delphicdragon

I went to Gyno last week to complain about my periods. I also spot beforehand, for about a week, before I get my period. She of course, wants me on birth control pills, and is *shocked* that I can't tolerate many of them. She felt that I have low progesterone. Now, I've been researching that condition and wondering if the low progesterone is causing a lot of my symptoms. According the the internet (of course the most reliable source of information out there j/k) and many of the symptoms of POTS are also symptoms of low progesterone. These included anxiety and palpitations, foggy thinking, etc. Anyone else diagnosed with low progesterone? If so, what did you do? I'm leary to go on BCPs as most make me really sick, though they do tend to make me feel better regarding the POTS; though the gastro side-effects make staying on them impossible. Has anyone tried natural progesterone supplementation or just progesterone pills during the second half of the cycle? Thanks! Sara

This, along with tachycardia, is one of the first symptoms I get when I'm under too much orthostatic stress and need to lay down. It's caused by the brain "stealing" blood from the muscles of the shoulders and neck. The best way to stop this, I've found, is to lie down the minute it starts, if possible. That gets the blood back to the brain and also stops the pain. No pain medicine touches this one for me. Sara

I looked into the Mercola tanning bed too for my low Vitamin D. It's wicked expensive and I'm not sure if you could tolerate it if you have issues with the sun. There is an injectable Vitamin D sold in Canada, perhaps your doctor might be able to get it for you. Mine hasn't been successful, so I'm attempting to spend as much time in the sun as I can and taking a good multi. (Which has helped the bone pain immensely) This may sound weird, but iguana lamps are along the same lines as the tanning bed. I thought about getting one and then shining it on my arms and legs for a little while each day. Perhaps that might be an option too. Sara

What groups are on Facebook? Search for Sara Strecker on Facebook and you can find me. Sara

I found that when I was much more liable, and was pushing myself a lot more than I am now to be "normal" I would get episodes of personality changes. Usually I would get very very irritable until I laid down. It was my body's way of telling me to slow down and get horizontal now! I never noticed euphoria with it, but it's possible. I'm pretty sure I have depression on top of everything else, so I think that may have dampened any euphoria, if there was any. I've never been treated for this - other than been told to get out of the bad relationship I was in. Surprisingly that helped a lot. I think these episodes occur when we are acutely or chronically stressed; sorta like a stop-gap for the brain and a reminder that we need to be taking better care of ourselves. That's just my take on it. Sara PS- Thanks for the info on interictal dysphoric disorder, I need to look into that.

I've blacked out for years. Never passed out - just lost my vision. I always thought this was a normal phenomenon - not being able to see after I stood up. I finally told a neurologist at age 20 about this, and it was one of the factors that lead me to be diagnosed with POTS. The blackouts had been happening since I was 8 - maybe earlier. Good luck to her. Sara

Anyone have an abnormal result with the deep breathing part of the tilt table test? My valsalva test was normal but my deep breathing test was not. No one has ever told me what that means. Also anyone have to have oxygen during the tilt? I was told I had a profound "air hunger" and therefore was put on Oxygen. Didn't matter, heart rate still went up 30 bpm immediately upon standing. I figure that needing Oxygen should negate the results of the tilt as I'm not on oxygen all the time now. Just curious. Sara

Why do you need to have a hysterectomy first? Is he leaving your ovaries? In the US doctors seem to want to do the hysterectomy to "prevent" ovarian cancer or something like that, but there's the whole hormonal thing on top of it. Even after menopause the ovaries still produce hormones. People in the US have the highest rate of hysterectomy in the developed world and it's the second most common surgery performed on women. http://womenshealth.about.com/library/blhyst1.htm Sorry I'm coming across strongly. It's up to you, obviously, but is it possible to do the surgery for the pelvic organ prolapse without the hysterectomy? I say this only because our hormones are pretty mucked up all ready. Leaving your ovaries might help that. (Just a thought) Have your tried pessiaries? There's also a new surgery which is done robotically which new meshes that can be put in which hold better, as the prolapses tend to reoccur. (My grandmother is living with pelvic organ prolapse and won't see a doctor about it - she had a hysterectomy 50 years ago. My great aunt (her sister) had the pessaries and was also told she needed a hysterectomy - went to see another doctor and he did the surgery without the hysterectomy - about 5 years ago) Sara

Sometimes a HOT HOT bath or shower will trigger my bowels to go haywire. I've had bowel issues if I go from being outside and active to drinking a cold drink. (Mom's the same way, so not sure if it's a POTS thing) I think it's a change of temperature thing that shocks the system. Was your house A/C? A/C will sometimes trigger me too; I take a sweater with me everywhere so I never let myself get too cold or too hot. Sara

