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Posts posted by Elfie

  1. I'm not exactly sure where this belongs, and I am sure there are other threads on this topic.

    Still, I'm nervous! I don't have a lot of experience with this and haven't gotten my own family sufficiently interested and educated. My ICE doesn't know what meds I take or much about POTS/dysautonomia.

    I've been seeing a new guy. The first guy since I've been diagnosed. I was in a very serious relationship (engaged) when I was diagnosed and it didn't survive very long after we figured out what was going on. He wasn't a very nice guy when stressed, but adjustment to POTS is the straw that broke the camel's back.

    I've been single for 2-and-a-half years.

    This new guy knows I have dysautonomia and actually understands some of the mechanisms at work. However, we haven't really gone beyond that "funny places I've fainted" and "please don't perform a sternal rub or call an ambulance if I faint in your presence" conversation.

    However, I recently had a near-fainting episode while I was with him, and he asked if we could have "the talk" about my condition.

    Any advice?

    He's an intelligent, technical guy and I am a very open person and fairly active POTS patient -- but this is still nerve-wracking.

  2. I posted a long time ago about a stressful situation and an apartment that I was allergic to (turns out the carpet padding had dry rot and the anti-flammable chemicals they treat that stuff with were setting me off-- plus I later discovered mold in the AC vents). The combo of the two caused a very big flare and I was probably the sickest I have ever been-- and it lasted for months after I left said apartment.

  3. I don't go. For years I've wondered if I am just not as sick as other POTS patients. Obviously, there are many POTS patients that have more severe symptoms, or complicating conditions. However, there are many patients that go to the ER for similar symptoms--- and I just . . . don't. Unless there is something new/potentially dangerous, I am in danger of dehydrating to the point of danger (vomiting and not keeping any liquid down over a long time), have symptoms of concussion or hit my head very hard, ect. I don't go to the ER--- there is little that they can do (because of ignorance), and it is expensive.

    Plus--- when you come in crying in pain, they give you saline and benadryl, and the pain resolves enough that the benadryl knocks you out, you look crazy.

  4. Dumb question-- what does the dysautonomia pin look like? Just the blue or red ribbon pin, or is there something else?

    I'm kind of a big fan of the zazzle stuff that says "Feel like running a marathon every day? No? Me either" and then something about Dysautonomia awareness.

    I don't have any of it (I'm a closet Dysautonomiac) but if I was going to support a witty logo, I can appreciate how that one simplifies things yet quantifies it in a way that is tangible for those without the condition. I've seen ones dealing with fainting--- but I think running until your extremely ill/exhausted/the toll it takes on your body (ultra marthoners or regular non-trained up people) is something more people can relate to than fainting or "tachycardia". Running a marathon without training for it could mess up every system in your body temporarily--- it would work the fainting and puking in!

  5. They gave me nitro during the tilt-- despite the fact that the techs or nurses administering the test thought that it might possibly cause my heart to stop.

    My tilt was a nightmare. I think in total it took like 3 hours. I'd had a CT the day before and no one could get a line in on me. I had like 13 different sites and two blown veins before the neonatologist came in, numbed a place in my hand, and got a line in. So I was already in pain, worked up, and upset before the tilt. And FREEZING/shaking. Then they tilted me for a very long time because I never did pass out (probably because I was already in flight or fight?) and then did the nitro.

    I'd say it was the worst experience with docs ever, but I had a similar situation with getting a line in for an MRI and laying there with blown veins after 4 hours of being stuck. The tilt only was the icing on the cake.

  6. I personally think POTS is so hard because it steals both the physical and mental ways we cope with everything else in life. I've been through the death of close family members (young and old) and other people I care about having horrible diseases like cancer. I don't have kids but I played caretaker to my younger sibling for most of his life because someone had to.

    I find POTS difficult to deal with because the effect on my body has taken away parts of me. When I am angry or stressed I can't go work out my body by taking a run, hitting the heavy bag, lifting weights, or even dancing. When I've lost people I've cared deeply about, I can't cry and grieve and deal with it all at once-- I have to shut off my emotions and then go back and deal with it a little at a time, feeling that early loss and pain often and even years later to avoid putting myself into a terrible flare. When I see people around me struggling I cannot take care of them, physically-- or often even have the prescence of mind to comfort them on a mental or emotional level. My body cannot deal with the good physical stress of getting stronger, the good emotional stress of growing, the good mental stress of experiencing new things, my body can't take going on new adventures-- or take the stress of relieving the stress of others.

