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Elfie

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Posts posted by Elfie

  1. I have been having some symptoms lately that a family member of mine that is fairly well versed in POTS is concerned might be related to someone else. I recently have been having lots of shaking and also been mildly stuttering when I am having a bad time with POTS. Does this happen to anyone else? I was never a shaker or a stutterer before.

  2. Yes, that does happen to me. I guess that it really bugs me when I am in spaces were people (or a person) are buzzing around because I either have to concentrate on what they are doing instead of my work or else I concentrate and can become very disoriented or feel unsafe because I finally come out of it and things have changed and I don't know when. Same with listening, and I used to be a great listener. Although I can't say it is all dysautonomia, my mother doesn't have it but when she works or is going to school she just has periods where she blanks out concentrating on something and you can't get her to respond to you until you touch her. It really used to upset me when I was younger, but now I understand.

  3. Do you live with someone? When I live with other people I tend to catch everything in the world, even if they are not sick. It is just like we are bringing home twice the germs. Now that I live alone I seem to get sick less often. That and that I refuse to wait in the waiting room at a doctor's office. I make them put me in a room straight away or I tell them I will wait in the car. I was constantly getting infected when I went in for an ear infection or blood tests.

  4. Similar to other posters. I guess I have fatigue daily that impacts my life, but there are times that it is very severe, sometimes for no reason and sometimes because of slight lack of rest (which is unusual mostly because I am 20 years old). The memory thing is the worse, however, it is also variable. Prior to POTS I had a mind like an iron-clad safe. Now I am doing things that my grandmother does like calling people by the wrong names and carrying the OJ into the bathroom and beginning to scrub the tub. I have pretty good recall on facts I learned a while ago, but not like my normal self. All of the sudden though it is impossible to learn new things. When I am not feeling like myself I can read the same thing 10 times.

  5. Ahh . . . the wall! This drives me nuts. I am a college student, so I have a lot of work to do at home and because of my class schedule this means afternoons and evenings. I hit that wall about 4:30 where I just get so tired I can't think. Then sometimes about two hours later I will be able to focus, but no matter what I am completely done by 8 o'clock. I can stay up later, but not function later. I need to learn to just take that time off and not work, but it is so hard when you have deadlines pressing and you lose hours a day. Also, when I was cooking for my fiance (we aren't together anymore) I would start during that "bad" time. It got to the point where I was burning myself and the food and cutting myself everyday. I just can't function. Sometimes using the microwave is too much. AHHHHHHHHHHHHHHHHHHHHHHHH! It is driving me nuts because I always felt better in the morning. Now I am not feeling well in the morning or afternoon or evening. I get maybe an hour a two a day that I am feeling okay, and a couple every week or two when I feel like a human being again.

  6. Blood draws are very horrible for me. I am a difficult stick. In fact, at the Mayo clinic I had two nurses and a neonatal IV specialist burst one of my veins and then have to numb them to get a needle in. They usually go in with a butterfly needle in my hand like they do babies. It is so incredibly painful to have an IV or to get blood drawn. It doesn't just hurt doing in though. It keeps hurting once it is in the vein whether it is bumped or not. I have no problems with needles and regular intramuscular shots don't hurt a bit. I have a high pain tolerance, it must be my veins. It is painful to have someone press on my wrist to take my pulse. I can never get through a blood draw without balling. I always have horrible symptoms after the blood draw, but I thought it was because of all the pain and stress it caused me. I used to have man-veins in my hands but they disappeared when I got sick. Everyone keeps telling me to hydrate--- but it makes no difference. It doesn't make me feel better, it does make things easier, all it does is make me feel uncomfortable in my own body.

  7. Hey, if you figure out what helps, let me know. I know it is POTs, not age, unless your mind just goes to pot when you turn 18 or 19. I was always a good student. I worked very hard in school, I taught myself how to read, and I loved it. Now I am in my third year of college and it is like my brain stopped working. If someone gives me all the parts to the problem and lays them out in front of me I can still synthesize a decent answer, but remembering it and communicating it have gone down the tube. I am spending twice the time I used to on studying and not achieving the same scores. I frequently can't write because I transpose parts of words. I live alone and I will get distracted by a though and end up setting a carton of orange juice on the bathroom counter and wiping out the tub or not being able to remember where I live after a stressful day a class. I have to lay down in my car until it comes back to me. It is literally driving me nuts! Listening to books on tape won't really help with concentration issues unless you are someone who is vary auditory, that is you can listen to a lecture and take no notes and remember it. It may help if you have eye strain though.