Wondering if it could be trigeminal neuralgia or another nerve being pinched in the side of your face. Also wondering if it could be a stone in your salivary gland. Had one about a year ago and it was the most awful pain. I just wanted to curl up with a pillow attached to my face. Mine broke up on it's own, but sometimes they require ultrasound to break them up. Just my 2 cents. Hope the pain eases soon, it doesn't sound pleasant. Sara

I hope you find yourself able to go to grad school. It's an awesome experience! I am studying biomedical sciences with a concentration in Skeletal, Crainofacial and Oral Biology. I've been studying uCT technology as compared to Histology, but that will change soon when I start working on a third rotation which I'm thinking is going to be more cell-culture and mouse model based. (Yeah for glowing mice!) My condition was disclosed when I started the program, even before that. I wrote about my condition in my entrance essay (just the Ehlers-Danlos, wasn't aware of the POTS then). I met with disability services before I started the program and have met with the coordinator multiple times to make sure that my needs are being met. Yes, this program is probably going to take me longer than it would someone without this condition, but I am hopeful that I will finish it in the end. I have a friend with Ehlers-Danlos, who didn't disclose her condition and refuses to. It's much harder for her to get the days off she needs and she has collapsed in pain and been sent home often. I would rather my PI (boss) know that I'm sick and therefore help me work within my capabilities, not push me to the breaking point. Good luck to you! Sara

Used to be very sharp, to the point where I didn't have to study for most subjects at school. That changed when the POTS hit. Senior year of college (about 2 years ago) I found I could no longer study. It didn't matter how long I looked at the material or what technique I used, the information would NOT implant itself in my brain. It felt like my ability to learn disappeared. I'm in graduate school now, and I specifically do NOT take classes that call for tests. I can integrate new information just fine into papers and discussions as long as I have my detailed notes in front of me. The stress of the exam triggers the POTS and makes any hope of recall vanish. I used to be able to focus on three or more tasks at once, (e-mail, TV in background, spreadsheet, novel, etc) and I loved the freedom flicking from task to task gave my mind. It's too much of a hassle now and everything blurs together. The only difference is the POTS. I would say though that my main problem is my body as I feel really limited in my abilities just because I don't have the energy to do simple things and my body crashes out quite fast when under any stress. I'm sure if I could get the physical symptoms under control I'd be much more concerned about the brain fog. Sara

Had a strange event yesterday. Went to Home Depot with my boyfriend and walked around A LOT. About 3/4 of the way through our trip I suddenly felt the need to lay down right now! I fought it and continued shopping. That's where my memory stops. According to him I got really really upset and mean and we left the store with me upset with everything. I apparently also had a lot of trouble keeping my eyes open. Got back to my apartment and I laid down and I could immediately feel my brain "start" again and I could open my eyes. He's worried about this event. I'm not, because it used to happen ALL the time, at least 2-3 times a week when I was in college. I'm also leery to go to the doctor about it because I don't want to be diagnosed with some "mental" disorder and run the risk of all the doctors suddenly feeling that my symptoms are psychological, as these events don't fit anything. (I've had EEGs and they are all normal - so it's NOT a seizure) Took my BP and heart rate today as I know I'm not up to "par" yet, and immediately upon standing my pulse went from 77 to 126. Eep! That's the largest jump I've had, about 50 beats. I've been drinking a lot of water thinking it's dehydration, but that hasn't changed anything. Does this warrant a call to the doctor? Or should I just rest and hope it goes away. Sara

I've found that I've lost weight with POTS. Not a lot, but some. I used to be 150 and now I'm about 125-135. This has happened over the course of 6 years. I went off to college and the food was awful, so I would drop about 10 pounds a semester, and put it back on over the break. Lately, if I get sick, I lose weight, and never put it back on. I find I can lose the weight fast, but it takes forever to gain it. I brought this up with my doctor and he said I had a fast metabolism and to eat more. I would if I didn't feel so nauseous all the time! And having a heart rate in the 100s probably also has something to do with it. 70 pounds is a LOT to lose. I read somewhere that sometimes we can have thyroid issues that aren't detected in the regular thyroid tests. I think it involves testing the antibodies to the thyroid hormone. (I so wish I could remember what the test is called!!I think it's TSH uptake...) Also make sure you get checked for rarer endocrine things like pheochromocytoma and pituitary tumors. They can all mess up your hormones and your weight big time. Good luck finding a good endocrinologist. Sara

