leah1321

not only did I have food poisoning before, but now I have pneumonia! It is so rough. I am in the middle of preparing a presentation for tomorrow, but I decided to check the forum. Thanks for your support everyone. I really wanted to get her and I could have won too, but I would have had to quit my program since I would have had to sue my school too. The school bribed me and I got it on tape- the guy I talked to is going to get me a new job and a summer internship. I am furious and I told him that they better start to educate their workers. He said he would contact the numbers I gave (I got that on tape too) and would make steps to educate all the people at the school. I want more and will work with some disability people in NYC to educate. I am also mad because the ex-boss is hurt that I thought she was a bad person. I know she was not deliberately being cruel, but she said a terrible thing. I want her to get that, but I think that she never will because she is just not bright enough to understand much. She was always uncomfortable with me because she thought I was fragile. This is a lame and absurd thing for a 30 year-old to believe. I told the guy to let her know that she should keep her mouth shut around disabled people just to stay safe. He said that they are going to have a bunch of meetings about disabled students because I am the first sick student to fight and not give up. I am the first to demand disability status. They never thought about chronic illness that way but he thought about it and decided that this made a lot of sense. I got somewhere, not where I want to be, but somewhere. I wanted to sue, but my lawyers (brother and boyfriend) said it would be a bad idea. The disability person I talked with also said not to sue but to 'consult.' This is a special case because I did not want to give up my program. Thanks again. Leah

Can't say much. Lucky me, I got food poisoning last week so I am still very tired. I am up because of the nausea, actually. Have class at 9:30 AM too! ugh. Thanks for your support. It means a lot. I met with the head of Academic Programs and he attacked my character even though he thought my grades and professors thought I was a bright student and hard worker. He was listening to the story my old boss' boss told. Ugh again. He regrets saying the things he said. He also admitted that they told him that they fired me because they were 'uncomfortable with me' and that they were afraid to give me harder work because I was tired (never said a word to them). Considering that everyone got mailings, this is obviously a lie. they fired me because I am sick. my brother, a lawyer, spoke with the Academic Programs guy. he said he would try to fix my future to make sure I get another job next semester and a good internship over the summer. I hate being bribed. My brother advised I take the bribe. All I asked for was a formal apology of I am sorry I hurt your feelings. My ex-boss admits most of what she said but maintains that she did it to be nice. She just doesn't get it. She is sorry I feel hurt, but not sorry that she tried to help, or so she says. I am going to meet with the disability expert at my undergraduate institution to ask about what next. i want a future and it is a very small field. I can't antagonize, but I think she should at least be educated. I want so much more, but so did African Americans right after the Civil Rights Act. It takes time and someone willing to sacrifice a lot. I want to be that person, but I don't have the money to live on, the energy to pursue another career or the access to health insurance. I wouldn't want to be forced into depending on someone. I will see what the disability expert says. She is really mad, but usually has constructive answers. Thanksa again. Leah oh no, 5 hours sleep. Ahhhhh. d'oh. stupid food poisoning, stupid nausea that won't go away. :-p

I get it. I have been told it is a type of migraine aura. Caffeine helps as does a little heat. Mostly, you just have to let it pass. Can't read during it and I am a full time grad student, so hard. I would love an answer. I was told I had Adie's pupil- my left is larger than my right and not as reactive to light some of the time. This is not permanent, just sometimes. It is a symptom of autonomic nervous system dysfunction that only some get. Sometimes that seems to correlate with the vision thing, sometimes not. It is most likely a lower level of profusion of blood to the brain, I think. I hate it. Feel motion sick often with it.

