Elfie

Thanks everybody!

I am actually really sorry to see this is such a common feeling among all of us, because in my opinion it ***** and nobody should have to go through it! It is also so frustrating that no one has been really able to find a way of dealing with these symptoms. I agree with all of those that said I just have to keep a good attitude. I think Algernon Syndrome is a very apt description of the problem- but a little sad . . . Flowers for Algernon always made me sad. I really relate to those of you that are having problems doing mental tasks like paying bills, buying a house, going to school, ect.

I guess I am just feeling a little lost. I recently moved 8hrs back to my hometown and am living with my parents again to continue my education. Growing up I was very involved in running the household and I am having difficulty making those in my family understand that I can't be "the" major homemaker, work, go to school, and take care of my health at the same time. I'm also having problems finding a doc that is willing to learn about POTs to treat me beyond giving me one blood-pressure raising drug and telling me that that is as good as it gets. I'm also struggling to reconnect with old friends, especially since I haven't seen most of them since my diagnosis. That and finding work!

Obviously I need my wits about me right now, along with my patience! (stands up) Oh no, where has my patience gone? I seem to have lost my patience--- and my ability to do simple mental math, and remember my name. LOL

I really appreciate all the support and hopefully someone here finds the magical solution to this whole "brain drain" situation!

Hey everyone,

I haven't been on in awhile (I read, but rarely post). After getting out of a bad relationship this past fall I have been dealing with less stress and managing my illness better. However, some things in my life have recently caused my stress level to shoot back up and have really knocked me out. I keep thinking about the past 6 months and wondering what I was doing differently. I thought I had been doing so much better, but looking back I realized that it was because I was pretty much doing nothing but going to school and microwaving things. How sad!

Anyway, I'm really struggling with this increase in symptoms. I hate this so much mostly because of mental symptoms. Once I stand up it is like my personality changes. I don't feel like myself, don't think like myself, don't find things funny, do things I would never otherwise do, ect. Brain fog is the worst because I am an academic and even outside of those situations I rarely have anyone that can help me make important decisions. Not thinking clearly is like torture. It is bad enough not being able to do all the physical and spontaneous things that I used to enjoy (adventure sports, physical job, ect.) that were a big part of who I was, but without my mind working the way it should I'm just miserable. At this point I just wish I never had to stand up!

Does anyone else feel the same way? Any ideas for coping?

Thanks for listening you all!

Although I don't have any advice for the original poster I wanted to ask Sue if she had thought about requesting special seating. Although I am not sure where your daughter is graduating, since you said it was arena seating I'm assuming that it will probably be very similar to my own graduation (B.A.) I just attended in May. I personally would contact the arena or events center that they are having the graduation in. The stadium/event center that my graduation was held in has many areas with no seats on the balcony (ground level from outside) that are provided for people in wheelchairs and those with limited mobility/and or ability to go up and down stairs and most colleges are very similar. Generally because these were created with wheelchair users in mind you can bring your own seating (a reclining camp or lawn chair, perhaps?) and the staff at the events center are generally very familiar with those types of requests and will be more than happy to help you carry the chair or anything you need as far a accommodations from your vehicle outside if contacted prior to the big day.

Hey Angelika,

I know what your going through. The antibiotics may be part of the reason for rashes that coincide with sun exposure. I myself had many rounds of antibiotics this spring in an attempt to get rid of a stubborn sinus infection. Normally I have no reaction to the sun and antibiotics so I wasn't thinking carefully when my doc put me on a stronger antibiotic than what I'm usually given. I ended up with a week of horrible sunburn-like (but not) rashes after only minimal sun exposure. Of course, after i discovered the reaction I tried to keep covered up but there are some places that clothing and sunscreen just don't cut it, like hands. Certain antibiotics also stay in your system for longer than you are actively taking them.

However, on the other hand I have also experienced many of the other things you mention just in relation to POTS. I go through periods where i get bad scalp and mouth sores. I think that it is a combination of healing more slowly than I did before POTs and also having a weakened/confused immune system. After getting POTS i also developed the type of eczema that occurs in areas that your skin has been damaged. Nothing like horrible, itchy, red, raised sores that won't heal every place you get a blood draw or a scratch. The dermatologist I saw told me that this was because my immune system was confused and was probably related to POTS. I also get the the chest rashes although I've always chocked that up to heat rash-- I usually only get it when my body is not regulating temperature well. I will have periods where my limbs are very cold but my core is not and will wake up with miserable rashes on my torso. This also occurs during periods when I am not sweating enough.