It's so sad that this is the norm with us many times. I definitely feel for you. I've never been braisen enough to file a complaint, but there are so many times I wish I could have. I too react to a lot of medications and have actually been denied medical treatment because of that. I have asthma, and can't handle albuterol as it pushes my heart rate way way too high. There is another medicine called Xopenex which is like albuterol but doesn't cause the heart related side-effects. Had an instance where I went to the ER for an asthma attack, with a pulse ox of 73 (normal is 95+) and told the nurse I couldn't take albuterol. She said if I was "well enough to decline the medication, I obviously didn't need it"!!!!!!!!!!!! Seriously, ***? I completely understand the chronic pain. I have EDS and it wrecks havoc on my joints and I'm only 24. I too, have been treated like an addict - that is until the X-rays come back. I know the routine too well. Usually it goes like this Me: My (pick a joint) is out Dr: How do you know? And how did it happen? Me: No idea how it happened, I just moved wrong. I have Ehlers-Danlos. Dr: ('Ehlers-Danlos' goes right over their head) There is nothing wrong with you. Joints just don't dislocate. Are you here for pain meds? Me: No, but they would be nice. Dr: We can't give you anything until we take an X-ray. There is nothing wrong. (2 hours later, after the X-ray) Dr: I'm so sorry, here's some painkillers, you must be in a lot of pain. Your (pick a joint) was dislocated. ;) It's really awful. Hopefully the painkillers give you some relief, most opiates and anesthetics don't work on me, and walking it off just damages the joint more. Doctors unfortunately tend to jump to a conclusion that is similar to what they see a lot of. My parents were suspected of child abuse because of an injury I had to my elbow when I was 10. After hours of questioning, alone, I was finally allowed to see them again. Very few people have a kid with a collagen disorder, sadly, a lot more abuse their kids. Sara

On Sudafed, my heartrate is actually slower than it usually is. The doctor seems to think that it "tricks" my body into thinking there is too much stimulation and therefore, reduces my heartrate. Not sure if I buy that explanation, but it works. Fairly certain the same mechanism is at work with other stimulants. Sara

I know many people on this board have joint hypermobility or Ehlers-Danlos Syndrome. I was wondering what type of Doctor you see to treat this. I have an orthopedist that I see for the joint aspect of it, but I know there's a cardio component along with the neurological component. Thanks. Sara

My blood pressure does this too. Especially if I'm symptomatic, my BP is 160/100. When standing my BP rises, specifically the diastolic, which is called a narrowing of the pulse pressure. (BP goes from 110/60 to 110/85) I find that as long as I keep walking or moving, I don't have any problems, because the systolic rises as well to compensate for the movement, which is a completely normal response. Try taking the BP right after you stand and then as you're moving around (if you can). If there is a big spike, it should fall slightly over the next few minutes, until you're back in a more appropriate range. For instance when I stand I go up to 140/100 and then it drops over 5 mins to 110/80 and if I'm standing still the pulse pressure shrinks so I get a reading of 110/90. Now this doesn't happen every time, sometimes I stand up and the BP drops out right away. I think it depends on a lot of things, including stress, menstrual cycle, dehydration level, time of the day, etc. My BP is higher during the evening then the morning, probably because I have more water in me. Not sure about risk of stroke or anything, but I would talk to your cardiologist if you're concerned. Sara

I have gotten better. Not sure what to say to the doctor, as this was the solution to me being intolerant to meds. I have NEVER heard of a reaction to saline. I know it went into the vein because they stuck me three times and on the second stick it went subcu and I STILL have a big welt from that. (And enough bruises to make me look like an IV drug user) If it goes subcu it swells up under the skin. There's no way a liter would go in that way and I wouldn't be in horrible pain with an arm the size of Jupiter. I'm thinking that I have some electrolyte imbalance or that my kidney's aren't working properly. I don't pee much at all. About 400ml a day. I drink way more water than that. I have brought that up to the doctor and was told to drink as much water as I can and redo the test, which got the results into "normal". But, if you give me enough fluids I do pee. The salty taste after the infusion is what is bothering me. That makes me think that my kidney's didn't sort out the salt or another electrolyte was really off. They didn't test my blood, so who knows what the electrolytes were. I feel like the whole situation was just a comedy of errors. The nurses were NOT understanding about my condition, as they hadn't heard of it, and one even had the audacity to tell me I just needed to drink more water and take a pill(even though there is no pill that fixes this)! Believe me if it was that simple I would just do that! Also explained about the Ehlers-Danlos and I tried to educate her on the condition and got the response that I was just like one of the people in the circus. GRR!! That makes my blood boil! I am NOT a circus freak!! I'm just trying to live my life. So frustrating! Sara

