delphicdragon

Hey Melissa- I'm in grad school too, and yes, I have had to take medical leave as well. I was undiagnosed in college, though I was actually worse then than I am now. It finally took me having a seizure-like thing, and the EMTs being unable to get a blood pressure that got me to a doctor - who apparently diagnosed me with POTS, but since he couldn't name it, I got no help. It's so hard to have to take medical leave! But I needed it. My heart rate was resting at 115 after 3 liters of fluid - down from 160. There was no way I could have gone to work like that- just too exhausting. I agree with MightyMouse. Go to the disability services place on campus and talk to them. They have been so helpful for me and I can't thank them enough!! I owe my ability to work to the people in that office. They had no questions about the Ehlers-Danlos or the POTS, just said, what do you need. They are awesome! HUGS! Sara

So sorry. Hope that it isn't something serious! Sara

Well, I technically have reactive hypoglycemia. But this wasn't typical of that. Usually I get very crabby when I need sugar - it's always been a personality change, never a physical change. That's why this is so weird. (My blood sugar has gotten down to 12 ( though I think that was not correct) without physical changes) And yes, eating helped, but drinking water helped more than eating. Maybe my body just wanted to stay asleep. Sara

I'm wondering if anyone else gets something like this, or something similar. I have what I call "panic attacks", which usually consist of nausea, tachycardia, very cold and clammy hands and feet and diarrhea. This morning something very strange happened. I woke up with a slight headache in the back of my head and I was slightly nauseous. I decided to rest in bed for a bit to see what was going to happen, if anything- expecting this to progress into a "panic attack". Instead I started shivering uncontrollably with my teeth chattering. The nausea never got worse, nor did the headache, but it stayed with me for the next 30-45 minutes. I was NOT tachycardic. Then I realized I needed to get to work, got up and got really nauseous- but the shivering stopped. The nausea was gone once I ate something. Did my blood sugar drop out? Was this a migraine? Any other ideas? Help! Sara

Hey Everyone- Had this happen to me last night and am shocked, shocked that this kind of thing occurs. I went to visit a friend at his dorm and wound up staying the night because I was too tired to drive home. That's all well and good. I parked my car in a handicapped spot on campus, and there are no handicapped spots for visitors. I got an $85 dollar ticket this morning for parking in a handicapped space. The officer actually wrote down that I had a handicapped decal and parked in a handicapped space, AND GAVE ME A TICKET!!!!!!! I am absolutely livid. My friend called campus safety (who gave out the ticket) and was told that because I had been seen walking around campus, I obviously didn't NEED the sticker and therefore got a ticket - also that I should have parked in the visitors lot, which is a good 1/2 mile walk from his dorm. A) They have NO right to say that and Do you really expect me to walk a half mile? Especially when there are no handicapped spaces in that lot? The officer also said that I should "just be able to" walk it, or that my friend should drop me off, go park my car, then walk back. THIS IS CRAZY!! Thanks for letting me vent. I AM NOT PAYING THIS TICKET!! Sara

1. Sara 2. 24 3. POTS, EDS- Hypermobility Type 4. 22 5. Connecticut 6. Tachycardia, nausea, abdominal pain, chest pain, diarrhea, fatigue, low/high BP, panic attacks, seizure like episodes 7. Tachycardia, nausea 8. Florinef, Propranalol (due to asthma) 9. Sudafed, Salt

I definitely get more "sick" from the POTS if I am stressed out. Had a recent traumatic event and was literally prostrate because my nausea and heartrate both decided to act up. I've always though that my POTS at least is from an underlying hormonal/glandular problem. My aldosterone and cortisol both fall on the lowest possible normal value (Aldosterone =3, normal 3-28, Cortisol = 7, normal 7-22(i think)) I have an enlarged pituitary that is 1 mm away from needing surgery. But until my values fall "below" normal, I'm fine, right? Right? I tend to take longer to heal from illnesses and such. Have a URI right now and am pretty sure at this point it will become bronchitis. It always does. And I have ALWAYS needed antibiotics to get over a cold as I always got a secondary infection. I wonder if this is related to low adrenal function. Personally, I think I have a double whammy going on. I have Ehlers-Danlos. This makes my veins extra stretchy on top of the hormonal stuff. Figure my body could cope with just one, but not both. Sara