Hi, This story is long and upsetting and is still going on. I will just quickly summarize as I want everyone's opinion and/or support. I was laid off last week. I am not too upset that I lost the job because it sucked. I got paid nothing to do nothing. It was a work study position through my school, so it is an ADA school thing. Anyway, for the first half hour of our 45 minute conversation, she talked about other stuff, not about my work. I never missed work because of my health. I never complained about how I was feeling. They now claim that I was tired and inefficient because of it. They never said that to me and it is blatantly false. I was tired, but never said a word. The conversation started with my boss saying she thought I was overwhelmed. I said I was fine and was doing well in school. She then said she thought I had no future in this field (museums) and that I would not be able to get a job because I am too sick. I work very hard in school and have been at work and I never told her what my illness was. She wanted to know why I needed to have a bag on wheels and she wondered if I could ever function in a job if i can't even carry my own bag! She stressed how she thought the only job I would get would be one without benefits, but she volunteered to help me get it. She said she had to let me go when she did because they were doing construction in the building and she was 'worried' for me. She thought I would have trouble with the stairs. I never NEVER complained about this. I am a big girl and took care of it on my own. Lastly, after she let me go for budget reasons and because she had lost the person initially in charge of me, she said something terrible in passing. She told me that I should think about relying on my successful boyfriend for my future. I am a master's student at a competitive program, I think I should be able to rely on myself. When talking to the head of academic programs today, I was so upset that he just could not understand. He thought she was just trying to help and was misguided, I thought that she was hurtful and what she said was inappropriate and illegal. I know that what she said is against the ADA! I talked to some lawyer friends of mine and they said that her behavior was against the ADA (Americans with disabilities Act). She is both my boss and a representative/employee of my school. She told me I have no future, no future! I was devestated. What does everyone else have to say? I would love help. Thanks, Leah

Nina- I was going to have them done at Temple in Philly, but I backed out after the first horrible test. I was also offered them at Cornell in NYC, but I just had an EGG and called it a day. The EGG monitors the motion in the gut like an EKG but it is of the stomach and intestines. They have you drink many glasses of water quickly, ideally until you think you are going to be sick, and then they watch the motion. I had no motion in my stomach for a long time and almost threw up. Then it kicked in, but was slow and irregular. That is how I got the gastroparesis diagnosis. I know Johns Hopkins also offers these tests, but they were very hard to get into and the doctor I like there left. Leah

Hi. I went to my doc today and she suggested Lotronex for this junk. Has anyone tried that before? It is supposed to be in the same family as zofran. I like zofran a lot. There are apparently a lot of side effects when used incorrectly or inappropriately monitored, but she would see me frequently and have me on a very very small dose. Nina- it is crazy that we are exact opposites with this one. It is strange to have the upper and lower different. Very rare and hard to treat. My GI doc wanted to know if my neuro thought that my autonomic stuff will end soon because she knows of a lot of people who just 'grew out of it.' I am going on 8 years of severe illness and seem to get worse in a lot of ways. I think I might have to just live with it. She thought that was depressing and was happy to give me anything I asked for. That was a first for her because I think that before she was not actually thinking of quality of life. Now she really is- a real breakthrough for me. She also said that florinef can cause stomach problems. What does everyone know about this? Leah

this is me almost everyday. Sunsets are definitely not beautiful to me because I am usually still up to see them, not just getting up! I know all the late night tv well. I have grown used to this problem. I do my work later on in the day and try hard to take late classes and work afternoons and evenings. I sleep different hours. I take a muscle relaxant in order to sleep and prevent muscle spasms. This works well, but only to aide me in later hours. Naps naps naps. It is a very frustrating problem. I guess just try not to stress out about it. (hard to do, I know). My live-in boyfriend and I have a totally different sleeping schedule and it really bums him out. At least the cat keeps me company! Good luck and sleep well when you fall asleep! Leah

