blackbirdsings

Nina, That exam sounds exhausting! I used to have so much trouble finishing when I knew what I wanted to say but my hand was too tired to continue. Chocolate sounds like a super reward! With the antibiotic are you taking pro-biotics? You probably are, but I thought I would just add that. I had trouble with them in the past, but my doctor has me taking a kind that I dissolve in fruit juice! I take it twice a day, and it goes down easily with no taste. My body isn't getting as sick from food since I have been doing this. Feel better soon!

Sorry, you had such a rough day with the faints. I have had to extend courses and wouldn't have been able to complete them if that hadn't been an option. Get it in writing if you do that...I had a professor try to flunk me because I passed out, than got a high temp and couldn't get out of bed! Despite straight A's and not missing a class before this, I had to go to the Dean. Insane. Anyhow, I did VERY poorly on Florinef and it was a nightmare for me. I passed out ALL day on it and had additional side effects. Even on it for months, different doses etc, I kept passing out, and we tried it on different occasions. Each time was really bad for me and I kept getting worse. I did have additional problems, not just increased fainting. I agree that its worth the try to continue on it and hopefully it will build up and work well for you. I really hope the florineft works for you, but did want to add that its not always the best med for all of us. Good luck!!

I have been going through the same thing with doctors writing incorrect stuff in my chart. It baffles me...I say something is wrong and have witnesses, yet in the chart they say it has gone away and I am all better. When it comes to the narcotics, we have had the same problem. I think its more about them covering their backs than taking care of us. There is a really good article by the AARP online that really explains pain, and the issues surrounding those meds. Write a letter the office manager complaining and you can have you letter added into your chart and your chart amended. Sorry, this happened to you too. Its so frustrating, especially when we already feel so bad and think for once we have a decent dr.

Emily, I'm glad the information was of help to you! I will send you a PM so you can get in touch with me. I have several books with "hip" patterns and I just got a pattern book to go with a new yarn. Very cute hats and sweaters. I need to finish the hat so I can start the sweater! My mother is HUGE knitter and knits when she is stressed. So that is ALOT of the time with me being so sick lately. She is even knitting a sweater I started but felt too bad to finish for me! I am so amazed with that, and she nearly finished it in two days. It takes me weeks, because after a few rows I am too out of it lately to remember what to do. On circular needles. Hold the stiches on the straight needle in your left hand and the new circular needle in your right hand. Simply knit the stiches onto the new needle (circular!) so you do not have to transfer stiches by slipping them over. Than just flip your piece around and continue knitting and pearling as you had done on the straight needles. It is much easier to do it this way. You will not join the yarn or have to worry about that. It is just like working on straight needles. If you are ever making a hat or other project that asks you to join the stiches, it is its own technique that I mess up alot...what you do is cast on the stiches and than you join them into a circle. I know that might not make alot of sense but you shouldn't worry about your piece becoming circular. If you are able to get out at all to a knitting shop, try to go when they aren't really busy. My mother took me to one several weeks ago and I felt horrible and couldn't walk due to some medical tests. I ended up at table in the center of the room with my legs propped up. The ladies in the store know I am sick and faint, so they just asked what I might want to work on. Than my mother and them brought me tons of patterns and yarns till I found something I liked. They even brought me ten different colors of one yarn so I could choose, and said they didn't mind getting everything out for me and putting it back! If the store hadn't done that for me I would have sat and fussed the entire time and left really upset that I wasn't well enough to get up and around to select yarns, etc. So if there is a cool knitting shop near you, if might be good to try to go every few months and stock up on yarn. Lately I've been ordering alot of stuff online or only going to stores where I know I can sit and be brought stuff, otherwise its just too tough on me these days.