These are all post-POTs problems for me and also seem to cycle with my other symptoms. These past 5 months or so I've had less stress and much fewer symptoms. I also haven't had problems with the sores or eczema. However, after moving (stress) and changing elevations recently I've had a reoccurrence of both the normal POTS symptoms and the skin issues.

we didn't ever eat much processed food and didn't use salt in cooking. My mother salts her own food, but never for the family. I personally do not care for salt on 90% of things, so getting enough salt for me is like torture.

Sounds kind of like me. I have always been fairly fair, but had an olive undertone to my skin and tanned deep and never burned. Got sick and all of the sudden I am like ghostly pale, no matter how much time I spend in the sun. Also have had reactions recently to the sun that leave a bright pink sunburn like reaction within a few minutes of being out in the sun. However, it goes away within a few hours of being out of the sun. It is worse when I take antibiotics. I know that antibiotics can cause sunburn and sun sensitivity, but I have never had a reaction related to antibiotics and sun until POTS.

Nope, no celiac, no food allergies. The only thing I am allergic to is certain preservatives in high concentration and unnatural amounts of MSG. Peanut butter gives my stomach aches, but I can eat endless amounts of peanuts with no problem. For a while I thought I might have a lactose intolerance, I switched to organic milk and haven't had a problem since-- and it tastes better! It is one of the only things I can taste the difference with. Was on an elimination diet for over a month where all my carbs came from brown long grain rice (and brown rice and quinoa puff cereal, and pasta) and vegetables and fruit. I also ate free range chicken and wild game. I came to the conclusion that I am the anti-celiac! In two weeks I had lost 14 pounds and never had any energy even though I was eating between 500 and 1,000 more calories a day and many more fruits and vegetables. I usually eat pretty healthy, wild game, low fat, lots of veggies-- but my body needs wheat and other hollow carbs or else I turn into a very grumpy skeletor. I eventually quit the diet because I had no change in symptoms and my weight still was going down after 6 weeks-- I just couldn't keep up with the constant eating. I am usually curvy and it was very scary to weight 125 pounds again like I did at 13 (I'm 5'8" and big-- broad shoulders, naturally muscular, the like) because of a "healthy" diet the docs put me on!

Only have 1 filing-- a white one. Never had any sort of metal filing.

Everyone reacts differently to metals and toxins in their body. Like with anything some people can tolerate exposure, or more exposure to different things. I know someone that was soaked in a mining substance but walked out of the ER the same day but one of the people that only had brief contact with the substance on his clothes and person when they were decontaminating him almost died of organ failure the next day with poisoning from chemicals/metals in the substance-- the government is still failing to regulate this supposedly "safe" substance.

Ha Ha-- this is so funny. Please don't give any of the emo kids/teens this idea. Pepto has aspirin in it and that can cause Reye's syndrome (turns your brain to mush) if it is taken by children and adolescents that may have or contract a virus while the aspirin is in their system. Most people don't know Pepto has aspirin in it and is not safe for the too-young-to-vote crowd. Can you see the headlines? "Alternative Youth Accidentally Poison Themselves in an Attempt to Follow Black Tongue Trend."

Yes, sorry, I meant her hemoglobin levels. I seem to get stuck saying "iron" all the time because my doctor kept repeating that (instead of using hemoglobin and other more scientific terms) when he was trying to explain the difference to my mother. She is really very intelligent, but when I take her to the doctor's office all of the sudden it is like she forgot all the science she has ever learned! I think one time she asked what estrogen was! Sorry about that. I have normal hemoglobin levels, and low ferritin.

No, I don't. Usually I can barely tell I have been bitten. I also rarely get bitten by mosquitoes, they don't seem to like me near as much as they like to chew on my mom, ex-boyfriend, brother, ect. However, I have bad reactions to gnat bites-- they swell up and create hard little lumps like mosquito bites do on most people.

Sorry you got chewed up, I hope you are feeling better. I always rub a little of my steroid cream (for eczema) on my younger brother when he is chewed up. Don't worry, his doc approves!

Hmm . . . I have no idea if it is POTS related. I also have tested very low in ferritin, like 4. However, because I had regular iron levels I was told not to worry. However, I have since been told that low ferritin levels might be the cause of my hair thinning. How was your daughters' iron?

Sorry I am not able to help more, I just thought I would go ahead and post that I have similar problems in case there seems to be a correlation amongst us potsies!

Hey everyone!