i have been told that they think that my POTS is autoimmune in nature. My ANA is only minimally positive and not all the time. however, i seem to have many autoimmune disease issues. I am getting worse all the time too. Here is dysautonomia+ something list: severe hemiplegic migraines myofascial pain syndrome and arthralgia (so painful, looks like RA or Lupus) gastroparesis lower GI rapid motility GERD and esophageal spasms allergies, seasonal and food celiac? female hormone problems ovarian cysts, irregular cycles TMJ I also have eczema, hmm breast adenoma removed iron deficiency anemia low potassium/hypokalemia muscle weakness gallbladder problems frequent kidney infections and skin staph infections insomnia! grr adie's pupil (the left one is larger than the right and reacts differently to light) my mom and dad both have hasimoto's thyroiditis and my thyroid is borderline low. my mom also has MS. Her brother had celiac and has insulin dependent diabetes. Her mom had diabetes and some sort of GI problem plus heart palpitations and autoimmune leukemia. My mom's aunt has rheumatic heart. My mom's cousin has alopecia. There is much more, but that is the autoimmune family history. It seems like I am likely to have or get an autoimmune disease. I think it would help a lot to get a solid diagnosis and a different treatment plan. I am 23 so I do not want to have too many toxic treatments just yet. I wish I had a more solid and accurate diagnosis though. I keep getting more and more things. I have suffered badly for almost 8 years now and have had some symptoms (GI and migraine mostly) since infancy. I would like an end to these issues, or at least control of them and the prevention of more. I still have an organ or two that works normally and I would like to maintain these and improve others. LOL. Leah

hi I tested positive to all the blood tests for celiac and have that and other autoimmune diseases in my family. I had a colonoscopy and they said that there was only a 10% chance that I actually have celiac. My doctor decided no. I am on a wheat, barley, and rye free diet. I eat organic oats and spelt due to research I have done, the fact that I have no obvious symptoms from these and because my doctor said that I was just wheat intolerant like lactose intolerant. i think she might be full of it. She is supposed to be one of the best in the country and is at Cornell. however, I think she messed up on this one. I have iron deficiency, low B12, magnesium, and vitamin K levels even though I consume large amounts of these things. These all started in the last year and my blood test was for celiac two years ago. I have had bad GI problems since early childhood and am now 23. I don't know if and when I developed it. Your research is immensely helpful. Thank you. I would love advice. Would you really say no false positives, because my docs think I might have been one and I don't think so. I am very curious. Thanks. Leah

I have gastroparesis. I take zelnorm- it works. I put on a lot of weight, too much really! I still have times when I don't feel well and I am almost obsessed with food now (it is somehow related to SSRI drugs and I feel some sort of weird emotional side effects). Otherwise, it is pretty good. It definitely empties my stomach. I am allergic to reglan, but many doctors start with that to try to jumpstart the gut. Colonics would not work because your stomach will remain paralyzed. My upper GI tract is paralyzed and my lower GI tract is too rapid. I get esophageal spasms and stuff coming up most of the time. I was told domeperidone would be ideal for us, but it is not FDA approved and my dr. was worried about telling me to get it. She did tell me about it and there is a study with it at Cornell med school but I failed their qualifications (big surprise). The diet is a huge huge thing. Stick to it! Start with liquids any time you feel bad, then move on from that. I was getting times when I had more than a liter of fluids sloshing around in my stomach as it tried to digest without peristalsis. Liquids were easier to digest and went down easier. Eggs work well too. I think zelnorm is good. There are questions about side effects like chronic severe diarrhea causing dehydration. I take a 1/4 pill three times a day, so it is a very small dose but enough for me. I do not get the side effects they report. Most people take a much higher dose. Take 1/2 hour before larger meals and before bed. (that really helped me because I think my stomach stopped all together at night and I had no voice for months from the reflux and I was already on both nexium and protonix!) I hope you feel better soon. One easy remedy for meat digestion- take papaya enzyme pills- it practically liquidizes the protein! Leah

For you guys who take triptans (zomig, amerge, imitrex), do you ever have high blood pressure (I mean separate from the meds)? I have had migraines ever since I can remember. I get them bad and without meds, i get them daily. I am afraid to take triptans because my bp goes to about 160/100 range when I have a migraine. Triptans can cause elevated bp and stroke in people with uncontrolled high bp. i take many meds. The ones that should work on a headache are: neurontin, acebutolol, bextra, ultram, and fioricet, percocet, or vicodin as needed plus benedryl or zofran for nausea. I often use caffeine and tylenol together as a quick fix when I have the aura. I find that my short term memory and my speech are affected by neurontin plus I get 'narcoleptic' type episodes from it. This stinks because I am a grad student. I get way fewer migraines now and I don't have the weakness, paralysis on one side aura that I used to get. Well, occasionally I get them, but not all the time.

