delphicdragon

My mom took it for the flu two years ago and it immediately made her sicker than she was with the flu - vomiting and diarrhea were almost instantaneous and were the last thing she needed with a fever. It also only shortened the illness by a day. Not worth it, in my opinion, and she doesn't have POTS. Sara

I think you just have to be you. You can't keep up a facade forever (believe me, I've tried). I've been with my boyfriend about 7 months and he accepts me for who I am and what my limitations are. Believe me, he's scared as I've had a LOT of medical stuff crop up in the recent weeks and he's starting to understand the medical stuff I go through on a daily basis, but that's a normal reaction when someone cares about you. It takes very special people to understand us, and sadly those people are few and far between. I never pictured us together, but it's working so I won't knock it. The concept of a chronic illness is something few people understand UNLESS they've experienced it. You can't let your pride get in the way (but I know that I do - missed out on going to the Big E because I refused to be pushed in a wheelchair) I say, lay it out on the table. He'll figure it out anyway, and full disclosure works better. I'd rather my significant other KNEW what was going on then guessed about it. Guesses tend to be wrong and scary. I'd talk with this guy and see what he thinks and what he wants out of this. Be blunt. You don't get anywhere by hiding your feelings. We're all entitled to happiness. If nothing else, remember that. Sara

Thanks everyone. I started the B12, and even though I've only taken it for a few days, my mom and boyfriend have noticed substantial differences in my stamina and my balance. I can stand up with my eyes closed now. I used to fall over almost immediately, now I can stand for over 5 seconds!! I also don't slur my words when I'm tired anymore and seem to be a lot calmer. I don't know, I don't really notice much- but I figure if they see the differences, they are probably there. I wish I knew why I was deficient. I eat a varied diet (granted with too much chocolate). I have Vitamin D deficiency too, and am supplementing with 4000IUs a day, which has corrected that. I was tested for H. Pylori and that was negative. I figure my guts aren't emptying correctly because of EDS/Gastroparesis.... I have to eat every 90 mins and can eat a full meal and be hungry 30 mins later. I think stuff just goes through the stomach too fast. I'm also wondering what other vitamins I might be deficient in. I'm just hoping the B12 keeps working, because I like the effects. Masumeh, I've never heard that you should take B with Ca++ to prevent kidney stones. Though, I am pretty sure that too much B can't hurt you because it's water soluble, so if you have good kidney function it should be excreted. I'll look into that. I think it might be worth it to get tested for B12 or just try it (ask Dr first, obviously). It's made a huge difference thus far. Sara

I believe those would be Greek letters. :P

It may be the dose of sugar that got you going, not the Vitamin D. I find sometimes sugar when I haven't had anything recently will set me off. I take Carlson DDrops. http://www.npicenter.com/anm/templates/new...1&zoneid=8; http://www.carlsonlabs.com/ They are basically pure D. I started with one drop (1000IU) and now take 4 daily. I used to have reactions to the other Ds, and I think it was the inactive ingredients. Sara

Papaya Enzyme helps. You can buy it at your local Vitamin Store. Also candied ginger can sometimes stop nausea. Sara

Prayers sent here! Regarding Autonomic Seizures - I have them. I do lose consciousness, but sometimes I can hear even though my body is shaking and won't respond. I was told I didn't need anti-seizure medication because it's not a true seizure, where the brain is misfiring. There is an underlying cause (no blood pressure hence cerebral hypoxia) and the only thing that can be done is to try to fix the underlying cause. I know when they are coming and lie down with my feet up and eat something high sugar (usually straight sugar) to prevent them. Reducing stress seems to prevent them too, as does eating at regular intervals. Sara

1st period at 15. Immediately regular periods ranging from 25-28 days. For a bout 3 years periods were very painful and caused diarrhea- that's gone now. Occasional irregular bleeding following stressful events (18 day period or skipped period) On NuvaRing currently which ups my energy, 3 months on, 1 week off. Basically it's been going on for 10 years every 28 days.