    I am still a strong and intelligent person (POTS hasn't changed who I am on a fundamental level)-- but I rarely get to share my intelligence and strength with those I am close to, let alone the world. Because of both the physical, mental, and emotionally disabling aspects of POTS I feel completely trapped-- like a coma patient that still has all of the potential in the world, but all that potential is locked into a shell that keeps it from getting out.

  7. I recommend using members of your family as heating pads.

    Sadly, I'm half serious. I get bad enough situational vasoconstriction that my hands and feet literally don't produce enough heat to warm themselves back up, even if you trap it in-- likewise, my own body normally isn't warm enough to warm my hands. However, I find that heating pads and the like are "painfully hot". I preffer to stick my hands on a dog - - - or a willing victim. I find young men particularly useful as they tend to have active metabolisms and radiate heat.

    Honestly--- when it is 12 degrees outside and you are still cold inside at 73 degrees, your just pretty much . . . yeah.

  8. I am able to work, although I am not working currently. I was a full-time student for the first four years of my illness and then worked-- however, my temporary position is up and I am looking for another job. It is difficult to find a job that will accommodate my needs while using my skills in this economy. Although I did quite a bit of standing at my last job that was moderated by the fact that I worked in a climate controlled office-- 63 degrees inside. That and for the most part I could sit or squat when needed.

    Shopping is really difficult for me-- I do it, but it completely wipes me out.

    Moderate exercise is one of the things that keeps me sane. I love to swim, recumbent bike, and even hike when it is cold. However, I was a athlete prior to pots and what I do now is difficult and pathetic compared to that. My cardio also insists upon it-- no changes/help if I am not keeping up with my end.

    The catch-22 is that if I am working and managing to keep myself fed and in clean clothes I really don't have the energy to do anything else. I have no social life to speak of and my free time is spent being frustrated because I don't ever have a break or a chance to enjoy anything because I am usually so exhausted that I can't even follow a TV show or movie-- let alone a conversation with a friend or a trip out of the house. Reading and doing anything to further my education also has gone down the drain.

    I guess I am lucky because for the most part many of my previously debilitating cardiac-type symptoms have been managed to some extent and that means I am able to keep it together enough to get through the day without fainting. However, despite physically being able to push through the sickness, nausea, discomfort, lightheadedness, ect. I still deal with HUGE amounts of cognitive dysfunction. Basically the meds can't mask that my body is still struggling to be upright. I am able to work because my last job was very systematic and my days were well laid out by my supervisor-- on bad days I could just kinda stumble along mindlessly.

    The cognitive disfunction, confusion, exhaustion and more minor symptoms like nausea, lightheadedness, heat and cold intolerance, are accompanied by chest pain which keeps me up at night.

    Basically, I deal with all the same symptoms I did when I was first diagnosed and fainting several times a week, but cardio meds now allow me to push on through all the rest of the symptoms because I know I am not going to fall down. It doesn't leave me with a good quality of life though.

  9. I was diagnosed with atypical fibro just prior to my pots diagnosis. However, I have been largely in remission from the severe pain for two years. I get an occasional flare, but have found reducing stress (caused by interpersonal relationships) and water exercise has helped greatly. I still have pain when I end up with a few stressful days or weeks though. My body just doesn't do stress-- which is terrible because my mind is excellent at coping!

  10. I was told that the severe brain fog that is more apparent when sitting or standing or symptomatic is caused by insufficient oxygen to the brain in most people-- particularly when they have times when they seem to have normal functioning. My neurologist wants to check me, but she would have to send me back east to one of the fancy ortho labs to do that, so we are waiting to see if I can get in for testing.

  11. Hi Bear's Mom!

    I have POTS. However, my current neurologist was one of the very first doctors to ever work on POTS research at the Mayo Clinic. She pointed out that POTS is actually a redundant name for what is essentially a orthostatic syndrome (postural and orthostatic describe the exact same symptoms). Some people with OH have tachycardia, some don't and those that do may or may not meet the POTS guidelines for beats-per-minute. Just like some POTS patients may or may not have low BP. I think many of the people on the board actually also have vasovagal syncope and OH, but they just simplify it by calling it POTS. Tachycardia is also often the symptom that cardiologists without experience focus on, while many of us are barely bothered by it while OH taunts us. Anyway, t isn't any wonder that your doc is treating you the same. POTS patients, especially those that take beta blockers can have the same mechanisms and symptoms at work as OH and vasovagal patients.

