Jump to content


  • Posts

  • Joined

  • Last visited

Posts posted by Elfie

  1. I can't answer questions about the adderall. I would talk to your doc about whether mixing what is probably still in your system with coffee is ok.

    As for your experience before, during, and after exercise I would have to say that it is the same thing I experience. I generally handle working out fairly well and as long as I don't push it like crazy I feel great during my workout (If I overdo it I can end up pretty dizzy at the end and after my workout). I have an hour with give or take where I feel great (more alert, less dizzy, less brainfog). Then that wears off and the dizziness returns and I will be way more tired/fatigued. On nights I work out (I hit the gym in the late afternoon before I head home, usually 3:30-4:30) I tend to get home, showered, and then I crash on the bed and want to sleep-- which is very unusual for me during the day, and annoying now that I have started midodrene. Coffee will get me going, and can sometimes help even with the dizziness but I usually have to have between 2-3 cups to get the vasocostriction and feel alive. Obviously, that isn't the best at 5 p.m. and can cause some other symptoms like shaking and flushing from the caffeine.

  2. Ihatebananas-- That has been the most frustrating part of exercise for me. I really enjoy exercising and being active, and I was really active before I got POTS even through the first year-and-a-half of symptoms-- which is why I hate the deconditioning theory. When I first got sick with POTS I had just left a job where I ran chainsaws and edgers all day and spent a lot of time under a tractor changing parts out and wrenching on things. I could bench press my body weight and was rock-climbing for an hour three times a week. Then I spent 6 months where I was sparring with a army reservist for a couple hours a week and was walking several miles a day. Deconditioning has nothing to do with it in my case. I do tend to feel really good during and directly after exercise if I don't overdo it (clear head, reduced brainfog). Unfortunately for me, the effects don't last and I tend to get a slump a couple of hours after exercising where the fatigue really kicks in. I have seen a slight decrease in heart rate (about 10-15 bpm) but haven't had less dizziness or brain fog in the rest of my life.

    TXPots-- Thanks for replying, I will PM you.

  3. Do you take florinef? Not to scare you off of it, but that sounds almost exactly like what I was experiencing before my doc and I realized I was allergic to florinef. I don't have any food allergies, but am allergic to things like preservatives, msg, artificial/altered stuff and get the same mouth/face swelling and itchies/hives from those. Apparently for me, florinef fits into that.

  4. First, I will answer the OP's question so not to threadjack.

    I started exercising in September by slowly swimming laps in the pool. Just one length of the pool would increase my heart rate pretty dramatically, and leave me a little breathless. As long as I stopped between each length (and later as I progressed between several lengths and then several laps) to let my heart rate get back to "normal" I didn't experience dizziness since I was essentially laying down. Only when I really pushed it did I ever deal with dizziness in the pool. After having done that for 5 months I had built up to being able to swim 100 to 150 meters (4-6 lengths) at a time without stopping. From there I started doing cardio on a bike at a moderate hr (for me) until I got dizzy from doing it. At first it was at 12 minutes, but I progressed fairly quickly to 15 and then 20. I also started lifting light weights while sitting or laying down and working on my core strength laying down. Right now I am still doing the biking and weights, but I am starting to be able to do more upright exercise (like a few minutes on the treadmill) without dizziness. I know for me that I have found (now that I am in a bit better shape) that if I am able to maintain a fairly brisk pace (walking or hiking) I can go much farther without symptoms. Walking at an everyday pace or having to carry something (backpack, grocery sack) or having to stop momentarily or slow down is still killer. My 5-10 minute walk to class with a couple of books through a parking lot can kill me, but 10 minutes at a faster continuous pace on a treadmill is so much easier to take. I am still at the begging stages though.

    TXPots-- I have so many questions for you . . . I was just so overjoyed to read this thread and find out that there were other people out there that can do significantly more exercise than they can deal with standing. Is it alright if I start a new thread to ask you some questions or PM you? I would really like to know more about your experiences.

  5. As far as I know I have no reason to suspect MCAD, but have POTS (am 21 and otherwise very healthy, with some fibro symptoms-- been tested for everything under the sun practically). I get this frequently. I am having it right now. My cardio says it is a POTS thing, and he is very good about investigating symptoms that could have other causes.