Emily, I amazingly just found the link to the knitting needles very easily. I rarely knit on straight needles because I get tired and they are a bit of a pain. Circulars are so easy to use, light, travel well, and easy to use in bed or on a sofa. I thought the idea of this kit was silly and wouldn't be that great, but as soon as I used it I was hooked. I started knitting SO much more after I got this kit. I did get a pair of gorgeous mahogony needles-straight, but have yet to finish the project because I find them a bit cumbersome. They are pretty to look at though... The needles make knitting go fast but they aren't the turbo type. The turbo needles that are metal tend to be too slippery and my hands get too sore too fast. Here is the link...there is also a page that lists all the stores you can get them from all over the nation. If you aren't able to get out, call one of the stores and they should be able to send the stuff to you. We no longer have a knitting shop near us, so if we need something and can't get to the store, we call stores we like all over the nation and they send us stuff. Most send it overnight or within a day, so there isn't much of a wait! www.knitdenise.com What yarns are you using to make a lapblanket? I love some of the ones that are in stores from chunky yarns. I was worried about how much it would cost using some of the yarns I like to make a blanket like that...I may go ahead and do it, so I can have something to do, and I'm cold most of the time. We went to the outdoor store to buy me more warm socks and I asked if they had something thicker and warmer, and the salesguy flipped out....appearently I am in the warmest sock, and he was blown away by how cold I get. We had to explain a little but they still had their jaws dropped. This is a bit off topic, but knitting certainly is great to do on POTsy days and feel like you have accomplished something!

I knit with my mothers knitting group and guild when I am able to, and they have several charity projects each year. We did chemo caps several years ago and whenever I knit a hat that turns out the wrong size for me, I sent it to the chemo patients. There is a yarn...I think Chenchilla..I know I spelled that very wrong. Anyhow, we were told the chemo patients really like that yarn. Its very soft and almost silky and gently on them. Comes in pretty colors too, and knits up fast. It is a little slipper so I suggest wooden needles or plastic ones...I have a kit of needles my mother picked up for me. I will have to post the name. They come in a little "book" and you open it and you have over ten different needle sizes and the different thingies that go between the needles. Brain fog. Anyhow, you than have circular needles. I adore my kit and its great because it fits so easily in my knitting bag and I always have needles handy. I think they are "Denise" needles. Let me know if you want more info and I will get it. We also knit clothes for the premies, because nothing fits them when they are born so early. Little hats, sweaters and booties! Very cute. There are usually guidelines on what yarns we can use. For babies we use yarn that can be put in the wash and isn't scratchy. I didn't know so many of us knit! Certainly something we can do in POTsy moments laying down. I finished knitting a sweater and have been too out of it to sew it together correctly...should really try to finish that since its getting chilly out!

I went to a neurologist for a while about migraines. He thought females fainted because we are week...yea, I no longer go there. Anyhow, we worked out a plan for mine and if my migraine meds didn't get rid of the migraine within a certain amount of doses, I had to go to the ER for IV fluids and medicine. Sometimes they had me come into the office and would do the IV there and give me a different medicine to take for several days to keep it from coming back and help with the pain. Migraine meds make me feel funny for days, but you have to do it...the hydrocodone works well for me and doesn't leave me with bad side effects for days. Some of the migraine meds do not work for me. I did the depakot for years at first and it helped but I still had break through migraines, but at least it wasn't everday. Good luck! If it gets bad the ER might be a good option...I detest going, but for migraines they are usually good.

Epi-Pens save lifes and are VERY easy to use and do not really hurt. The idea of putting a needle into the leg can be daunting. Trust me, if you are in anaphylaxis you will use it and find it to be easy to use AND make sure you HOLD IT IN for the full ten seconds at least to make sure you get as much of the epi as you can. It will save your life and at least hold you over till you get to the ER within a few minutes. There is no comparison to POTS and anaphylaxis. I know this might not make sense, but you will know if you are in anaphylaxis. For me I feel an overwhelming sense of doom, am unable to breath combined with other symptoms of anaphylaxis. You have to stay calm as you can, use the epi and get the ER. I'm not sure if that helps too much...Do make sure you take your Epi-Pen everywhere with you and make sure all of the people that are normally around you are aware of your allergy, and what to do if you have a reaction and are unable or unconscious and need them to adminster the medicine for you.

Your sleep problems sound related to the tackycardia you mentioned on the other thread. In that case I don't think biofeedback will solve the problem BUT I agree with the others on here...Biofeedback is really worth learning. I would describe it as meditation to an extent...you learn to go to your happy place, relax your body so you can better control a situation. I'm not sure if that makes sense, but it was taught to me by a coach years ago and has been a tremendous help to me in all aspects of my life. You can also think of it as positive visualization. There are some books out that do an okay job, but its easier to learn with somebody helping you along. If you have some favorite music, try laying down in a comfy spot, having the room a cool temperature, dimmed lights, etc....lay down and listen to the music and really focus on just going into the music, controlling your breathing and letting your mind drift away. I use biofeedback to keep myself from fainting (most of the time ) I know that when my body starts to feel pre-syncope or go right into it, I need to sqeeze my muscles really tightly, and I use keywords in my head to help control the situation. There are other times when I just faint and it can be spooky coming back from a faint, especially when you aren't able to really hear or see again, that being able to breathe through the situation really helps me. NIH did a study on hypnosis and relating it to orthostatic intolerance. I did the study and forget all the details, but it was based on teaching hypnosis, and than monitoring a person again under hypnosis to see if they could control their blood pressure to a point. Search for the root of the problem...I don't think your sleep troubles sound mental, more like a physical problem. Totally go learn biofeedback...its alot like meditation, but is more guided and is a great help.