I just wanted to ask about everyone's experiences with florinef--

Does it work for you?

Did you experience weight gain on the med?

Was it hard to wean off of?

Did you have any problems with infections/colds or immune problems on it?

I recently went to a new cardiologist. He was pretty old school and prescribed Florinef to me. He insisted I try it over midodrene because "midodrene is so much newer and isn't natural." I asked him about side effects of Florinef and he said the only one I should worry about was a little swelling in my legs. So , I go fill the prescription (I had another one I needed to fill) and then I am reading the literature and it says not to take it if you currently have an infection and warns about potential immune suppression and weight gain. I don't think I realized it was a steroid (I knew it was a hormone) and got no warning from the doc. I currently have an infection, so I can't start taking it right now. However, I am not sure that I want to try it now-- and I have a whole d*mn bottle. Since getting POTs I have been sick more often than in my entire life and every bug I pick up turns into a sinus or ear infection.

So, just how seriously should I be worried about this?

Hey, I don't mean to hijack this thread but I have some questions about ferritin. When I was at the Mayo I had my ferritin levels tested for the first time (I've had many iron tests, but they are always normal). It was extremely low at like 3 or 4 and the G.P. I was seeing there said that the cardiologist would probably have me take iron supplements. However, the cardio told me that he wouldn't recommend doing anything because I had normal iron levels? Since then I have seen my own G.P. and he figured the cardio knew best. I am seeing a new cardio in my hometown and when I asked him he said he didn't know anything about that sort of stuff.

I use the 12 hour one. I have tried some of the other Afrin's and didn't like the formula as well. I usually use a neti pot before I use the Afrin and then only use the Afrin for the recommended three days but continue to use the neti pot to continue to clear up any remaining congestion. It works pretty well with colds and sinus infections unless you have a real humdinger.

I haven't tried it, but it is what my GYN recommended to me based on my menstruation and POTS. I am not currently on birth control to prevent pregnancy, but am and have been on it for the most part since I was 17 because of irregular cycles. I have gone off several times to see if my own cycle has/can regulate itself but it never has. Without birth control I often have a month long period with a one week break. Even on birth control pills I sometimes spot for several weeks. The GYN said that the mirena would be good at controlling blood loss and hormonally related POTs symptoms by lessening hormone fluctuation and hopefully limiting or eliminating periods with the fewest side effects. However, my insurance wouldn't cover it because although the docs felt it was the best method for me medically, it isn't "medically necessary" by their definition. I have failed on multiple birth control pills and the nuva ring and paying $800+ dollars for mirena out of pocket would be heartbreaking (and bank breaking) if it was incompatible with my body too. I have never had real side effects with a pill, but I have tried a couple where I bled almost constantly on them.

Afrin was recommended to me by my doc who wouldn't allow me to have other decongestants because of possible effects on heart rate. I do fine on it and it is pretty effective.

Flonase on the other hand was a disaster. I didn't have ANS symptoms per say, but I lost my sense of smell for several weeks. Not only is it annoying, and affects taste, but it can be dangerous since you can't smell things like smoke or chemicals. I wouldn't recommend it for that reason, but I haven't used it since my POTs symptoms became more severe.

Hey Frank, got to love that Yank joke. I have no idea if it is related to ANS stuff. It could be, I have noticed more ruddiness and flushing since having POTS. Have you tried pressing on it and seeing if your skin goes back to white after gentle pressure is applied? This might help you figure out if it is a circulation thing. Neck skin is very delicate. My father has a permanently red neck (he is 47) from sun damage. Years of tans and sunburns (he works outdoors) has led to little broken capillaries and general ruddiness that looks like a mix between shaving rash and a sunburn on already tan skin. It stays that way year around. I also know skiers and those that work in the cold and wind can have something similar happen with the micro-circulation. Surprisingly, my dad doesn't have this problem on his face (probably because he wore a hat). Just an idea, but it may not be what I'm thinking of at all.

Yeah, this is confusing for me too. I used to run suicides and not have my heart rate exceed 100 bpm. Now my heart rate is in the 130s just standing, in the 150-160 range walking at a casual pace, and over 200 if I am walking fast. During real exercise, even moderate, I will start gasping for air. However, the doc said it is hyperventilating because my brain is saying it is not getting enough oxygen. However, I don't think I am badly out of shape because I can work out and be gasping for hours, but never have sore muscles or any of the other effects of oxygen deprivation on muscles. I really don't know what is safe, becuase I already probably walk miles a day in the 160-185 range and that really isn't improving my fitness. However, I don't really think it is safe to have your heart beating way up above 200 bpm for an hour everyday.