  8. I have never been able to nap during the day, not since I was about 6 months old. I can count the number of naps I have taken on my fingers. Now the only time I can nap is when I have been up for more than 24 hours, if I am not writhing in pain or throwing up by then. All I want to do is sleep all the time, but my body won't let me. I started sleeping eight hours or more a night when I was a infant, but since getting POTs I toss and turn and am disturbed more than ever. I have problems falling asleep because of pain and I CAN'T sleep in. If I do fall asleep during the day I end up with a horrible stomach ache and never feel refreshed. I just assumed all people felt like that, and I could never understand why people like to nap.

  9. Thanks Mack's Mom--

    After three years I finally got diagnosed with POTS, even though I was really concerned with my joint pain. I have seen a rheumatologist and neurologist at home and ones at the Mayo. They have all decided my pain is neurological. Because there doesn't appear to be auto-immune involvement they said the only thing they could do was put me on nerve pain meds. However, not one of my doctors is willing to do that because I young and they are worried about the long term side-effects of the drug. I am in pain everyday, and every few weeks I will get a bad flair where I spend most my time just trying to get through it because I can't think through the pain. Then there are the times I am rolling on the floor and throwing up because of it. Unfortunately, I don't know what to do about it, because driving 5 hours to see another doctor (and having to go back to them) is just not very appealing after having the entire Mayo clinic in Arizona tell me that there wasn't anything they could do.

  10. My first major symptom was severe joint pain. POTs seemed to develop secondary to that. Docs at the Mayo said that I probably had a rare form of fibro that was affecting the nerves in my joints, rather than in the traditional fibro points. However, other than things that I was told to do for my pots (light exercise, water therapy) I was told there was nothing they could do. Every doc I have talked to refuses to medicate me because of my age (I'm 20) even when my pain is debilitating. They felt no need to diagnose me and I did not pursue it since all of the docs I have access to feel no need to treat me with anything but the advice provided above.

  11. I am a senior this year and can graduate this spring, but may chose to continue for an additional semester or two and pick up one or two second majors. In my chosen field a masters' degree (or higher) is practically essential to achieve employment in the field. Everyone around me is preparing to apply for graduate school. For the first time in my life I am not sure of what to do. My first specialization interest within my field was made impossible by this illness and slowly my second one is being taken away. It is looking like my only option to stay in my field is to become a professor, which means getting a Ph.D. I am not sure that I could handle that level of coursework or the research thesis I would have to prepare. If I can't continue in my studies I would have to start over on a new degree path, back at the bachelor's level or try to find a job that doesn't have any specialization. Right now in my community there are no sit down jobs for people like me. I could work at walmart if standing all day doesn't kill me. I have lost a important relationship and most my friends because I am not "fun" anymore. Sorry for bugging you all, I just wanted to say that to someone.

  12. Hmm . . .

    . . . when I was a kid I used to wake people up screaming and talking in my sleep. I recently had someone who I was visiting tell me I still do on occasion, I guess there is just no one around to hear it now. I don't think I have true night terrors though. My dad does, and he also sleepwalks. I can't compare me screaming because I am being chased by cows (I frequently dream about cows, don't ask why) and waking up in the night because my dad thinks my mom is an intruder (or an alligator) and is forcefully trying to strangle her in his sleep. That or be up late studying in the dark (on the computer) and have him walking into the kitchen and start sharpening knives in his sleep or go out the door and start his truck and try to drive to work. Somehow I don't draw any parallels between the two.

  13. This is a topic I have been watching. I am very worried about swine flu, not because it is horribly serious, but because for me anything is serious. A cold can keep me from functioning for two weeks, and flu is worse. If I got swine flu I would probably lose my semester, and my scholarship. My area is short on regular flu vaccine. When it first reached out area in early Oct. I made an appointment and my doc ran out of the vaccine before my appointment, three days later. By that time Walgreens and the hospitals and clinics were out. One of the hospitals got another shipment last weekend. They were out by 9 a.m. I got one of the last flu vaccines in the state because a company that does vaccines from Arizona brought some over on Sunday. Now all of the states around us have the swine flu vaccine even though we have just as high of a rate of flu. I am considering driving across the state line to get it but right now you have to show your id at the county clinics (the only places that have it). Right now they are only vaccinating residents and illegal aliens. So, I am s.o.l. and my area isn't supposed to get it until November. I am a college student and we have plenty of cases of both flus on campus and I am about to my breaking point about people sneezing in class. The next person that tells me that they are sick and it isn't allergies is going to get it. I can only keep from killing people for so long. I don't mean to seem like a jerk, but so many people just think about themselves or feel that if they are sick everyone else deserves to be to. The only time in the past year I have gone to school sick was after I had confirmed with my doctor that I wasn't contagious. It is so bad on my campus the director of the health center found out about my condition and told me not to come in anymore, that it was risking my health too much to fill a prescription or have a doc check out my sinus infection there because of how many students come in and ask for drugs for something they are sure is a cold. He keeps telling students to stay home unless they have a high fever, but that would just take too much common sense. So now I have to fill my prescriptions elsewhere at full price!