  12. Hey Everyone--- thanks for all of your replies and I apologize if my question was confusing.

    I understand that there are a lot of dysautonomia patients that benefit from wheelchair use. I also know that sometimes they meet resistance from doctors that are afraid of "deconditioning." However, I usually only hear about patients that are homebound, bedbound, or only use their chairs for special outings (that is, they are too ill to work or go to school full time, and therefore only use chairs to get to doctors appointments or out on shopping trips or other special outings). Generally these are the same people that always have someone to help out with the chair and therefore don't necessarily need a chair that is super-easy to lift or push, because most of the time they are not relying on their own strength/energy to use the chair, or only go short distances under their own power.

    TLC's Mom-- I really appreciate your comment because your daughter's situation seems to be similar to what I was asking about. It seems as though your daughter could probably get by (with a real struggle) without her chair (since she does walk and goes to school), but it makes the difference between her having the energy and feeling well enough to be herself and be able to participate in activities other than the bare minimum of school, if that.

    I was curious because I am one of the POTS patients that does go to school full-time, as well as drives. However, I find that my productivity and how I feel crashes after a minimal amount of time on my feet doing daily activity and once I get to feeling poorly, I seem to lose my mental clarity and ability to keep symptoms at bay all day. I can definitely walk to my class, but my performance and focus takes a major plunge. Similarly, I go to school full-time, but by the end of 5 or 6 hours out of the house (most of that spent sitting, with just intermittent walking in between) I am done for the day and often to ill to complete anything at home. It is a struggle to get the bare minimum done as a student and get through the day. I graduate at the end of this summer and am looking for jobs. I found something that I would really enjoy, but I wouldn't be able to handle the amount of walking. I have noticed however, that on days that I don't have to be standing for much more than to grab a shower and some breakfast I am able to do so much more and feel much better. I once had a doctor suggest that I use a wheelchair to increase my amount of productive time in a day so I could have a bit of a life (I admit, as grateful as I am that I still can go to school, I had complained because sometimes it feels as if all I ever do is work and be sick). I was reluctant at the time, still in the stage hoping that I would continue to feel better with new medications, ect. I am no longer under his care, but the job situation has got me thinking about it again.

    So, I was just wondering if there are other fairly active people that work or go to school full or part-time or otherwise spend most of their week out of the house that use a wheelchair to increase their stamina or decrease their symptoms or because it allows them to be able to work or go to school or do more? Like I said before, I haven't really heard about many, if any dysautonomia patients that use a wheelchair that they self-propel themselves that they transport themselves-- basically haven't heard anyone that uses a wheelchair more than once in awhile completely independently, which would be my situation.

  13. You know, I was reading the current wheelchair question on the first page of the dysautonomia discussions section and decided I am finally going to ask the question that always nags me when I read about dys wheelchair users.

    While I often hear about how wheelchairs are either detrimental to dys patients (from docs) or how much they have helped patients that were mostly bedbound or homebound to get out and do more. However, I often hear about dys patients that use light transport or hospital-style chairs because they are cheap and the patients can't manage to self-propel much or they use an electric chair or scooter (those that aren't at a risk for loosing consciousness while sitting).

    Are there no dys patients that have an active life and are able to self-propel? I mean, are there any dys patients that use a light or ultra-light wheelchair meant for those that self-propel (sports chairs, ect) daily and not just for special outings? Obviously it isn't good for dys patients to wheel all the time if they can walk-- but does anyone just a chair completely independently for work or school and all the other aspects of life outside from short walks/around the house?

    It might be just me, but it seems like I never hear about or from dys patients that achieve something from using a wheelchair that are already active enough to continue living a more "normal" life.

  14. Confused a bit--- is this because I suggested Ensure? I didn't mean Ensure itself, but rather a product like Ensure (I though I specified that, but probably wasn't very clear) that is used as a nutritional/caloric supplement. Although almost all of these type of things have some form of allergen because of the source of protein (whether it be whey, soy, ect) picking one without the allergen you are trying to eliminate might be a solution. The OP says his son isn't eating, but drinking milk instead. If milk is a possible problem for dys-symptoms they have to replace the milk with something and if he can't tolerate solid food he needs something nutritious to drink. The only other alternative I could think of is a g-tube or IV nutrition. Obviously, it would be best to avoid this if not necessarily.