Jenn will be able to help you as well as Finn. Go join Lymenet...their forum is great for lyme folks. They have a section where you can post that you are looking for a LLMD, and somebody will send you a private message with information the same or next day. Ask everybody! Seriously, it's hard to get a LLMD and I am on the wait list for a top one and might not be able to get in till next year. I have an appointment next week with one that several people speak highly of. I found out about them from a friend of a friend that has lyme...Good luck in your search!

Emily-Yea! I am glad you found my post helpful to you. I know you have been having a really tough year too. All of the POTS specialists say I am just not like the others, that I do better and am able to do more than most BUT only when I don't have all the odd symptoms going on and they just don't know what it is. They just say its NOT dysautonomia. You described me so well on many days...being pale, not being able to get up, too much effort to watch tv or do anything. Than I will have a few "decent" days and back to the days that feel like you are in a very hot place. You can email me if you have questions or need help with some of the research. I have found some articles etc and the website the others mentioned helps. I can get you the links or the articles. I have some time each day where I am energized enough to work on the laptop and do the research etc. Everybody keeps telling me to get to a Lyme literate doctor as soon as possible and to search for the right combinations of meds to treat this. Also, to not give up and hang in there! You sound like you have a good medical team that will work with you. I have only heard of a few really good lyme doctors. I have a short list of them, and we are trying to get me into one of the clinics. Three month wait! Ahhhhhh.... Ethansmom-I am impressed you are able to do so much, though I am sure it is hard for you. Just taking care of myself is rough, and I am sure it is hard to take care of two little ones. I think there is something about checking the children at some point, but am not sure where I read that. There are several different antibiotics that kill the spiro(I need to learn how to spell the name!). Doxcyline is one of them, but there are several others. I am learning they often need to be used in combinations, of varying doses, alternating etc,. to find what works. I'm not sure if I understand your question about me saying it makes me the sickets. I'll try to answer, and if I tell you something else, just ask again! I can only begin to compare this to having the worst case of flu imaginable, broken bones, chills, temperatures, upset stomachs, etc. all combined in one that doesn't go away. Everything seems to be extreme. The chills are so bad, it takes tons of warm clothes, covers, heating pads, etc. to help bring me back, and this happens everyday, just about the same time. Everything is extreme, so its the worst. Does that make sense? And than if I faint, its a really hard one, and hard to recover from. Some of the medicines in treating Lyme can cause you to feel better, and at certain time periods you won't feel well and everything will flair again. Can you ask your question again? I don't think I am answering correctly, sorry. My POTS got better within days, and than I had a little over a day where it was bad. Now I am back to it being pretty decent and not too bad to control. I haven't even had a full week of treatment. My body responds pretty fast, and there are other positive changes. From better color, more energy, less brain foggy, pain not always as severe, and being able to eat. Before I started on the med. my POTS was really bad, and I didn't know why. I have a new doctor that is great, and I have the feeling I need to bring in my NIH papers etc and say okay, things are doing better...I avoided getting into it too much before, but now I realize its important they know how much its helping. I was blacking out sitting up in bed, so than I would get recovered from that, sit on the edge of the bed and recover, get up and hit the floor...though I prefer to say at times the floor hit me! Bad humor...I ran really hard into a doorknob and door a few weeks ago, trying to get to my bed. I thought I would miss the doorframe (those hurt if you walk into them!) so I had my arm out, but was too disoriented. Should have just gotten on the floor instead of trying to walk when I'm about to pass out. I usually do a nice pre-sync and can sit back down etc. I was getting the really doozy blackouts, where you stand and just know your going to faint regardless, and I did. Than I would get a few days where it wasn't so bad and go back to this. I now think this can be linked to the cycle of the life of Spiro. Also, months ago I had surgery and they had to give me alot of fluids that were milky looking-the doctor said it was just because I was small and wasn't phased by the POTS. I did feel better from the extra IV fluids and wasn't so thirsty for about a week...though I was on bed rest for most of that week. Treatment...I am still learning about this and think it is alot like POTS treatment. ALOT Of trial and error to find what works and will kill the suckers. It can a month of antibiotics if the case is mild and caught soon enough, or it can be 4-6months, or it can be years. I think it varies on the severity of symptoms. They can also do a high dose and get things in control and than do a maintence dose to keep it from flairing...it seems to really vary from person to person. I am also finding out there are IVs that are sometimes needed and shots. I don't know much about those at this point. There was one website somebody told me...I think International Lyme and they had alot of good info. Emily-I was concerned this was getting a bit off-topic, but am glad its here. I am amazed at how many of us on here have Lyme and POTS. This is really loooong now...if I didn't make sense on something just ask me again!