  14. Hello,

    To answer a few of your questions:

    1. I do get significantly worse with a cold, the flu, or any sort of infection. I will generally have lower blood pressure and higher heart rate, even without dehydration. I will also pass out during these periods and a little cold is much more serious to me, with bad symptoms. I will also frequently get co-infections. I do not return to my usual POTs state until a week or more after the cold symptoms disappear. Therefore, I have a deep-seated desire to go ballistic at people who come to work sick (or at least highly contagious).

    2. I have had several slightly better periods with my POTs. They were all periods where I was having low stress levels and was only working eight hours a day, five days a week compared to the fourteen hours I tend to work when I am in school. During these times I felt better and was able to be more physical and do more without feeling like I was dying.

    3. I do take birth control. I have tried several multiphasic and monophasic pills and the nuva ring. However, I have only had success on one pill and had to go off for medical testing and then it stopped working. With all other pills (and without birth control) I bleed almost continuously. My pots symptoms are therefore worse when I am off birth control or when it is working poorly. My next step is to try the IUD Mirena, which makes me nervous because if my body doesn't react well, I am out $800 dollars.

    4. When I was at the Mayo Clinic I was told I could not have EDS, because I was not flexible enough. However, I have always been very flexible but was quite muscled up and stiff from inactivity at the time. I have had one physical therapist tell me my joints are overly flexible but my muscles are constantly contracted and working to control the range of motion in the joint. As I have less muscle mass I have recently been popping joints in and out of place, which hasn't happened since I was a child, so I don't know if they overlooked something or not.

    5. I have always had periods of hypoglycemia, but have recently noticed that my POTs symptoms get worse when I haven't eaten in a while, even if I am not hungry. However, this is not always consistent. Sugar doesn't appear to make my symptoms worse and it is frequently the only type of energy booster I can use if I need to study that does not give me headaches (although I can get tummy aches from it).

    6. When I first got diagnosed I drank a ton of gatorade. However, now it makes me nauseous. To drink enough to make a difference in my symptoms makes my stomach upset. This also happens with other salty things. It seems as though my stomach doesn't tolerate salt well, which may be why I never used salt much prior to POTS. Instead I have found a packet made by the same brand and Emergen-C that is for athletes. I buy mine at the health food store. It can be mixed with any liquid and is better than gatorade and doesn't have sugar or artificial sweetener. I would highly recommended against G2 or anything with artificial sweeteners as there are some studies that link their use to neurological problems, as sweeteners like aspartame turn into formaldehyde in the body and some of the others can effect the gi tract.

  15. I have only been to the E.R. on a few occasions. One was when I was 10 and broke my arm and most of the others were when I was younger than about seven. My elbows used to dislocate anytime someone pulled on them and I would have to go to the E.R. to have them put back in because my dad could not stand to cause me the pain that manipulating them back into place caused. The only time in my adult life was about two years prior to my diagnosis, most likely due to POTs symptoms. I was having severe pain, was losing consciousness, and then began to projectile vomit from the pain. A ex-boyfriend of mine insisted on taking me in. I was given I.V. fluids and inter-venous motrin and an anti-nausea medication. I.V.'s are magical and I had the best sleep I had in years. I have never been back and I probably will never go back because I no longer have a ride because none of my friends that live in the area have vehicles and if it was bad enough for me to take an ambulance ride, I probably would not be able to manage to call 911.

