delphicdragon

Had one of those a while back. Some Motrin (800mg) took care of it, but it was weird. It lasted three days (Until I got smart enough to TAKE the medicine) and caused some weird vision problems. Probably a migraine of some kind I would think. One neurologist I had said that most headaches are migraines. I think she's wrong but it may make sense, since we're all quite susceptible to migraines. Sara

My father had one after a wrestling accident in college (many years ago). Primary symptom was GERD. But, in the accident he also cracked three ribs and collapsed a lung, so we're not sure which caused which. The valve on top of his stomach was destroyed completely. Sara

Right before a POTS crash I get really emotional and generally angry. Once I am horizontal again, the emotional symptoms go away. I take it as a sign that my body needs to be horizontal - NOW! Otherwise, I've always been an emotional person. POTS doesn't change that. Sara

I have always been super sensitive to meds. I need just a tiny dose to get the effect for some and ten times the "normal" dose for others. I thought it was the Ehlers-Danlos that made me like this. Narcotics don't cut pain for me unless they knock me out, same for analgesics, like novicaine at the dentist. Antibiotics and such destroy my stomach before they kill the bacteria and I need just tiny doses of Benadryl or other over the counter stuff to have a significant effect. Sara

Sadly it's not just with us. I think they treat everyone like this. As you probably know, my dad is getting Chemo for pancreatic cancer. He was having difficulty breathing and called his pulmonologist. They said they can get him in to see the doctor in 2 weeks. Dad says, not acceptable. So they give him an appt for "today at 3:15 in Avon" (about 45 mins from our house). Dad gets in the car and I take a half-day at work to drive him to the Dr. We get there and there is no one in the office except one receptionist who tells us that the Doctors don't come in on Thursdays. Dad about flipped. The person who made the appt told him today but meant tomorrow. Okay, I can understand that this was a mistake, etc. Dad calls her on it and she rips him a new one, "I never make mistakes, you misheard, you're crazy, etc" And she hangs up on him and cancels the appt for Friday. We found that out this morning when my dad called up to make sure the appt was scheduled. There was a nice nurse who got him his appt back - but seriously, what the heck? They shouldn't be allowed to get away with that! If I ever went off like that at work, I would be in employee counseling or be asked to leave the job. It's SO not appropriate. Sara

A couple things of note. (TMI alert) The gastro symptoms I don't really mind sharing as unfortunately WAY TOO MANY people on this site have the same / or similar things. I get the fast heart rate, the sweaty palms, and severe nausea along with cold chills. My stomach starts getting angry, usually very painful and gassy. Next, I get severe diarrhea (usually about four episodes). Once everything is out of my system I start to get warm again, starting at my hands and working up into my chest. The shakes stop and the stomach pain stops and the heart rate slows down again. This whole process takes about 1-2 hours, though I have had it last overnight. (Almost always hits early morning (if I don't get enough sleep) or late at night.) I guess they aren't really gastro episodes, but whole body freak out episodes. I would mention that the meds helped whatever you had going on, though mentioning that may tip the scale toward anxiety. Some doctors just don't understand the concept of off-label. (Ativan (usually for anxiety) is also used for nausea) A lot of drugs usually prescribed for "mental" disorders help us because they calm down the nervous system. I'm just the opposite, I take a stimulant to trick my body into not producing the adrenaline. And one thing to note, most doctors don't read the reports anyway. Good luck to you. Sara