I can't skip showering, no matter how it makes me feel. I generally have to see the general public everyday and if I don't shower it gets scary! I go through periods of weeks where I have uncontrolled sweating where I will drench my bed and clothes everyday, even if I am cold. My hair has gotten really thin and within like six hours I can slick it back with its own oil. I also have very strong-smelling hair and body odor, like a guy. So, I shower everyday and then still end up looking dirty and being stinky! No fun, but I can't manage showering more than once a day. So, to be honest, when there is one of these threads about how people feel gross about only showering once every other every third day I don't think you are gross, I envy you!!!! If I skip a day I can't put my head on my furniture because I leave oil stains!

Elfie,

It's amazing that your parents can help you with college tuition. My parents help me as well, but currently I must keep a job to pay for everyday things. We've had a few bumpy roads during the tough economy so I have to work and attempt school.

I am able to do what you seem to do with school, working days and taking days off, with work. School is harder for me, because it's like a train. I start off fine, working ahead and getting all A's, and I literally am completely healthy with almost no symptoms. Then a portion of the track is broken (an episode) but I can't see it, and my train is derailed. I can't get the train back on track because of all the extra work and stress it puts on me. I live a life where most of the time I am completely healthy and then there are times I can barely crawl out of bed.

I have disability statements but they aren't so flexible about due dates and absences. They let my profs know that I may be absent but basically don't give me any help with the repercussions of missing class.

I went and looked at the But You Don't Look Sick website, and I love it! I fell in love with the Spoon Theory a while back so I immediately bought a poster of it today. It'll be the first poster to adorn my bedroom walls.

Hey Sarah,

Yes, I'm lucky to have help from my family paying for things. I have worked and gone to school in the past and it was very difficult. I generally find most employers may be flexible with working around students' schedules, but they generally aren't flexible enough to work around my class schedule AND my illness. This year I haven't had any luck at finding work. I have to have a job where I am sitting. I can't wait tables, work fast food, or bag or check at a retail outlet. With the economy the way it is, there aren't many job openings for office-type work. Despite my dad having lost a job within the past year and medical bills, we make it work.

Your situation and mine do seem to be different. Perhaps you are taking too much on when you are feeling well. I deal with moderate symptoms everyday with more extreme episodes maybe a couple of times a month. There are some times when you really can't work on school because brainfog and being sick just makes it worthless to try. I try to utilize my good times and get as much done as possible. I also eliminate things that are triggers for episodes (germs, stress, late nights, ect.) I try to never miss class unless I am throwing up, passing out, or unsafe to drive (or ride the bus).

Maybe online classes would be better for you. I generally think they are easier to work ahead in. If you are always a week ahead, then when you have an episode you don't have to worry about it. You can also attend class from bed. If possible maybe you should try to take classes where you can easily get the notes without missing anything/the prof doesn't take attendance, or classes with less daily/weekly homework and a few bigger projects instead.

Yeah, disability services usually cannot enforce anything about allowing absences or late work. Some professors are going to be jerks about it. However, I have found most of my professors that I have had to explain my condition to have been very understanding. Although the disability services people generally don't encourage sharing about your condition with professors, I have found that it is kind of important with some aspects of POTs (like, passing out). This may not be the case with you since you are usually fine and only have severe episodes. See if you can talk to your professors and make sure that they realize when you are out sick that you are flat on your back in bed and can't be working and that you come back to class as soon as possible so you may not have makeup work done the day you come back because you have just been able to start functioning again. See if you can work it out so they let you turn in missed work at a set date maybe during the next week or so.

I hope that you can find something that works for you and your own unique circumstances!

aww, darn it! Why did you have to remind me of the time change! When I first read this thread I thought it was this past Sunday and I had missed it. I panicked for almost 10 minutes when I realized if I was going everywhere an hour late so was everyone at college. Then I calmed down. tee hee!

I get the random dream-like activity too. You feel as if you are in a dream sequence or the like. I also have those moments where I feel like I should do something that I never would do in real life, like those compulsions you get in dreams. One particularly bad week (sleep deprivation, POTS, and stress) I had been dreaming about smoking and went about my days craving cigarettes! Even weirder since I am not a smoker and never have been and being around ciggy smoke generally makes me sick. Yet, it took all my will power not to jump one of my friends and steal his butts. How weird! I also frequently get those dream-feelings and check to see if I am wearing pants because going places without them is one of my regular dreams.