  16. I had a similar problem with my last boyfriend. When we first met he was having a difficult time and was undergoing a big transition. The first six months of our relationship wasn't equal, but it was fun. For the first year of our relationship, I was going to school full-time and working part-time and was undiagnosed but started having very serious symptoms. During the second six months I helped him financially, I did his laundry, I fed him, I gave him a temporary place to live when he was between places, and I called around town about two times a month to find his lost cell phone, wallet, or keys. During this time he slacked off and lied to me, which basically put me in a position with my apartment mate of the time that left me practically homeless for several weeks. He was supportive of a couple of rough nights and one hospital run.

    I agreed to forgive him for his lapse of judgment and we agreed that he would pay me back for some of the money he had borrowed since he was starting a well paying job. Well, he stuck with the job but spent his extra cash on toys. I forgave him and was still waiting for him to pay me back. I spent the next seven or eight months cooking two meals a day for him and doing housework, even when I burned myself because I was trying to cook dizzy. He thought we were even because he pretreated his clothes for stains and threw mine in the washer with his once a week (although I still had to fold them) and that he cleaned the bathroom twice. For about two months I was extremely sick with both pots and a chest infection and wasn't able to cook. He believes the fact that he made soup or sandwiches or McDonald's about four times a week equals all the complete meals I cooked him EVER.

    I also taught him how to run a household, how to manage his finances, and sat down with him several nights a week to guide him through his books for his certification tests. He has become a much better reader since we started dating because when he is away we communicate by e-mail and IM, where he has to read and spell and increase his vocabulary. He recently took an equivalency test and went from a third-grade reading level to that of an average adult.

    However, during our entire relationship he insisted on having sex, no matter how violently ill it made me or whatever other solutions I came up with so he could enjoy intimacy. Whenever I told him that I did not want to do it, he would pester me constantly and try to force himself on me, as well as tell me that he thinks he is going to cheat. I still have no desire to have sex. He still calls me up and asks to get back together, but wants it to go back to the point in the relation ship where "he had no responsibilities."

    Sorry about that, I guess that the comparison lies in the fact that he feels that he was doing so much work, even though I definitely put a lot into our relationship. He was only happy in our relationship when he was being doted on and got everything he wanted, no matter the cost to me. When I was unable to do everything and he started to have to pitch in and got a taste of what it was like to be me in our relationship, he could no longer treat me the way a girlfriend should be treated. He stopped taking me out or ever loving on me and would become violent and hysterical when I was upset about the disrespect he was showing me. He still can't get his head around it. He insists on calling me or showing up at my place and bothering me for hours, no matter what I say, but it is still all about him. I had to move out of our place because of the stress and the conditions were making me violently ill. It has really thrown my life for a loop and I may have to give up on school this semester and the next one to be able to recover from the pots spell I got from the stress and living conditions.

    Sorry for going off, it was just some parts of your description of your ex struck me as very similar.

  17. I don't wear compression because I rarely pool in my legs (I have a problem with my feet that causes my leg muscles to work extra hard, so I have serious runner's calves even though I don't run anymore and haven't in run in about two years) and most days I cannot stand to have a real waistband on, let alone compression. However, I have a tongue-in-cheek suggestion for how to keep you thigh highs up. In general, the ones with the silicone strips in the top will stay up better (this is what they use to keep panty hose and strapless bras in the bigger sizes up). Ok, here goes my suggestion, Why don't you buy a garter belt? If you aren't going to be wearing abdominal compression, you could use a garter belt to keep them up (generally preferable to suspenders, but the same effect). You can still buy the belts from a few retailers that cater to older ladies and also in colors in the sexy lingerie shops and catalogs. You could also try wearing a Spanx over your hose. Pulling the Spanx up would trap your hose under the leg bands, and they would probably remain in the upright position. Another option is using athletic tape to tape them to your legs. Not all tape is horrible and sticky anymore. You could also try bikini glue, which pageant girls and sometimes athletes use to keep their swimsuits in place. You can probably find it online. It usually comes in a stick form and is skin friendly. These are kind of silly, but they are definitely all things that you would catch me doing if I was having the problem.

  18. I definitely don't have all the answers. This young man is being faced with a unexpected situation. The girl he was interested in has a type of baggage that comes with her that will affect your everyday lives together. However, I think most of the awkwardness is coming from you, and how you are dealing with the situation. He sees all of these things happening, but I don't think you have truly sat down and explained to him what is going on. That makes him confused. He doesn't truly see the whole picture and know what is happening, and why it is happening and that can lead to awkwardness on his reactions. He doesn't know what is appropriate for him to do or how things work. That is awkward for him. And you yourself are probably feeling and acting awkwardly because you are afraid to paint him the big picture or inconvenience him because you feel that it isn't right.

