinal fluid, and that part of the neck is one of the areas that I remember looking into. I've had an MRI a while ago though and my Neuro looked through it (quickly, might I add) and didn't see anything that worried her. No one else has noticed this enlargement, but maybe because it's too normal to even look into. Anyone else notice symmetry problems with the back of their skull where their spinal chord connects (bone, not muscle)? Has anyone ever had a doctor specifically check that part of their neck? I'm being checked for so many possible causes of POTS that I feel like a hypochondriac sometimes so I want to run this by you guys first before I even think about mentioning it to an intelligent doctor ;p It would be interesting if any of the Chiari people could chime in about their physical defects.

So, I drank a bottle of water before traveling to the Urologist today, and gave my urine sample. It didn't look at light as it usually is, but the doctor said it was extremely diluted. I told him how much I drank, but along with my frequent, urgent urination (but in small amounts...not large amounts of fluid coming out), he wants to look into it some more. With his eyes. I guess my basic urine tests were normal overall despite the dilution, and he told me the next step is a bladder endoscopy. He rushed me out of the office like so many busy specialists I see always do. I didn't even get to ask what the procedure will be like, and if they have to put me under or anything (anesthesia doesn't work on me so that might be a problem). He mentioned that he's going to look for cysts, but there really aren't any another tests for that? And isn't diluted urine a sign of a kidney problem rather than a physical bladder issue? I tried googling these questions but I just end up getting results that have to with passing drug tests. I was wondering if any of you had to go through this same thing with a urologist after they found out about your abnormal urinating habits. Only thing I found on google was info on Diabetes insipidus (sp), which I hope they test for. Anyone ever have a bladder endoscopy before? If so, can you tell me about it? One more question, just in case anyone knows--- if the urologist doesn't find anything wrong with my bladder, is his job to investigate into the kidney functions/hormones, or do I need to see another specialist for it? This all will probably end up just being blamed on my nervous system acting up, but I'm seeing a competitive doctor at Stanford that barely has time to see patients, and in the mean-time I'm seeing specialists for my symptoms just in case they can find something (like the cause for my POTS/Dysautonomia) before Dr. Friday can.

Are you diabetic? I've had blood sugar readings that low as well and I feel very bad during those episodes. What the heck causes that? I've never been diagnosed with any glucose problems and I have never had any basic metabolic panels that showed diabetic tendencies. Why was your blood sugar so low? Is that something to worry about?

So it sounds like it's pretty typical! That's really interesting. I wonder what caused it since my BP was okay. That's sooo weird.

I was just wondering if anyone experiences a feeling of being strangled as one of their symptoms. It's one of my most horrible symptoms because it sort of gets in the way of me breathing and feeling like I have enough blood in my head. My BP is fine during these episodes (90 over 70). It's worse when I'm working against gravity (like standing up). Anyone? I wish I could stop it.

I'm extremely angry about this. Wow, I have to make this post short before I get too angry. Please, please go to court about it and file a complaint against the officer. He needs to know PERSONALLY that this is illegal and he is not the judge of who is disabled and who isn't. That is a doctor's job. That is all I have to say before I pass out from being too angry.