I completely agree with the comments about reducing the list. I knew about all the symptoms I had, but decided simply to focus on the few that were most annoying. (Part of my problem is that I've been having these symptoms for years - since I was very young- and I didn't know that that blacking out when standing up WASN'T normal) I still remember telling a neurologist that I always blacked out when I stood up and got wicked dizzy. He just looked at me and asked how long it had been going on, and I said since I was 8 or so (I was 19 when this happened). I would be laying on the couch in the living room and if I got hungry and wanted a snack I would have to get up and walk into the kitchen. I had to stand in front of the snack cupboard for about 10 seconds to get my vision back so I could pick out what I wanted to eat. That visit was the first step in getting diagnosed. And since it was a weird symptom I ALWAYS brought it up at the Doctor's office. I also focused on my "panic attacks", though I never called them panic attacks or anxiety (Now I do because my Doctors understand it is physiologic not psychological). I explained specifically that I could be perfectly calm, and my heart would suddenly start racing, hands get cold and sweaty and then the nausea and other gastro symptoms hit. Once the gasto symptoms resolved so did everything else. That, I think, was the clue. I could trigger the gasto stuff with eating certain foods. Also, I would just want to curl up and sleep when the attacks were happening, which is also not typical. That is what made the doctors sit up and listen. Anything that is NOT typical of another condition is something that needs to be brought up. Sort of like "I have this collection of symptoms that seem odd and are interfering with my life. Here's what they are." And when asked if it's just anxiety or something you can say "This is different than what I typically have and has a completely different set of triggers." I was diagnosed with generalized anxiety disorder a long time ago. I know I'm a perfectionist. I know I get wicked stressed about stuff in general (probably due to too much adrenaline, but who knows. ) My "panic attacks" aren't anxiety triggered. The problem is getting a doctor to believe it. As weird/bad as it is, I leave that part blank on medical intake forms. That way I can't be accused of lying to the doctor, I just omitted info. If he asks about it, I tell him. Most don't. Good luck at your appt. Sara

Completely agree! Stress makes everything worse. Spent the weekend moving out of a very bad apartment (sublettor was nuts) and I'm still feeling it. I wish we recovered from stress like everyone else did. Sara

If I'm doing stuff during the day (ie working) I need at least 10 or 11. If I'm not doing stuff (ie summer or if I'm out of work due to an injury) I need 9. (This is after 2 weeks of 10+ hours). I think we're all in a state of sleep dep, just because our bodies need so much energy just to remain upright. Sara

Definitely had an issue with paint when I moved out of my apartment, but then again so did my boyfriend as we were using spray paint indoors!!! (note to self: don't so that again) Maybe having someone else do the painting might help, and airing out the place for a while with lots of fans might be useful. I think cleaning supplies are worse than paint (as Rachel and masumeh said). There is a chemical called Odor-Be-Gone (http://www.odorbgoneproducts.com/) which is wonderful. You add it to the paint and the paint doesn't smell at all. My parents and I used it when we painted our family room and their bedroom. There was virtually no paint smell. My parents could even sleep in their bedroom the night after we painted. Sara

I too don't have much advice as to what might be causing this. Wondering if she has been diagnosed with Elhers-Danlos or another collagen disorder. Perhaps this could make her skin weak and more able to tear, and the microtears from the skin fragility could invite in bacteria. Just a thought. Sending prayers and well wishes to both your daughter and your family. Sara

I agree with HoudiniCat. Carinara - Our bodies don't like stress. I've been having a feud with my roommate over his buying of a dog. Something fell in his room when no one was home and he called the police saying I did it (because I didn't want the dog there as it causes severe allergic reactions??? (and I with all my joint problems was able to pull a shelf full of DVDs off a wall???)). He then went into my room and tossed everything in my trashcan all over the room and threw all my fruitsnacks (so bad for me, yet so good) all over as well. The guy's a nutjob, but I'm the one having horrible POTS crashes (chest pain, seizures, rapid heartrate, trouble breathing, etc), especially when the police called to find out where I was so they could arrest me! (Thankfully they heard my side of the story, and I have receipts that prove I was 20 mins away when this happened). I'm moving out as soon as possible to eliminate the stress before I wind up in the hospital due to his jerkiness (understatement of the year, can't type what I really want to call him). Get out of the situation if it's making you sick. Took me way too many years of being sick to realize that. Sara BEST WISHES!!!