Good luck for a speedy recovery! Hope the pacer helps! Sara

Mine was 3 too. The endo I was going to felt this was too low and gave me florinef for it. Helped SO much, but caused a ton of swelling, so now I just have it for emergencies when my BP is really low. My lab had values for aldosterone between 3 and 28 as normal. So technically I was normal. However, the endo I spoke with said since I was having symptoms of low aldosterone, he was going to give me florinef. He said he wouldn't have given me the meds if my aldosterone was in the 7-9 range. Sara

Been trying to find a BCP that works for me. So, let me try to answer your questions... 1) Not sure about BCPs messing up the hormone function in the long run. My cousin was on BCPs for 13+ years and got pregnant about a year after discontinuing them. She doesn't have POTS. I'm sure it's possible that these will "mess you up" for a while after you stop, but usually things go back to normal. 2) Yaz is a diuretic. Other BCPs are not. Yaz is targeted toward the PMS symptoms that people get, and since bloating is one of those, it is supposed to help with PMS. 3) Not sure about this question either as I don't take midodrine, but that is something to talk to your doc about. She should know about drug interactions. (This is of course said if you don't have an underlying clotting disorder) 4) I've tried a lot of different pills. I'm wicked sensitive to medications, so I've had unsatisfactory reactions to almost all of them. Seasonque was too high dose for me and caused a ton of side-effects (mostly gastro). OrthoTriCyclen Lo was great, except I had a period for almost 2 weeks and got horrible acne (which never went away!) Just tried NuvaRing. Pulled it after a week due to a horrible Upper Respiratory Infection that could have been attributed to the ring. Still am bleeding from that one too. I'm going to try it again next month, as I want to make sure this wasn't a co-incidence, and the ring cleared up my acne for the first time since I took the Ortho, almost 5 years ago. If one type of pill doesn't work, try another, and hopefully you will find one that you can take without horrible side-effects. I am also wicked medicine sensitive, so this may have something to do with my intolerance to these as well. Sara

Feeling really devastated right now. The guy who was so sweet to me, who I really and truly thought was my soul mate, decided that we should break up. He gave me no reason for it, tells me he still loves me and still wants to be friends (HOW?) I know he's completely overwhelmed with school, but it seems like this just came up out of the blue. He was younger than me by 4 years and maybe that had something to do with it. He says he just isn't ready to settle down and that he's too young decide that I'm the one for him, even though we're happy together. I don't want to lose him, but I guess it's just too late for that now. I'm going to go cry for a while. Not looking forward to finding a relationship especially considering my POTS and I don't want to wind up an old maid. Those of you who are married, where did you meet the husband- bars are so NOT my thing and most of my male friends are either far away or gay. Sara

Seems one or more of my joints is always in pain. Let's see today it's the left wrist and ring finger, lower back, right hip and left big toe. I know this is Ehlers-Danlos (EDS) for me, and it's something you should look into, especially if you are hyperflexible. Need to stretch my back to put that vertebra back in and do some adjusting to the toe. Should be ok for a while and then I'll move and something else will go out. Such is my life. Unfortunately, I've found, and with talking to other EDS patients that there really aren't any painkillers that cut this pain. It's there for a reason. The joint IS dislocated. I've found there is little or no swelling associated with this pain, other than the obvious, "well that doesn't look right." I don't swell up at ALL. Have had numerous broken bones all with NO swelling, but my ankles swell when I stand up - go figure. Sara

Okay- So I'm both pissed and scared right now. I got the results of the ultrasound and it says two things. I'm copying them word for word here. 1. Mildly complex cystic finding right ovary which is new since 2007 study. Favor benign etiology but recommend short interval follow-up ultrasound. (This is what she was calling me about. Apparently I have this cystic thing that is debris filled and they think is benign but "malignancy is not excluded at this time" Great- just freaking great! I've had these cysts before, but all have resolved before the ultrasound could be scheduled. This scares me, but maybe it is just the doctor covering his butt. I'm 24. Aren't I too young for this?) 2. Small uterine mass consistent with fibroid. (She NEVER told me about the fibroid. I think that is something I should know about!) No follow-up was scheduled. I'm currently attempting to make an appt with another gyno. ASAP. Maybe that'll help me stop panicking. Sara Oh, and to add insult to injury, I also saw my orthopedist this morning and he thinks that my shoulder, which I've been nursing for about 6 weeks now will require surgery because it's now grating. :-( That's gonna be fun with EDS!!