I wear my sunglasses at night (when I drive.) It cuts down the glare and lessens any eye-strain. My boyfriend tried this, after making fun of me for it, grumble, and found that it really helped him. He gets migraines from glare and sometimes can't drive at night because of it. Now we both wear our sunglasses! It's awesome. Just have to be careful of drivers without their lights on.... Also his left pupil doesn't dilate and was told that people with migraine headaches have some degree of pupillary dysfunction and that was normal. Maybe the pupillary thing is related to migraines? Sara

Yes, I realize that IV Saline is just salt water, at the same osmolarity as blood, so there should be no side-effects, right? I got a bag of saline over 2 hours today. It took three sticks to get a viable vein and they tweaked a nerve on the second stick. ICKY! I am so bruised and have a huge lump on my arm where the saline went subcutaneously instead of into the vein.... Anyway, afterward I found myself feeling very nauseous and uncomfortable and full. Still sorta feeling that way. My heart was pounding and my head felt full. I thought my ears were clogged and I kept trying to clear them. Now everything tastes salty. Blarg! I'm drinking a ton of water to try to dilute the salty taste. It definitely got my digestive system moving though... This is normal saline! Everything should be perfect, I'm just adding volume. Why the heck am I feeling like this? I should note that this has happened every time I've had saline. Is the saline too salty for me? Are my kidney's not working properly to filter out the salt and this is hypernatremia? Did I get the infusion too fast? It was scheduled for 6 hours, but I'm not going to sit there for 6 hours unless I have to. HELP! Sara

I was told to try Ritalin for my tiredness too. The doctor also said that Sudafed (the real stuff, pseudoephidrine, not the phenylephidrine that is on the market now) would work too. I take that when symptomatic and it helps a lot. Might I suggest trying Sudafed first, as it's over the counter to see if that helps you, and then maybe progress to the Ritalin? That was what was recommended for me. Sara

MSG is evil!!! I have such severe episodes if I eat MSG. Ate Chinese beef skewers (no idea what they are called) as was SO nauseous, I thought the skewers went bad, but no one else felt sick. It took almost 3 hours for the sick feeling to go away and I had just had one bite. Now if I go get Chinese food I make sure it's MSG free and the sauces are on the side. Sara

I was actually told that I could have children if I wanted to and there was really no problem in doing so, as I would probably feel better while pregnant. Now, I don't plan to get pregnant for a while yet, and will recheck the research when I do. I'm scared about what being pregnant would do to my body. (And am pretty sure I would be just as scared if there WASN'T anything wrong with me). I also have to think about passing on my Ehlers-Danlos to any children I might have, and that is more of a concern to me than how my body will react while pregnant. Just my $.02. Sara

I think there is a complete and total failure of the medical system in the US. (Can only speak of here, not sure if you're in the US or not) I had a car accident. My leg was completely numb. I have a blown disk in my lower back from it. At the ER, I was "boarded" in the hallway for 4 hours. After much manipulation (on my part) I was able to relocate both hips and my coccyx which returned some of the feeling to the inner part of my leg. I was sent home WITHOUT steroids for the spinal cord trauma and without ANY pain suppression. Granted it was flu season, but that was completely against book. My ortho, when I saw him about a week later, gave me steriods but told me it was too late- the damage was permanent because the spinal cord had been swollen for too long. He was appalled that I hadn't been given the appropriate meds. I am not overweight and consider myself to be generally pretty (or at least the boy thinks so ). I am highly educated. The doctor was flirting with me in the ER (BUT STILL DIDN'T GIVE ME THE PROPER, TEXTBOOK MEDICATIONS). Sometimes I have received very very good care. Other times the care is absolutely atrocious. I am lucky to have a good team of doctors. My PCP, Endo, and Ortho are all excellent. The neurologist I am seeing now for the car accident damage is very knowledgeable and knew about POTS (OMG!!), but others have been horrible. The autonomic specialist I saw said my POTS is viral (even though I couldn't remember getting sick) and would get better. He didn't even know about a connection between EDS and POTS and was not receptive to the papers I gave him. I have yet to find a good cardiologist, most around here have their heads up their.... well... yeah. The old joke is true. A medical student who graduates at the bottom of their class is still called Doctor. Sara