Thanks for you input everyone. I called the Doctor back - got the nurse - and was told 1) You didn't really need to call us back, all your blood work was normal ; to wit I asked about the B12 Deficiency. 2) She said, oh yeah, take IRON; which when I inquired how that would help, she said the doctor would call me back. ACK! How I hate people who have NO idea what they are talking about. I called my endo too and informed her of the news - so maybe I'll get somewhere with her. I just looked through my records and NO ONE had done this test before. I'm shocked - figure that would be one of the first things one looks for when a patient presents with fatigue. Ramakentesh, I was diagnosed with POTS almost 4 years ago and noticed lately that the weird neuro symptoms were getting worse and I was very fatigued. Hence, the B12 test. Yes, I know most of my symptoms are from POTS, but my POTS is secondary to EDS, both of which I've therefore had all my life - these symptoms are relatively new. Hence, the reason why I'm inclined to believe it's the B12. I'm just shocked that a) my doctor's nurse thinks IRON will fix B12 and that in all the blood I've had drawn over the years, no one tested for B12. Sara

Got back blood results from a physical. My D is finally up! Yay, it's at 36 (up from 19). However my B12 was low. I've never been tested for this before and reading online tells me low B12 can cause rapid heart rate and paranoia as well as coordination issues. Well guess what? I've got those symptoms as well as some of others. Has anyone here been diagnosed with B12 deficiency? If so, how do you fix it? I tried to take B vitamins about a year ago and got horrible headaches. Sara

My favorite "placebo" is Rescue Remedy. http://www.rescueremedy.com/ I don't know if it does anything, but for me, taking it immediately stops the panic attack. Too much will put me to sleep though. Sara

I was definitely using coping mechanisms for my dyautonomia before I knew that I had it. For instance, I always sat with my feet up - got yelled at numerous times for doing this at the dinner table- but I instinctively knew that feet up (usually on the crossbars of the table) meant less blood pooling). Also always sat cross-legged on a chair. If I had to wait in line, I would instinctively squat down to look at stuff on the bottom shelf or to "tie" a shoe. Never knew why (until my diagnosis) but I just did it. I was coping without even realizing it. Also, always ate small meals every 90 mins. I apparently I've done this ever since I was born. I still can not swallow pills unless they are teensy and can't mimic a darn thing. Strange eh? Sara

Well, I have the results in hand, but have yet to hear from the doctor - even though the results themselves say "Clinical Correlation is recommended." I'll copy it here: IMPRESSION: 1. Area of asymmetric enhancement noted within the region of the pars intermedia with slight deviation of the infundibular stalk to the left. Although this finding is non-specific, differential considerations may include a pars intermedia cyst versus a small microademona. Clinical Correlation is recommended. 2. Otherwise, normal appearing MRI of the brain without evidence of focal mass, midline shift or acute intracranial hemorrhage. No abnormal enhancement is noted. So I guess I do have a brain (always a good thing) and a tumor/cyst of some sort. NOW HOW DO I GET MY DOCTOR TO CALL ME???? Sara

I had food poisoning a while back (on vacation :-() and I had diarrhea for about 3-4 days before it finally passed. Probably had the low grade fever too, I felt all warm, but didn't have a thermometer. Best thing to let it do is pass on through - taking stuff to stop the diarrhea is probably going to make it last longer. As long as you can keep hydrated, you're probably okay. If it goes on longer than 5 days, I'd see a doctor, you might need antibiotics. I don't think it's H1N1, as you didn't say you had any respiratory symptoms and that's what usually signifies the flu. Feel better soon, both of you! Sara

Cortisone shots do tend to make me more POTSy afterward, but as Firewatcher said, it may be due to the pain. I make sure I take it easy after the shot (I get them in my hip) for the rest of the day, and usually by morning the pain from both the shot and the bursitis is gone. :-) What do you need them for? Sara