    Definitely did not suggest soy. I have a relative that stopped growing early because of the hormonal effects of large amounts of soy from a young age. Sorry if I confused anyone into thinking I was advocating for soy or that Ensure was milk-free. I was using ensure as an example of a nutritional supplement rather than advocating that was the one the OP should try.

  15. Thanks for listening guys!

    I really don't have a ton of options as far as other doctors go. I was really lucky to get into the only doctor for 600 miles that was familiar with POTS, even though he doesn't have much experience treating it. It seems as though the problems are 1) that he is one of the best cardiologists for hundreds of miles and so he is very hard to get an appointment with, ect. and 2) that he doesn't seem to want to treat any symptoms that are not "heart problems." While on one hand I can understand this, on the other hand one of my main complaints is fatigue, which is being severely exacerbated by MY HEART MEDS. While I don't want to quit taking either of my meds (I am a complete mess without them, it is pretty nice that for the most part the floor has stopped spinning all the time) the fatigue is literally cutting what I can do in a day in half (after it was already cut in half by POTS). I had a doc at the Mayo (when I was there in the summer of 09) suggest I try a stimulant medication. My PCP, which I adore, thinks it would be much better if my heart doc monitored that med since it could cause cardiac symptoms-- and because it is to counteract the effects of my other cardiac meds. It might also possibly help with my brain fog, which is another of the three symptoms I still find debilitating.

    My CHF testing that he did came back only borderline high, which apparently my beta blocker can cause. I had experienced sudden unexplained weight gain with the increase in fatigue and had 9 of the 10 markers. He said he would keep an eye on it. Obviously I am glad they weren't in true CHF ranges, but obviously my symptoms are severe enough to suspect it. So why is he leaving me hanging completely on treatment for them? OR even the suggestion to see another doc, ect?

    Other than that I am not totally sure what could be done or suggested to deal with the symptoms that are still driving me up the wall. We don't have a local endocrinologist and my endocrinology studies in general have come back pretty normal, as well as gastro stuff, so the nausea and other symptoms seem to be cardio and neuro related.

    We have a local nuerologist, but I am wary of her because she very much advocates lifestyle changes and natural therapies. That is good and fine, but I have consistently had a track record of not responding to food/sleep/naturopath stuff. The last time I saw her (for POTS symptoms but pre-diagnosis) she took me off my meds and put me on an elimination diet. When I didn't respond favorably to either of these she basically told me that she was unable to help me further.

  16. Don't be alarmed if your son doesn't respond at all to the salt tabs and water. Many, many of us don't, or only respond to increasing fluids and salt in combination with a medication like Florinef that helps the body retain more of what we take in. I had horrible dizziness and fainting until we found the right combinations of medications for me and I am still trying to control some of my symptoms.

    Also, there are many, many people on the site and other dysautonomia/POTS sites that have had great results with removing allergens from their diets. I have a family member myself that did not have POTS but a severe form of asthma that had great luck with this approach. However, it doesn't work for all people. I definitely wouldn't try to remove the milk from your son's diet until you could safely replace it with something else he will drink that has similar or better nutrition and you might want to do it gradually. A non-dairy product similar to Ensure would at least make sure that your son is getting the nutrients he needs if you are going to test the milk theory out. He could supplement his fluids with gatorade or something similar.

    My personal response to eliminating foods/potential allergens was not a good one. I did a standard (but very thorough) elimination diet and found out I am allergic to . . . .no foods! Just as I had suspected, but I had docs and other suffers insist. I am allergic to several medications and preservatives. I have had to switch to organic milk because of hormones and additives bothering my stomach, but on organic milk I am fine. Anyway, eating very clean like elimination diets tend to force you to do may make him very irritable if you can ever get him to the point he is eating enough regularly to do so--- even after the supposed "withdrawal/cravings" period I could not eat enough to have energy when eating clean (eating an extra 1,000 calories a day and loosing weight I didn't have to lose)---- I was a teen at the time and even after months of being off of it my body still craved the sugar. As soon as I started eating processed grains and sugars in small amounts again I felt great (still POTSY, which never went away, but no longer like a complete zombie). I think this is a fairly common phenomenon amongst teenagers, especially boys-- teens, especially with poor/delayed digestion sometimes don't have time to convert more complex foods into fuel before they need them (based on male family members and also the wrestlers that I used to work with).

    I too had high cortisol levels on tests at times and had a very minor pituitary lesion all which added up to nothing.