yep! Described me exactly. I am 23 and get hot flashes. Sometimes I sweat when freezing. I get frequent night sweats. Sometimes I am so cold that I feel like I will never get warm. I have the heating pads and the microwaveable booties and the fleece blanket I wrap around me. I also layer with tank tops on the bottom and heavy thing on top. I love scarves- easily removeable. Fleece socks for bed and wool socks for daytime with a change of socks in my locker. I have many layers of blankets but keep the window open a little in the winter so that I can quick cool down if need be. I get these the most during the week of my period. Also when I am sick. DancingLight- you and I have so much in common. I am Jewish; I knit; I love movies; I LOVE my Cornish Rex cat Elizabeth Kitty Stanton; I like yoga, but can't do it because of an inappropriately healed broken wrist. I have booties for my feet and everything (mine are from origins). Just thought I would say hi. -Leah

i have very dry eyes. I get cysts that rupture and ulcerate the eye when I sleep. Here is something that my eye doc gave me that helps a lot! (only use it at night because it is yucky in the eyes during the day, so you need a different type of eye gunk for daytime. Use it when you nap too. Sleep is when we dehydrate and bodies just need fluids. The eyes lose fluids too. When the heat turns on, the dryness gets so much worse.) So the stuff is called Muro 128 5% ointment (sodium chloride hypertonicity opthalmic ointment, 5%). It is like gatorade for the eyes. Put it on the inside of your lower lid before sleep. It is gunky, gross, and difficult to get used to. Your vision is a little blurry right after application (you are sleeping, so who cares). It is a bit $, (20$, I think). You can find it with the eye stuff or ask the pharmacist for it because sometimes they keep it behind the counter, but an Rx is not necessary. It is actually a hypertonicity agent, but I find that it lubricates the eyes for 6-8 hours. Nothing else I have tried OTC seems to do this. My autoimmune diagnosis is inconclusive thus far. Looks like I have something, but what is unknown. Also, my blood tests are not too bad yet, so they are not treating the autoimmune side. A Sjogren's test might be good for you. If you just have dry eyes (which feel awful), I think Muro ointment might help. Also, eye allergies are something to consider.

My gallbladder does not work right either and has not since I was about 17, when I was spilling salts and bile. I cannot tolerate fatty foods at all! I would like to have mine removed, but my doctor does not seem to think that I should do it with all my other health problems. She has suggested I start taking pancreatic enzymes and other digestion aids to help with the gallbladder until it either fails so miserably that I must have emergency surgery or removed it when everything else improves(likely never, so emergency it is). I hope you find that your health improves now that your gallbladder is gone!

wow! Feel better! That teaches us to take chest pain seriously. If you feel unusually bad, get to the ER. Thanks for keeping us posted. I only hope this is the answer for you.

I had the same experience as you. I went to the PT for knee problems and I was very weak. I was dragging my leg behind me and could not do anything without crutches. My PT could not believe how weak I was and how much pain I endured. Also, I have a broken wrist right now but did not think I did because even with the swelling, I did not have much pain. Sure, there is pain, but I figured it would be unbearable. Also, i have constant, unrelenting spasms in my neck, face, shoulders, and other places, but I have no choice but to deal. I take medication and I exercise and that helps, but I am in constant pain. We deserve to whine sometimes! By the way, the PT helped me a lot. That and neurontin. Keep up with the exercises even when they are hard! It'll take a while, but do it. I am so happy I did the PT. Leah