It is bad when you have had a hard week and aren't feeling well and people at school (college) ask you to spot them some weed. I am not stoned, I swear. POTs can be all of the stupid behavior and confusion with none of the pleasant side effects (like reduction of nausea).

Hi!

I am a 20-year-old female student (was diagnosed when I was 19, had severe symptoms for two years prior to diagnosis). School is really difficult. I am lucky enough to have support for my parents and they help me pay for my tuition that my scholarship doesn't cover and help support me. To be honest, that is how I get through school. I don't work, am not a regular at extracurricular activities and organizations (although I do try to attend when I am up to it or am interested), and right now I don't have much of a social life. The first two years I was sick it was much harder because I was living with roomates and was very active with friends/a serious relationship. Now I live alone and see my friends on my own terms. It may not be true for everyone, but since I have been living alone I do much better. I get sick far less, my house is cleaner (with less work), and it is less stressful. My place is where I can come to relax and for the most part I can do whatever I need to meet my needs (no one complains about excess AC or my sometimes odd sleep schedules). Stress was really affecting my POTs and draining my energy, so think about a way to reduce it.

I always take between 15 and 18 credit hours (5-6 classes) because my scholarship mandates it. It can get really rough. I guess my biggest tip is to not get behind in the beginning. The start of classes can be stressful getting everything together, but it is really important to stay up on reading even when you aren't feeling well. I try to plan ahead and often spend weekends catching up or working ahead on projects because I am often tired and sick after a partial day of classes. The number of classes you will be able to take also involves the type of classes they are. Everyone is usually good at one type of class. Some people like a lot of reading, others like projects, others like those 3 tests a semester classes. Find out what is easiest for you and ask other students which professors teach like that.

I have also been lucky enough to schedule my classes only 3 days a week during several semesters. This really helps. It gives me time to work on school and also to rest. I don't have to get up the day after I have to go to class (I am usually wiped).

Visit disability services. You will probably have to bring a letter from your doctor or another record that indicates your diagnosis. I recommend the College brochure from Dynakids that someone mentioned above. It really is a good way to explain POTs to the disability services ladies. I have time and a half for tests (important for writing those essay tests with brainfog), am allowed to have snacks and water, and don't have to stand up for presentations, and a few other things. They also wrote me a letter about absences and flexibility of due dates.

I personally would recommend the But You Don't Look Sick site for tips. They have a student forum which has a lot of great tips. There are also lots of POTs/EDS-ers on there and other young people with conditions like lupus and MS that can cause brain fog and some of the other symptoms we deal with.

I am not being medicated or treated for my POTs at all right now because I haven't been able to find a local doctor willing to treat me. I generally have a resting heart rate in the 90s sitting, that goes up to 115 if I am thinking, and 130-150 standing. If I walk it is 165-200 bpm, so I am always tired. Hopefully you do have a doctor that can work with you. If it is hard to concentrate in class because walking all the way from your car makes you dizzy, don't be afraid to ask for a parking placard so you can park closer.

Feel free to Private Message me if you would like to talk more!

Or, you could just be a freak like me! I have never met a blood pressure cuff that didn't hurt (mine that inflates around my wrist is my favorite). I have been known to mess up readings because the cuff hurts/is so uncomfortable that I will unconsciously hold my breath at the docs. Same thing happens with blood draws, it is very painful. Must be something with my arms/veins. Other female relatives complain of similar problems (just not as severe) and are hard sticks as well.

Well, I think if your friend really has your best interests in mind and sets you up with a guy that you have something in common with I think that that is a great way to meet people. Two of my most recent relationships were with men I met through a friend. OF course, I didn't meet them on blind dates, but by accompanying my friend to events/dinners where the guys were.

I really understand what some of the other members were saying. Even a bad blind date is a chance to get out and socialize and turns into a funny story in the end. But at the same time, going out with people that really have no common interests with you can make you wish you didn't just waste those hours. After all, you could have spent that time doing something you enjoy.

I haven't had much luck with the whole online dating thing, but that is probably becuase of my age. I'm young (early 20s) and so many of the young men on dating sites from the 20-26/27 age group are online dating because they lack serious social skills. I mean, there are always a handful of young men that are dating online because they are in a unique position because of family or work and dating online is the easiest way to meet women their age with similar goals. However, it is my experience that most of the guys on the sites are either looking for someone to party with or are really arrested in their social development.