So I finally got through. She says that it looks like I had an ovarian cyst that my body isn't dissolving properly- hence the bleeding and pain. Now I don't know what this means, but I am now told - NO BCPs, and wait for a couple months and see. Growl. I am thinking I'm going to get a copy of the results of the ultrasound and get a second opinion. Sara

I had an ultrasound due to pelvic pain after being "diagnosed" with low progesterone on Friday, about a week ago. Had a **** of a time drinking 32 oz of water at 6:30am, and apparently my body absorbed most of it, because they could only do half the exam (just transvaginal, not pelvic). Well, I got a call from the doctor today (on both my cell phone and the house phone) telling me that I needed to call her back. According to the message, it's not an emergency but she needs to talk to me as soon as possible. (***?) So I called her back and was told she would call me back within the hour. She didn't, so I called back again. This time I was assured she would call me back by 5:00. At 4:45, I called the office AGAIN only to be connected with her receptionist and to be told that she had left for the day. The receptionist is a real "peach" and, I think, feels that I am just over-exaggerating my symptoms. Whatever. So she said that my gyno was just returning my call from earlier that day. I said, "what call, I didn't call her, she called me." The receptionist pauses and says, "let me look at the list." Her voice then gets really low and she says, "Oh. You need to call tomorrow between 9 and 12 and you will be patched through directly to the gyno." Well, I'm panicking now. It is NOT helping the POTS at all. I'm used to NEVER getting the results of tests back. My doctors seem to operate with the policy that if it's "normal" or pretty close they don't call. I've only received a call from a doctor once before and that was to tell me I had a pituitary tumor! This doctor is notorious for sending notes that say Your PAP was normal, etc. Anyone ever had a doctor call with good news? Sara

I'm fairly certain there isn't one. For the insurance my doctor lists tachycardia and palpitations. (Can't remember the codes) Sara

Willows- I'm so sorry that your son (and your family) has to put up with this crap. Not every disability is visible. I personally was just awarded a blue handicap badge (in the US- but the same thing) and it's AMAZING what people will say because they think you don't deserve it. It's even worse when you're young (I'm 24) because they assume you are using some "old person's" badge. Believe me, if I didn't have to have this, I would be so grateful. I wish those people could spend a day in my shoes and see what it's like to live with POTS and EDS before they judge me. The whole "worse off" thing is bull. I've been told that too - like "will those extra 100 feet kill you." My usual response is something along the lines of - you walk 100 feet with a dislocated hip and tell me what you think. His doctor felt his condition was severe enough to warrant that badge - he should use it - no question. That dean should be taken to task! It is completely and totally irresponsible of him to say those things. Does he have a superior that you or your husband could talk to - like the dean of the school? At the very least some statement needs to be made to this dean. Perhaps your husband or yourself (if you're up to it) could speak with this dean in person about his hurtful comments. Yes, I realize this is college, but if I had a problem at college my parents HAD to get involved or nothing got done. It's amazing what happens when the people who pay the bills speak up. Good luck to your son. (And try to breathe.) Sara

I have MedicAlert. My card says Asthma, Hypermobility Syndrome, Ehlers - Danlos Syndrome, Orthostatic Hypotension, Corneal Abrasions. Should have a bracelet, but I have to take my jewelry off at work so it's not feasible. I included the hypermobility because many people have NO idea what Ehlers-Danlos is, and hopefully can figure out what hypermobility means. I also don't have orthostatic hypotension (as far as I can tell, just POTS) but as of last year there was no listing for POTS. I also felt that I didn't want people to think I was a cannabis user (the most common question I've gotten explaining this condition). So that's what mine says. Sara

I AM LIVID RIGHT NOW! So, I called my Gyno for the results of the tests she did (yeasts, etc) and decided to ask the question about what my progesterone levels were in 2006 as she told me they were low during the appt. SHE NEVER DID A PROGESTERONE LEVEL ON ME! She blatantly lied to me about what the levels were a year ago - AS NO TEST HAD BEEN DONE. She told me they were normal a year ago. Now I know why she didn't want me to have a copy of the records. BECAUSE THERE WEREN'T ANY! Seriously ***? I'm going to find another doctor. This is freakin' ludicrous! Anyone know of a good gyno around Hartford, CT? Specifically one that knows how to deal with people who have a whole host of medical problems and who HATE being LIED to? Sara