Wow, are you kidding?! I have a lot here, but I will try to be brief. 1. Leah 2. 23 3. POTS, NCS, VVSyncope, GI dysmotility, hemiplegic migraines, fibromyalgia/myofascial pain (more there in the autoimmune realm, but no definitive diagnoses as of yet, working on it) and more, but probably all tied to general dysautonomia. 4. 18, but first got terribly ill at 15. Have gradual onset and have had symptoms my whole life. 5.New York, NY (originally from Long Island) Hello from the tri-state area! 6.Not sure anymore, changes with the different 'attacks.' I think my worst symptoms are pain, fatigue and migraines. Pain includes GI pain and distress, severe migraines, leg cramps, terrible neck tightness and pain, and chest pain. I am so so wiped. Also, the memory loss and brain fog are really awful because I am a grad student. oh yes, and INSOMNIA ARGH! 7.the Palpitations suck and they are there everyday. I have grown accustomed to them, but I hate them. I have trouble with muscle spasms. I have constant nausea (doesn't prevent the weight gain right now) and esophageal spasms are a frequent occurence. dizziness and weakness. lots of weird things that add on, those are the most annoying. I get very low potassium sometimes and now I have very low iron and I have weird infections and injuries all the time. They make me mad! GI upsets are frustrating. Woman problems like weird estrogen or progesterone levels interferring plus ovarian cysts. You get the picture. Clamminess is embarassing and awful. 8. tried so many things. First thing was nortryptaline- that one almost killed me, reglan allergy, two calcium channel blockers, a different beta blocker than the one I take, celexa, prozac, zoloft (all three made me deathly ill), mestinon, multiple birth control pills and hormone pills and depo-provera, H-1 and H-2 blockers (antihistamines and acid blockers like zantac), topomax, depakote, etc. 9. I have a pretty good combo now that works quite well when I am not in a bad attack. I had a year and a half of mediocre to decent days. Now, eh.. Neurontin, sectral/acebutolol, potassium, ultram, bextra, zelnorm, protonix, nexium, zanaflex, florinef, allegra, birth control. PRN: percocet, firoricet, zofran, benedryl (nausea), nulev for exophageal spasms. taking folate and vitamin c also. 10. NEW ONE: I am a graduate student studying decorative arts and material culture (museum, art, antiques, history). I am a history geek. What is your deal/ passion?

find out if you are anemic. I say this just because I just found out about my anemia and I discovered that NCS/POTS share some symptoms with anemia, from dizziness to brain fog and even tachycardia. Many menstruating women have anemia, especially with heavy periods. That said, I have experienced the symptoms you talk about plus severe migraines right before my period and fatigue to beat all other fatigue during (in addition to the wooziness, confusion, headaches and you know the rest). I try to avoid my period by taking bc pills. I also take them because without them I get huge, painful cysts. Good thing is that when I am on the pills, I can control when I get my period and also it is much lighter and only two or three days! This is a great thing. I don't like the strange hormonal feeling you get when you start them and there is something in the body that reminds you that you are on them. Can't explain, just is. There are many side effects of bc pills, including high blood pressure. This might be a good thing for you. I think they are worth tryin because you can always stop. I hated ortho-tri-cyclen and all of the progestin only meds (do not do depo-provera, NO to it). Everyone's body is completely different though. The meds for you might not be the ones for me. You really need to experiment. I also do two months on, one week off, instead of one month cycles. I think I might even go up to a three month thing, not sure though. This is great because I have time to regain stamina afterwards. I get more bloated, but I think the water retention, while uncomfortable, is also beneficial in some ways because I am able to keep more fluid in my body. I would try something since there are many different options out there. I also take extra beta-blockers during this time, but be warned that this will wipe you out more. Does anyone get bad night sweats during their period?

Why is it that they call these benign? I know they are not malignant, since they do not kill us. However, benign implies good as it is from the Latin word bonus, meaning good. I do not feel like these PVC's, PAC's, TAC's and whatever else we get is good. I have had event and holtor monitors and I get so many of these things and they tell me that I have them and who cares, they are just benign. They cause chest pain, wake up, make you out of breath, and just feel terrible. I campaign they change the term benign to something like, eh it won't kill you, but it sure hurts arrythmias. I used to have IST and V-tach and some other malignant one and needed to have a cardiac ablation. I had damage to my heart that is minimal, but was rapidly getting worse. My doctor feared I would need open heart surgery. The ablation was successful in getting rid of the malignant stuff, but it did not get rid of the other arrythmias or the tachycardia. Now my doc is like whatever, deal. I hate that everyone on the planet gets them, you just notice them more with this disorder. I think we notice them more because we have a lot more and for some reason they make us very uncomfortable. Obviously, our doctors don't actually get many of them. Sure the heart miscues sometimes in every human, but many many times a minute for hours, hmm that is a little difficult to ignore. Benign, hmph. (Rant meant to be a little sarcastic, not actually completely embittered by the system)