  6. Persephone, I have a feeling that most of my symptoms come from the "lack of blood to my brain" issue. I don't have coat hanger pain, but I am definitely more mentally clear when laying entirely flat. Propped part of the way up is better than nothing, but I often can't sleep when I lay down for bed because my mind is significantly clearer and I start thinking (of course, this is near impossible to do while reading, writing or studying). I need to learn to keep a notepad next to the bed, because of course if I have to get up I loose all the information I come up with. I also generally don't have low blood pressure, even when I am dealing with being extremely dizzy and feeling faint. My body seems to compensate for a long time and then I will suddenly tank and faint. Activities that spike blood pressure in normal people can sometimes clear it up (very temporarily) as well and I have migraines from changes in blood pressure.

    I'm sorry you had such a bad experience with American universities. My first experience with disability services was absolutely horrible, so what I am going through now is actually a big improvement. Your accommodations sound great. Our library allows all liquids with a lid, so at least I don't have to fight that one, but I have had to before with computer classrooms. One of my biggest issues on campus is the lack of places to sit! Other than classrooms, there are no lounge or study areas in any of the buildings except for the Student Union and the library. I can't hike halfway across campus to be able to sit down, let alone put my feet up. That would be great to be able to do! Another big issue is presentations. Most of my profs require powerpoint for oral presentations-- but all the materials (including the computer, ect) are set up at standing height. I have permission to sit during presentations, but there isn't a place to sit. I have asked for counter-height stools in my classrooms, but was told that I would have to provide them. I have a folding stool, but I cannot carry it to class although it truly isn't very heavy-- I just have symptoms when I lift or carry things when standing. I need to look over my accommodations from this past semester prior to my appointment.

    Sarah-- thank you for the info on the doxepin.

  7. Thank you both for posting!

    Sally- I don't have a doc that is good with that sort of thing. We have a neurologist in the area that is renown for it, but my experiences with her have been negative. She wasn't able to find any deficiencies and we also tried a elimination diet for 4 months. She seemed to get very frustrated with me because of her theory of medicine being very integrative. I did not do well on the elimination diet or any of the other changes she made. I kept having to increase my calorie intake and still was constantly fatigued when I was eating good fats, a variety of veggies and fruits, brown rice based carbs, and lean meat. I lost 14+ pounds in 2 weeks that I didn't have to lose (I was 5'8" and 130 pounds of mostly muscle). I am considering going back to see her though, because I know many forumites have had success in some way with supplements or modifying their diets. Do you find that using your wheelchair and avoiding the standing/walking helps prevent brainfog and other lasting symptoms-- at least before doing something that requires lots of braincells?

    Hilbiligrl-- Thank you for sharing your experience with me. It sounds like you have been through quite the ordeal, and I totally relate to some of the experiences you described. I started my semester today and I can already tell I am going to be in for it! This is one of my last semesters and I have many classes that are highly discussion based, and small. Professors that have always been able to work with me have told me that there is no way I will be able to pass the courses unless I can keep my attendance up. I really struggle with walking to courses and then sitting down and having to speak! I never had a problem with public speaking in my life, but POTS is making it the bain of my existence. I have gotten very slow if I have been standing or done anything up and about prior. I sound really dumb, lose words, and have recently started stuttering-- oh joy! Hopefully I will be able to get through it.

  8. Thank you both for the information. Sorry it took me a few days to reply, but I am sure you all know how it is. I know some others use these type of medications, but it isn't something that has ever been discussed with my doctor. I may have to mention it at my next appointment at the beginning of February. Were your experiences good in general?

    Anybody have anything else that helps with brainfog? Even behavioral type stuff? I'm not only looking for solutions, but perhaps understanding the causes of it in us POTSY's as well because any info of that type might help my doc (cardio, some POTS knowledge, but restricted outside of cardiac/circulatory symptoms) understand and provide help.

  9. Hey everyone,

    I have one semester below my belt at my new college. It was really difficult adjusting to a totally different situation and trying to do well in classes. One of the things I seem to really struggle with is brain fog. Unlike my other college where I was able to set up classes where I only had to go in three days a week and had time between classes, I haven't been able to do that here. Before I was able to get to classes early and sit and let some blood get back to my brain before instruction started, and also had a couple of days a week I was able to study without having been out and about and on my feet.