Definitely hard to date when you have a chronic illness. But I would also say that it's hard to date when you don't have a chronic illness. As for me I recently (about a year ago) got out of a long term relationship with someone I cared deeply about but who didn't reciprocate. He and I went through the diagnosis phase of my illness together and let me tell you I went through absolute panic when he dumped me. I thought that I would never find someone who would love me as sick as I am. Throughout the next few months I dated a few people, most were people I knew in some capacity (friends first - lovers later kind of thing) Those friends knew about my illness and were supportive. I did date one guy who didn't know. He had a fit that I didn't tell him everything on our first date so that he could have made a decision then about whether to date me. I told him stuff slowly, as it came up. I have a benign pituitary tumor and needed to have an MRI as I was getting a bit more photosensitive and having headaches. He told me point blank that he didn't want anymore "surprises" and that I was holding information back from him. I told him to "get out of my life". There are jerks out there, and sick or not, we've all met them. (I seem to attract them...) The current guy I'm dating I've known for over six years. He knew about my illnesses and misdiagnoses and thankfully gets my medical condition. (It may be because he has some strange medical issues of his own). When I got really sick in January he was there at the hospital with me (and we had only been dating 2 months). It was then I realized he was a keeper. (LTR boy never visited me in the hospital) I guess what I'm trying to say is 1) Dating stinks, whether you are sick or not and 2) there are jerks out there, but there are sweeties too. Good luck! Remember there are always fish in the sea and don't forget to toss them back if they start to stink. Don't let the fear of dating paralyze you into staying with either the first guy who comes along or a creep. Sara

pat57- I'm not sure what's going on with me. My memory is definitely shortened during this period and the twitches are violent (twitched my boyfriend off the couch the other night). I saw a neurologist about this and he refused to put me on any medication for it because it was atypical and hadn't been caught on an EEG (had a 24 hour monitor and that was normal). I don't want to go back to a neurologist because in my state if you've had a seizure you can't drive for 6 months and you are required to be medicated for the rest of your life. Maybe I should pay attention to it a little more. They tended to happen lying down, so I assumed it wasn't the POTS, but it may be that I sense them coming and therefore lie down. Not sure. What do you think? Anyone? Bueller? Sara

I get what I've termed to be seizures. They're not seizures as I know what is happening when I have them, but I can't move and my body just shakes. If I try to prevent these seizures, they usually get worse, so usually it's better for me to just have them and then, after about 10 mins I'm good. They tend to happen when I'm stressed and I think it's a neurological reaction to too much adrenaline. My BP also bottoms out during them (EMTs couldn't get a reading). I'm not sure if that's what you're experiencing but I hope you get better soon or at least the Doctors have some answers. Sara

Congrats on a good ER doctor. They are so rare! As for the cysts, what type are they? I have fatty cysts around my spinal cord. (And no one has ANY idea why) Sara

I call them adrenaline surges. I get them sometimes. Very nauseous, freezing cold (teeth chattering) especially on my hands and feet. White as a ghost, heart rate 160+, BP high (took it only once, 160/110). Severe stomach pains and (TMI) diarrhea. About 2 hours later, I'm good. No idea what's causing it, other than the adrenaline surge, so that's what I call it. It's triggered by changes in Temp or Exercise or (sometimes) nothing. Best of luck to you. These are the pits. Sara

I too have an MVP and POTS and EDS! (Yippee!!) My MVP is dependent on position. When I stand up or am propped up on a table, the murmur is there, yet when laying down (as I was when the echo was done) low and behold, no MVP. I read some study (can't remember now where) where POTS and MVP were linked. MVP was called Soldier's Heart and caused symptoms very similar to POTS. In the article MVP and POTS were linked. The relation to hyper-mobility and MVP is that the collagen (stretchy stuff in skin and tendons that holds stuff together) is abnormal.This is abnormal not just in tendons but in veins (hence the blood pooling) and the heart (hence the MVP). We don't have enough tension in our "stretchy stuff" to make the valve close tightly. (Apologies for the oversimplified explanation- I'm having trouble speeling ) Sara