i have to admit that i did not read the rest of the posts. I think that you absolutely have to examine this weakness. I had left sided weakness for several years and it got progressively worse. I used a cane and crutches for a while. No one did the tests I should have done, so I am still a little wary. However, it was discovered that my weakness is a type of migraine and sometimes I just get the aura, which is the paralysis or weakness part. Mine is called hemiplegic migraine. They found this when I went to the ER with paralysis and weird, very weird feeling. They did a catscan and other tests and diagnosed me with these migraines. My neurologist at that hospital started me on Neurontin and within 3 or 4 months, my weakness improved. Combined with intensive physical therapy, I am close to 'normal' now. With bad migraines, I get paralysis and weakness again, but not lingering afterwards. I am no longer ambidexterous, which stinks because I broke my right wrist. I drop a lot of stuff, I trip a lot. I cannot run, but who wants to with POTS. With frequent exercise (not hardcore, just leg lifts or weights or walking everyday) keeps me going. That and 3600 mg of Neurontin daily. :-) Anyway, moral of the story is: examine and then you might be able to treat. It might be serious, might not. Sure they cannot cure most of these things and often can only treat basic elements of the symptoms and then you do the rest, but isn't it worth the try?

I wish you health during your pregnancy. I am partial to girls myself, although I like having brothers. Having a human doll sounds like fun (so kidding). I even have two girlie cats. I am a ardent feminist, so rock out woman power. And may you and your baby have the best of health.

my ferritin is 6!!! Quite low. My doctors kept sending me back and forth to each other's nurses and ultimately my PCP said that he would see me. He thought it was an emergency but was not the original doctor to do the test. The rheumie did it but he thinks that this is a more general, comprehensive health problem, you get the idea. Anyway, I am going in in two weeks to see the PCP and have another series of tests. I did not realize quite how serious it was until I read up on it. I thought I was just in a very very bad attack of my POTS, but some of the symptoms are the same, from bad brain fog to tachycardia to shortness of breath, dizziness and extreme fatigue (man, am I wiped). I figured it was all related to starting a new graduate school program. I think I should probably go to the doc sooner, but I got worried about my school schedule and the exhaustion of travelling the two hours needed to see this doctor (insurance only covers Long Island where my mom lives and my school is in NYC, 60 miles west of my mom's house). I am not feeling well and am not sure what to do. I am eating a lot of high iron foods, even more than the large number I was eating before, so we will see if that helps. One good thing was that my hemoglobin was up from the 10.8ish it has been running for the past year. I think that is why they did not suggest immediate shots. My hematocrit has also improved, but it was only a tiny bit below normal anyway. My red blood cells are low though. I think I do have celiac, but now I am wondering if I should have zero gluten and see if I get better or repeat the tests after having gluten. I feel lots better on a wheat free (not necessarily gluten free, although I do not have barley or rye, only spelt and oats really and there are questions about the gluten content of those. In Europe, many celiacs eat oats and sometimes even spelt) diet. I am so frustrated by all of this. Now I have an eye ulcer or something too. Grr. Several members of my family had leukemia, actually the same kind, but on different sides of the family (apparently a type common in the Jewish population) and so I know about erythropoetin and I hope that can help me and I will not have to turn to iron pills. A roommate I had second year of college had two weeks of HEAVY bleeding every month and needed iron pills and they made her violently ill and so she kept quitting them and would only start again after she started fainting, they were that bad. I have had stomach erosion and have almost constant nausea as is, so I worry. My periods are extremely light, so I can't imagine they are the problem. Whenever I think I am in a lull, it all gets worse again and usually all at once. oh, my B12 and B6 have been low too. Thanks all for your help. I appreciate it as I am concerned and never had to deal with this problem before. Gena and Steph- I am so happy you got better and can share your success with me!