I completely understand what you mean. There are times that I wonder what my life would be like if I wasn't sick. I think about how much more I would have accomplished and where I would be right now. I had to give up a lot of my hobbies because of this disease. I used to do sports, act, write, I write fiction, when I can, and I like to think I would be published by now if I didn't need 10+ hours of sleep each night and didn't need the time to recover from my thrice weekly (or more) flares. I also wonder about where my fledgling "career" would be if I could spend the 80 hours a week in the lab that is suggested. The thing is - I just CAN NOT do that. I look back at it and realize that without this disease, I wouldn't have learned to manage my time as efficiently or learned how to ask for help and not feel guilty about it. It's all a compromise. But, life in general is a compromise and it's about priorities. My health HAS to be my number one priority. I also have to learn to live each and every day for what it is. If I can go to work today - great. If I can stay all day - even better! Most people I've found respect me for what I'm doing even though I'm sick. (This may be different with you- I work in the research portion of the medical field- and am sometimes viewed as a very interesting project, as most know something about my disease.) Sara

I AM LIVID RIGHT NOW! So, I called my Gyno for the results of the tests she did (yeasts, etc) and decided to ask the question about what my progesterone levels were in 2006. SHE NEVER DID A PROGESTERONE LEVEL ON ME! She blatantly lied to me about what the levels were a year ago - AS NO TEST HAD BEEN DONE. Now I know why she didn't want me to have a copy of the records. BECAUSE THERE WEREN'T ANY! Seriously ***? I'm going to find another doctor. This is freakin' ludicrous! Anyone know of a good gyno around Hartford, CT? Specifically one that knows how to deal with people who have a whole host of medical problems and who HATE being LIED to? Sara

Just wanted you to be aware that I've had strep throat numerous times (and given it to the boyfriend) and it has ALWAYS tested negative. (As did his). The strep test in the doctor's office only tests for Group A strep. There are other kinds. Mine/ ours was considered to be atypical strep (Like me!). But it was strep none the less. Doctors are supposed to culture the throat if the rapid test is negative, but some bacterial strains are notoriously hard to grow and most docs trust the rapid test. This "idiocity" mean my roomie in college had strep that went to the point of classic scarlet fever before it was diagnosed - by me. She only got antibiotics after bringing printed pics of scarlet fever to the campus doctor. And he was shocked! Shocked! that she had a disease that had all but disappeared since the advent of antibiotics. Have you tried a course of strongish antibiotics - like Azythromycin? That tends to- at least in me- knock out any nasty buggers (knock on wood). Warning - it will destroy your stomach too, so take with lots of yogurt. Also, and this is me going to my hardcore bio, sometimes strep bacteria (and others) form what is called a biofilm, which is basically a membrane that antibiotics can't get through. This leads to recurrent infections especially when the patient is under stress and the immune system dips. A family doc might not know about biofilms and they are notoriously hard to treat, but they are a common cause of recurrent sinus, ear, and throat infections. Sara

So sorry that your parents aren't understanding about this whole thing. I hope and pray that they come around soon or if not, at least accept you for who you are and still love you and understand you despite your "psychological" problems. Sara

I take Echinacea Zinc Lozenges (from Halls) for when I get a cold for two reasons. 1) It seems to help, or at least I think so and 2) Menthol gives me such a stomach ache. I've not had problems with the herb, but I wanted to share that if you are Echinacea regularly, you need to take a break every 6-8 weeks. Also, if you are allergic to a lot of outdoorsy type things it might be a good idea to NOT take it. Never heard of low Vitamin D causing super-sensitive allergic reactions. I have low Vitamin D (need to be restested to see if the supplements are helping) and only have super-sensitive reactions to mosquitoes (and that artificial butter coloring that has now been banned). Should look into that. Sara

I was apparently tested about a year ago and she won't give me the numbers and refuses to test me again! She also didn't tell me I had low progesterone until now- a year later. Gah! According to her, unless I'm trying to conceive (which I'm not) it doesn't matter because my cycles are regular. Just go on the BCP! I don't want to go on the pill to regulate my hormones unless I need to. I think it's time I find a new gyno and have the tests run again. Sara