    When you say your son can only sit/stand for 30 minutes a day, what do you mean by that? Does he get feeling ill after that time or is he passing out/having a hr in the 140s? When he is up is he sitting still or is he moving?

  17. Hey everyone,

    I have been diagnosed with POTS for about a year and a half now, but have had it for close to four years. In august of this past year (2010) I was able to get into a local cardiologist that had some knowledge of POTS. For the most part he has been great. He is the best cardiologist for hundreds of miles. He put me on metroporol, which helped some with the heart rate and then started me exercising. We tried florinef, but I had a bad allergic reaction to it. We switched to midodrene instead and that has made a big difference in my constant dizziness and the passing out.

    I still really struggle with the dizziness and breathlessness when standing or when walking, the evening chest pain, the brain fog, nausea from the time I wake up until late afternoon, and now bone-crushing fatigue. The last one has increased on the medications.

    I told him all this at our last appointment, along with the fact the midodrene had made some positive gains. He told me to come back in six months unless something else changes. Just the week before he had been concerned that I might have moved into CHF.

    Where do I go from here? I still can't get through a day. This is my last semester of school and to graduate with my degree I have to spend two months working at an internship this summer. I go to class and work out per docs orders, and do a little schoolwork. I'm always behind and I'm not cooking, cleaning, shopping, nada. Let alone having a social life or working. And, I feel like death warmed over all the time. Does my quality of life mean nothing?

  18. I have no science to back this up, just my experience with POTS. I do not have EDS.

    When I first got POTS I was very active and very muscular. I continued to do the same activities and be equally active (I had no idea that the reason I was feeling so crummy was because of HR, blood pressure, heart stuff at all-- I thought I was fainting because of pain). However, out of nowhere my muscle mass dropped dramatically for no apparent reason, especially in my upper body/arms. My strength decreased too, despite continuing to do the lifting I was already doing (I was rock climbing too!). I had POTS for over a year before I had any reduction in activity.

    Now that I have been working out and am active again I have noticed something odd. When lifting weights or doing anything else, I don't get sore-- there is no pushing though the burn. I instantly go from able to complete the reps fairly easily to being DONE and not being able to finish lifting a weight in the time period of one rep. I have also noticed that when I have high heart rate/dizziness/other symptoms I am less able to do anything involving muscular strength. On my really good days I can still pick up the 100 pound arthritic dog with ease or open a tight jar lid. On bad days the dog ends up on top of me squishing me and licking my face and the still closed jar.

  19. I live at 6,800 feet, but spent the first 10 years of my life at 9,200 feet. Although we moved to a lower altitude, I never had a problem re-acclimating to the higher altitude until POTS. Much of my family still lives at 9,200 ft. The Olympic cyclists and runners actually train on the road outside my grandmother's house. Until POTS I could visit family and run miles at the altitude with no problem.

    Post-POTS visiting family is miserable. I get more dizzy and nauseated and am dragging. I just want to lay down at all times, get cold way easier than normal, and usually spend a good deal of my time sleeping. I never nap irl, so that is unusual for me. I also have shortness of breath without exertion, chest pain, and migraines. I also don't acclimate-- I can stay for two weeks and still be miserable.

    When I moved from New Mexico (4,000 ft) to Colorado I had a milder version of the same. I have acclimated some in the 9 months I have been back, but I still have worse symptoms than I did prior to moving.

  20. Metoprolol ER here! I take 50 MG. Between that and exercise have lowered my HR by 30-40 bpm from 120-130 to 90-110 sitting/resting(the first 20-30 happened on 25 mg). I still have higher heart rates when standing, but they improved too. Prior to metoprolol I never had a heart rate under 100bpm after I sat up in bed for the day. Midodrene has lowered it an additional 10-20 bpm. I did have a real small 1 time weight gain with it (between 3-5 pounds). Other than that, no problems.

  21. Uh, not to scare you, but I guess it depends on how good your insurance is. I had what I thought was decent insurance (state employee insurance, can't remember if it was Blue Cross at the time or not, we have had to switch every year for 5 years because of the state budget cuts)we pre-authorized everything and still the insurance came back and tried to fight us on everything we had done. We paid hundreds of dollars of copays up front only to turn around months later (after our insurance had changed for the year) and receive highly inflated bills the insurance refused to pay. We fought them for months about it, but two years post-Mayo I am still paying off my balance. On the good side, the Mayo has a really reasonable payment plan where you can pay as little as 50 bucks a month toward your balance.

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