Take Benadryl. That should help the reaction. Sara

I had an MRI of my pituitary yesterday and got a copy of the results for my records. I had one in 2005 and one in 2006 - both showed a slightly enlarged pituitary, but no tumor. Comparing the last MRI to the current one, there is a hypointense area on the pituitary gland that wasn't there last time. :-( I'm so scared. This is consistent with a microadenoma of the pituitary. (Yes, I'm not a radiologist, nor do I play one on TV - but I've gotten quite good at reading these things and this is a distinct change from last time) I don't expect the doctor to get the results until Monday or Tuesday, but I'm running myself ragged right now. Granted, it would explain a lot of things, including why my POTS is getting worse as of late and I'm getting a lot of chest pain / nausea too. I just don't know what to do right now- other than wait - and it's something I'm very bad at doing. Any ideas as to what I can do to calm down until this is official? Has anyone ever had a hypointense area on their pituitary that wasn't a tumor? Sara :-(

UPDATE: I saw the electrophysiologist today. Good news and bad, I guess. He wanted me to try compression hose, which my Mom has graciously agreed to pay for. (They are EXPENSIVE!!) He wasn't so sure about the POTS diagnosis, but did a poor man's tilt table test and I failed it miserably. My numbers... Laying Down - 124/80 pulse 80 Sitting Up - 120/84 pulse 84 Standing - 116/ Palp pulse 120 (Apparently he couldn't feel a diastolic) So, yeah, I still have florid POTS. Standing up my hands actually turned dark purple/blue, so he's thinking the compression (thigh high) along with fluids will do the most good. He's also told me that even though I have asthma, it's not as severe as I thought it was, so he's willing to try a selective BB on me- but before we do anything, I'm getting the compression hose and a stress test. (Yippee) Stress test is Monday. I'm starting to worry things might be very wrong because everything is being scheduled SO quickly. He's a good cardiologist, who I like a whole lot. Thought the EDS/POTS/Allergy to Artificial Butter Flavoring was funny, which I completely agree with. I'm just a zebra! Sara Nice to have a good Doctor experience for once. :-D

I'm seeing an Electrophysiologist tomorrow. Anyone have any idea what a first appointment with one of these guys is like? This one was recommended to me by my Endocrinologist. I know I need a stress test because of chest pain when I exercise. Other than that, what should I expect? Thanks everybody! Sara

I think what helped me the most was being very stubborn. Also, I wasn't willing to accept a psych diagnosis. Any doctor who told me this was all in my head got the boot. I had a doctor tell me after HE diagnosed with asthma, that it must be psychosomatic because I couldn't handle albuterol due to the tachycardia it caused. To him, my inability to take that medication meant that the methacholine challenge test I had taken and failed spectacularly didn't matter. I refused to believe it was ALL in my head. Being a "member" of the medical profession helps too. I'm a biochemist and can speak "doctor." That helps a lot because most doctors felt that I wouldn't decide I had a rare disorder unless there was scientific proof behind it. The biggest problems came when I was younger because it was easy to push off a thin, anxiety prone girl as having psych problems. I did see my share of psychologists - all who got no where with me. A lot of my life was spent living with the symptoms and the symptoms have stolen from me a lot of things, but I keep going. What other choice do I have? Sara