    I commute 45 minutes one way. The college schedules courses in the same classroom 5 minutes apart. So, you can never get settled in the classroom more than a minute or two before instruction starts. Even with handicapped parking, I often have to park several buildings away and come early to get a space. There is no seating in the halls and they are narrow and I have been stepped on several times sitting on the floor. Needless to say, I am dizzy from walking/standing when I am in class.

    Then I am also having problems with studying. After a day of running back and forth to classes and doing errands on campus, let alone if I have to go to a doc appt or run an errand in town, I'm often dizzy enough that studying is nearly impossible. I was working out two days a week and after I came home those days I just couldn't seem to function mentally. Now my doc wants me to start doing it 5 days a week.

    I honestly don't have any ideas about how I am supposed to deal with this brain strain, and the doc has been no help. I have spoken to the disabilities service office at the college, but they weren't able to do anything about any of the problems I listed, since they would be major undertakings for the college.

  10. I honestly believe it is the POTS. I am 21 and female and started with cyclic hair loss when I was 19, about a year after first having POTS symptoms and right about the time they started to get bad. I went from having lots of hair to having noticeable spots where my scalp shows through my hair. The hair loss does slow down, usually in times of lower stress/symptoms and has even begun to grow back at times. However, I never have enough time between flares for enough growth to make a difference-- so my hair is pretty constantly thin. Every time I am making progress on growing it back, I start loosing rapidly again. I loose wads of hair a day during a flare and have even had acquaintances pick strands off my shoulders. The docs can't find any other reason for it. I don't take either of the medicines that the OP uses and my hair loss began prior to being on any drugs.

    For those of you that also have experienced hair loss, what have you done about it? When I first started loosing I freaked out and didn't cut my hair for a long time because I feared that if it was cut in a certain style and then the loss continued I wouldn't be able to hide the thin spots. My hair got pretty long, but was thin and scraggly. Treatments like Nioxin make no difference for me. When my hair stopped falling out about a year ago, I cut maybe 6 inches off. Six months after that the hair loss started again and I haven't cut it since. Did any of you cut your hair short? Did that seem to make a difference?

  11. Hey,

    Just wondering if anyone has ever had a bad allergic reaction to Florinef? My cardio had never heard of one (in reality) involving hives. I have, at least what I think, are hives (look similar to the ones I used to get as a child from exposure to MSG, but the location is a little odd) on my lower stomach and upper thighs, with some on the lower legs. They mostly cropped up at night (some during the day) and on areas where I have tight clothing (sock and underwear elastic,where pants crease, ect.). Anyway, they appeared accompanied by shortness of breath and some mouth/lip swelling two days after I started Florinef. I have been off it for three days as of tonight and there are no new hives (took a Benedryl today though) and the others are faded. However, they are leaving hyperpigmentation/bruises. Anyone else had a similar reaction?

  12. I have had severe joint and bone pain in the past. Docs at Mayo (AZ) told me that it was nervous system related, similar to fibro (not muscle pain, no trigger points)-- but not. They said that it was probably related to the POTS as a rare complication of dysautonomia can be joint/bone pain. Some docs will disagree with this though, but they attributed mine to a misfiring of my nervous system.

  13. I received the regular flu vaccine last year, but not the H1N1 vaccine. In my area they did not receive the vaccine until very late in the year, and by that time I had been exposed multiple times but hadn't caught it, so I left well enough alone.

    This year I was vaccinated. I had no problems with the vaccine, even with the new H1N1 component. I have never had the flu, but I do have severe reactions to viruses that tend to make my POTS worse and it takes me a much longer time to recover from the virus, and even longer to get back to normal POTS-wise.

  14. When my gyn talked to me about Mirena she said that their office frequently uses a local when inserting on women that have never been pregnant and most women only experience period-like cramping afterwords. However, she cautioned me that many women that haven't been pregnant have vasovagal episodes during insertion (not related to pain). She thought this might have a higher likelihood because of POTS.