    I think, since you guys are already spending time together and he is concerned about you and you are worrying about things like intimacy and spending the night, you are probably at the stage in your relationship where you should sit him down and tell it how it is. Paint the picture of your life in a matter of fact way. Tell him not to feel guilty if he decides he doesn't want to continue the relationship. If he is still down, tell him what he can do to make it possible for you guys to enjoy certain things together. Tell him if he wants you to stay over that he will have to deal with the barf bucket beside the bed! If you are at a stage in your relationship where it is horribly uncomfortable for you to talk about making sex more adaptable to you, or ask him to spare his trashcan for morning sickness, I am not sure you are ready to be having sex with him, because that is the reality of intimacy for you.

    As far as your own personal hangups go, it is hard to drag someone into something that doesn't seem like an equal relationship. Sure, if you guys end up together in the long run, he might have to do the vacuuming. However, I am pretty sure you will find some things that you are better at than him, like paying the bills and balancing the checkbook. There will be lots of things you can add to the running of a household, and lots of things you can teach him. Also, as another person noted, you will probably find things about him that you will have to deal with. As long as it isn't jeopardizing your health (mental or Pots-wise) then those things can be your trade off.

  19. Maxine,

    I think sugar substitutes of all kinds are evil. I have never been able to tolerate them, even when I was younger and healthy. Plus, they make me want to rip the skin off my tongue. It is poison. That is why it always freaks me out when people suggest G2 and other electrolyte formulas that have saccharin, sucralose, or aspartame in them. I like agave nectar and stevia though, probably because they are both natural and have been used for ages by traditional peoples. I recently found some drink mix packets called Electrolyte Stamina Power Paks. I think they are made by the same company as EmergenC and I found them in the health food store. They have 160 grams of sodium, 201 mg of potassium, 1200 mg of Vitamin C, and a few other minerals and vitamins with only 2 grams of sugar/carbs and eight calories because it is largely sweetened with stevia. It isn't that sweet, but it is not as sour and heartburn inducing as EmergenC. I can actually enjoy drinking it.

  20. I commiserate with you. I usually don't get the flu, partially because I get the shot, and for some reason the stomach flu just doesn't want to infect me. However, I get horribly sick with viruses. I can get a mild cold and be knocked out. It is like having mono, while everyone else just gets the sniffles. My biggest thing is that I am always having to hold myself back from screaming at the people around me for having bad hygiene. They just don't get it that I catch bugs very easily and if I catch it I will be out of work or school for days, if not weeks. I actually start to HATE people around me because of this. I mean it is so easy to wash your hands and cough and sneeze properly. If you are a snot fountain, don't come to class or work, and if you must, don't sit next to the immuno-suppressed person. ARRGH!

  21. Hey everyone!

    I have had a bit of a hard week. My grandfather died and I had to drive to another state to attend his services. I ended up spending 22 hours in the car this past weekend, most of the time I was driving. By the time I got home Sunday night my back was messed up, I had a migraine, and was in a flare. The next day I started throwing up. I would have thought it was a bug, but I had no fever or other symptoms and I could keep food down, as long as I didn't do anything to aggravate my POTs. However, I live alone, and therefore not standing up, experiencing stress (I got phone calls from my ex, and about my grandmother who fell), staying up to finish work, ect. was out of the question. Does anyone else have POTs related vomiting? If so, how do you deal?

  22. My hair started falling out right after I started having POTs symptoms. I have always had fine hair, but I used to have a ton! Now it looks really sad because you can see through it. I lost a ton, both from all over my head and in pencil-sized clumps. I was originally told it was from birth control pills, but I have dealt with pills before and never had this problem. Then when I was diagnosed with pots, the docs at mayo said that probably caused it. It does grow back, but every time I start to have more hair I go through another bad spell and start losing again. I also started going white at the same time. I am sure it is related to pots, because my mother did go gray when she was in her early thirties, but I started when I was 18! I'm 20 now and have a noticeable white streak. I love my natural hair color and am sad about this. It would be impossible to replicate with dye and I would look funny with a red or blonde streak where the white is (plus that hair is probably dye resistant) so I go around with my thinning white hair and my eye bags and wrinkles and people are constantly asking me if my kids are in the 4th or 5th grade. I don't have kids! If I did and they were 5th graders I would have to have had them when I was 10 years old!

    POTs ***** (the youth out of you)!

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