Let's see... Have been flexible, nauseous, having blackouts upon standing, tachycardic, exhausted etc my whole life. Figured that was normal - wondered how everyone else did it feeling like crud. Saw multiple specialists and got diagnosed with Inappropriate Sinus Tachycardia, Migraines, IBS, Anxiety Disorder etc. Gave up on doctors. Started having autonomic seizures in college. Was taken to the ER with zero blood pressure, held for a while and released into a neurologist's care. Neuro had no idea what was wrong but did a poor man's tilt and told me I didn't have epilepsy, so he couldn't help me, and that my blackouts were related to standing. Ignored things for a while. Was diagnosed with Ehlers Danlos by a geneticist after a very evil rheumatologist dislocated both knees, both ankles, a shoulder, both wrists and various knuckles "proving" I wasn't hypermobile. (I must admit that I did self-diagnose the EDS- but I never told my geneticist that I suspected anything.) Went to see my PCP for a physical and complained about the blackouts. He sent me for a pituitary MRI on a whim. Found an enlarged gland and got sent to an endocrinologist. He found no tumor, but low aldosterone. Supplemented me for that with (drum roll) Florinef. I did a google search for hypoaldosteronism and got nowhere. In the meantime, I started having chest pain and went to a cardiologist. I explained my symptoms and he did a real Tilt Table Test. It was positive. Told me I had POTS, it was due to being deconditioned and I needed beta blockers and exercise. Can't do betas - was "removed from the cardiologists care". That's my story. Got a diagnosis, but no treatment. Am currently being treated by an endocrinologist who specializes in low blood pressure. About to see an electrophysiologist for my heart-related issues. Sara

I've been in a school setting for a long time. I struggled through a Bachelors undiagnosed, and did my Masters (mostly) online. Now I'm onto my PhD. The PhD requires me to be in the lab for long periods of time, but my boss knows about my problems and is helping me deal with them. I think the best recommendation I can make is full disclosure. It's the hardest thing you'll have to do, because you probably don't want to or (at least in my case) admit I was that sick. I came clean to my boss when I started working in his lab. Before that, I had spoken with the disability rep on campus. Exceptions can ALWAYS be made to rigid rules. I miss one day of work a week to get a 4-5 hour saline IV. My boss is okay with this because he knows about it. He was concerned at first because I didn't want to tell him and kept telling me to work harder and not miss so much lab time - now that he knows he is very understanding and doesn't push me to be in the lab when I can't be. I make it a point to keep my feet up and don't stand for too long. For presentations I walk back and forth, which, though mildly distracting, keeps me upright. For me, pushing myself makes the disease worse, so I have to be careful not to live beyond my limits (I can occasionally push them this way, instead of being dead at the end of the work day.) I'm supposed to work 60-80 hours a week. I try to get in 30. And because people KNEW about my disability, it's okay. As for H1N1 and colds/ flus - I'm not sure what to do about that. I miss work when I'm sick - I have to. If I try to push through it I guarantee pneumonia. Easier to take 2-3 days then 2 weeks. If someone at work is sick, I avoid them. I wash my hands / wear my gloves (it is a lab after all) and will not hesitate to tell someone to "go home" or "sit over there" because they are sick. I grant everyone the same courtesy, isolating myself when I think I might be contagious. Good luck with your classes. Sara

1 day early. 9 pounds. Did have jaundice though.

Hey Everyone- I've been getting regular saline IVs now for the past 3 months or so. Today, due to me looking like crap (and feeling par for the course) they did a blood draw. Couple things that aren't making sense and are worrying me. 1)Even though I push myself to eat CONSTANTLY my glucose level was 62! This is maybe 10 minutes after eating. My last blood draw (6/13/09) also had a low glucose (72), but I was hungry, so I brushed it off. 2) My potassium is dropping out. It was 4.5 in June, now it's 3.6 (just high enough to be "normal"). I have a feeling these two things are why I'm feeling like crap, but I don't know what to do about them. The nurse doesn't know what to do with the blood sugar and told me to call the dr. Well I won't get an appt for a month, and I'd like some input sooner than that. Thoughts would be helpful. I do have a large pituitary, so I'm wondering if that might be it or if this is just normal for a POTS/EDS patient. Thanks everybody! Sara

Count me in to the "doesn't ever get numb" category! I needed the maximal dose of two different numbing agents to get my wisdom teeth out. And 5 epidurals for my knee surgery. Oh the joys of EDS! Sara