  15. At 10, you son is able to do anything and everything that you struggle with. He should be picking up the house (especially assuming that it is most his and your husbands stuff, usually the mommies that have to pick it up don't leave much around). Kids generally start doing a good job of sweeping about 8 and generally enjoy making dust piles. Another idea is to sweep and then suck up the piles with the Vac. Ten year olds are old enough to run the vacuum and do the dishes. Some can even clean the bathroom. At 10 most kids want to help out a sick mommy and like feeling capable, plus, they are more than ready to start learning how things are done and should move on from kiddy chores like taking the trash out. Picking up the stuff laying around daily and sweeping up (unless you have a giant house) is not to much to expect of a 10 year old daily and probably won't take more than 30 min.

  16. I typically have icy feet and lower legs. I have always had cold feet in the winter (even during childhood) but my feet are pretty much consistently cold post-POTS. No idea what causes this, but I don't pool in my legs. I think it could be due to excessive capillary constriction do to hyperadrgenic POTS-- as suggested by a cardio, but this cardio really wasn't very impressive. I otherwise have strong pulses and circulation in the major vessels in my feet and legs.

  17. I was tested for sleep apnea and do not have it-- guess the correlation doesn't work for me. Although I do have poor quality sleep and trouble falling and staying asleep because of POTS symptoms, I am getting enough oxygen in my blood when I sleep.

  18. I don't have much knowledge of the leg sleeves. However, I will sometimes wear running compression tights (footless) or underarmour compression gear because I cannot tolerate things on my feet either. They offer a lower level of compression than anything prescribed by a doctor and therefore are generally safe to be footless. I have noticed some benefit, but not much. Then again I am not much of a pooler, both being hyperadregenic and because i have a foot condition that causes my lower leg muscles to work overtime. I tried a fairly inexpensive brand, but some of the more expensive brands are higher compression and actually will list their compression factor on websites, some are close to 30 and most offer graduated compression just like medical hose. The other benefit is that if you get the summer version they are nice and cool and still slim enough to wear under clothes. They look much more like the "leggings" that are so popular for younger ppl to wear under dresses too.

  19. I cannot tolerate compression stockings due to the neuropathy in my feet - with the burning and pain I just can't have stockings on or even socks for any length of time.

    I ran across these and was wondering what you all thought. Would these running leg sleeves offer the compression we are after? with only a few brain cells waving forlornly at each other, I am unable to determine whether iI would still have pooling in my feet or if the compression of the lower legs would be enough to decrease it.


    (I was depressed that I couldn't watch the local triathalon - tried to drive there but couldn't park and get out of the car - horrible weather, no energy - but I got to see pretty leg sleeves!)

  20. That was my first symptom and docs are still not sure what it is caused by. I actually though for two years that I was dizzy or passing out from the joint pain. Then I go to the doc and find out I have POTS. They were able to narrow my joint pain (which I swore was deep in my major joints) down to being nerve-related, but just like POTS there is nothing structurally wrong with the nerves and don't have muscle pain or the trigger points of fibro. Mine is not related to gluten or starch. I have had periods this year for the first time in three plus years where I have relatively little pain and am only getting a lot of it when I am stressed, run down, have done a lot. In this way it is very similar to my POTS. If it starts bothering me in a more intense/constant sense again I will try to look into it more, but we only have one neurologist in our community and she bills to all insurances but belongs to none.

  21. I have had similar problems recently with my usually awesome family doc. Other docs insist that I'm depressed (which im not), but he has always stuck by me. Then the other day my dad was in for a physical and my family doc starts asking about how I'm doing (I haven't seen him since I've gotten back from school). My dad goes on to tell him that I am a perfectionist and that i stress myself out. Neither of which is true, its one of my dad's problems with identifying what is "normal" for ppl my age. Apparently, binge drinking is "normal" but studying is not. Anyway, the doc then tells him that he can cure my POTS--- with a mild anti-depressant. This is the man that has always been reluctant to put me on anything. I know that it is a common treatment, but for this doc it was a complete 180. I was shocked, partially because he was discussing my medical issues with my father! And then telling a man that doesn't understand POTS that he can cure me with a magic (psych) med. Wasn't a good idea. I guess the doc's sister has a very mild case of POTS and anti-depressants have solved this for her. I love my family doc, and he is the only person locally that is willing to learn about POTS, but this almost made me want to go searching for somebody new!

  • Create New...