Congrats! Best wishes for an easy pregnancy! Sara

Thanks to everyone who sent the warm wishes. It really helped. I went to see disability services at school today and was told that as long as it is okay with my PI (principle investigator - ie boss) I can work a different set of hours than everyone else. I was also told that if he has a problem with these reduced hours, he is to talk to disability services and they will set him straight. As it stands I will work 4 hours total, but in two hour blocks, one from 10 to 12 and another from 2-4, each day. The people in disability services were SO helpful. I guess my GPA being over 4.0 might have swayed their opinion as to why I should stay on . I also talked to my doctor (aka stopped into her office unannounced - the benefits of working at the hospital) and she took one look at me and ordered IV therapy to try to get my BP back up as well as a blood panel. (She also told her nurse that if I ever call or come in asking for bloodwork, I needed it 2 weeks ago , and I shouldn't be questioned as to why I needed it. Felt really good to have someone in my corner.) That, and I have a (TMI warning) yeast infection. Yippee, just what I needed, but the disability services meeting and meeting with my Doc, kinda countered that "pleasant" news. Thanks again to everyone. Sara

Hey Everyone- I need some advice and a little pick me up. I've attempted to go back to work and find myself more exhausted than ever before. I'm pissed at my body, pissed at life, and feel like my dreams are just floating away. Had a two hour meeting yesterday and wound up SO tachycardic and shaky that I was completely non-functional for the rest of the afternoon. I want to go back to work. I want to be around people and not have to depend on anyone for my needs. I want to be "normal". I can feel myself crashing again, and I don't know what to do. I think I'm going to try to talk to disability services again and see what can be done. Can't take the time off because I have bills to pay. I thought since the last flare this would have gotten better (and I was feeling better at home doing nothing) but now it seems like I've made no progress and I just don't have the energy to go through the rounds of doctors again.Thanks for listening. Sara

Same thing happens to me. Usually I get the reaction like that after a hot, hot bath, or sitting in too cold a room with an A/C blowing down my neck (yes, I react to both hot AND cold). It may be that our bodies don't like the changes in temp. If you drank ice water that might trigger the stomach issues. That triggers a similar reaction in my Mom, who doesn't have POTS. I'm not sure where you are Kitchmill, but yesterday was hellish with the heat and humidity here in CT. It may be the humidity that's more of a problem for us than the heat. Sara

I think it may be related to the surgeries. Was diagnosed with a spinal cord injury after my car accident and actually felt better for a while (maybe because I had to take the time off work to recover). I think our bodies don't like the stress that surgery puts on it. Just my thoughts. Sara

Lenna- The concept of waking up your son at 8AM no matter what seems like the worst idea EVER in my book. I tried that in college (had an 8AM Inorganic Chemistry Class everyday so I was up at 7 no matter what). I was SO sick from that. It made my POTS worse, mucked up my sleep schedule even more (I couldn't fall asleep until 2 or 3 am) and generally created ****. That was the one class I skipped 5 classes of because my body refused to let me go. Let me explain refused: I would sit up to turn off the alarm and faint (not fall back to sleep, faint). I was nauseous all day, couldn't think to take notes in any of my classes, GPA dropped in ALL my classes; I just couldn't function. I've had numerous doctors tell me to just re-adjust my schedule and I have attempted it multiple times. The last time I wound up in the hospital and was unable to walk for almost a month (this was 9:00AM five days a week) because my symptoms were so bad. I guess what I'm trying to say is, doing this re-adjustment might not just ruin the whole day. I personally CAN function if I get one day in the week to sleep in as late as I want to. This schedule allows me to hold down a job. People with POTS, I've found, can't let ourselves get run down. If we do, it's back to square one. We have to listen to our bodies. Your son is still growing, and like all teenagers needs extra sleep. POTS isn't just a mucked up sleep schedule. There is something physiologic going on. Also, just because this doctor has a lot of experience doesn't mean that everything he suggests is a good idea. Best of luck to you and your son. Sara

I was told not to take it. I have POTS not PAF. My endocrinologist read an article about it, but because I have digestive issues, she didn't want to do anything that would further increase my gastic motility. But, I hope that if you do try it, it'll work for you. There's a current study in New York about using it for POTS. Sara