I am making my wheat-free round challah with raisins as we speak. Happy New Year to you too. And I hope we all get better! Thanks for the post. Leah

Hi again. Yeah, so my life is bad right now. I even found out that an X-Ray of my wrist after a fall was incorrect and it turns out I have a broken right wrist. It is one of the carpal bones and might need surgery Yey. That is not why I am writing now, but it gives you an idea of the place I am in right now. There is more in the unfortunate accident column, but more of that later. I just found out that I have low ferritin. I am not sure how low, but it is low enough for the doctors to conference call, then call my mother and tell them that I need to call back ASAP. It was the doctor himself too, not a nurse. He also asked what tests I had had related to this in the past. Of course, since I never knew I had this, none. I did have some anemia and vitamin K deficiency in recent blood tests for the first time in my life, even after severe hemorrhaging a few years ago. I think the anemia started around the same time I tested positive, by blood, for celiac sprue. However, I did not have a conclusive endoscopy and they decided that I most likely did not have it (they put this at a 90% likelihood of not having it). I have been following a no-wheat but not obsessively no-gluten diet for the last seven months because we decided that it was probably just wheat sensitivity. I got better quickly and then much worse again a few months later. I was thinking could this be the cause? I do not bleed much at all (sorry guys), barely at all. I have had blood in my urine in the last year, but what else can cause this? Does anyone else have iron-deficiency anemia? Anyone else have all these things? Has anyone tried the iron supplements? I heard they are rough on the tummy, is this true? Any ideas to help me out? I have been craving a lot of beef (even though it kills my stomach), eggs, raisins and such, so I figured I was anemic. The daily eating of high iron foods has not helped. Thanks, Leah

Hey all! So, I am in the middle of terrible relapse after a year of decent health (not great, but you know what I mean-decent). So, I am having a lot of bad episodes. One of them is a type that feels like narcolepsy but I know is passing out. For once in my life, i get zero warning and I have NO control over my body. NONE. It is weird. I have always been able to maintain a certain amount of control, but mostly because I had enough warning to get into an ok position before and could think to land on my knees or sit down or something. This one also occurs while lying down. I get this overwhelming, just compelling urge to put my feet up and close my eyes. I lose muscle control in my neck (bad because I have some sort of inflammatory disease there) and I lose control of my arms in the same way. Just drop stuff. I float in and out of consciousness, almost paralyzed for anywhere from 15 minutes to several hours. I feel paralyzed when I 'wake up.' I am frequently aware of my surroundings but am unable to interact. People are noticing it in my classes and they think I am a slacker who is falling asleep. I am in a grad program and this is not good. I have spoken with the profs about it and they are very understanding, very, it is great. Only thing is that I have lots of yawning first (always had it and I know it is a poor oxygenation thing, but it used to just be an annoyance), so it really looks like sleep. Next thing is that I have started sweating A HUGE AMOUNT! After three years of absolutely no sweat except on my hands and feet, this is weird. I used to get very overheated, turn red and then have a high body temperature then dizziness, etc. Now, it does not even matter if I am overheated. I am just sweating. I understand why this happens, but I want to know what to do about it. It wipes me out and I just can't seem to catch up for several days. Unfortunately, I have been having many days of this. It is a weird, clammy sweat that never drips but sticks and is copious amounts. It does not smell like sweat either, it smells like salt- seriously. It looks and feels gross and I am just so so tired. I have salt and gatorade and water and all those things, but how do I stop the actually sweating process earlier in the attack. It is often even when i am not hot, but just in an almost crisis point. Sometimes it is a heat thing too. Anyway, after eight years of illness, to have a sudden change that is just not 'typical of me' is very frustrating, so I could use the advice of others to learn about these topics I never read about before. Thanks. Leah I have multiple dysautonomia diagnoses from hyperadrenergic POTS to VV Syncope and NCS, etc.