I'm going to reply in reverse since I can remember better...if that makes sense. Emily-POTS specialists said everything on me is fine, but something is causing me to get out of whack and syncope. No doctor has ever mention Lyme as a cause of NMH to me. I discovered that in journal articles, and related lyme research. I would like to say I was horrified that no doctor had brought this up before, but alas with all the doozies I've had I'm not too shocked...though it seems like people would have the brains to figure that out. I refuse to have another tilt...they are positive, we can just stand me up and watch the numbers drop and the tackycardia. The politics of Lyme and how so much is unknown, doctors aren't too up on it, and that the treatment goes against so much of what they say shouldn't be done. Such as the long term antibiotics..no one does not clear everything up and I am finding it can take multiple combos. Not gotten to that point on me, but I think its fast approaching. I am not pleased that politics or kickbacks from pharmacutical companys influence treatment of persons with a chronic condition. I was put on one medicine, when I had requested a different one...well I kept going, I know that name from somewhere. Of course I do...I have seen adds for it on tv and in magazines!! Your being so tired and getting so pale sounds alot like me. Due to how ill I have become and no other tests have shown anything, the doctor agreed to starting lyme treatment to see what happens, since it had helped so much before (all symptoms went away!). So far it is helping. SO many of my bizarre symptoms and things my body have been doing, I am now finding are very normal and are major pointers to Lyme. I am finding many issues arising, that I can tell only a specialist is going to be able to assist in...such as right combination of medicines, doses, and making sure I am on them long enough (we think I have had this for years, so I am now chronic lyme). Doctors keep saying people shouldn't be on an antibiotic for very long and to save them for major things. Well, I am at a "major thing" and it is making me better. Another problem I am facing is horrible pain that is very specific and worse than anything else I have ever experienced. Advil does not resolve my pain or even lessen it, and I'm not able to take anything less hardcore than some of the major things. Doctors don't seem to understand the Lyme pain, and are trying to get me off the pain meds. I am hearing this is normal for many lyme patients to go through. I know somebody with Lyme that takes far "heavier" meds and much more than me, and has for years. For them that is the only their pain can be controlled and they can even begin to move around. Lots of frustrations with geetting treated. You tell a doctor you have POTS and that is alot...than you get into saying Lyme and they really think you are nuts. I have had doctors say it is all POTS and I sit there going, no, your misinformed and need to contact somebody at NIH, etc. because you are saying things that are not true. My POTS is that when I change positions my blood pressure lowers and I pass out or pre-syncope. From that I might get really pale, and after tons of fainting in hot weather I am tired, but bounce back very quickly. I have had really controlled POTS and have been able to be fairly "normal" until I started having all of these odd symptoms. Sometimes showering was hard, but with fluids and extra salt I was pretty good. I do have a swingy tag so when I was driving (not done this in nearly a year) if it was hot out, I could park by the entrance and do okay. One faint in a parking lot, when people kept on going and left me there...the doctor made sure I had the tag and its been a huge help. So there is ALOT that isn't POTS for me, or even most people that is Lyme. Knowing what my "norm" is, I can differentiate alot of what is POTS and what is really abnormal. My family and friends can also tell the difference. What is interesting, is that on the antibiotic, my blood pressure improves. Than I go back to a low-medium pots day, with some flares, BUT its much less severe. For me, we can see a direct connection, and that seems to go further into the Lyme illness. Tonight I am having a flair, but I think it is the spiro. in my body fighting. Had bizarre electrical charges around where my pain is, than I got a temperature and sweaty, and swelled more. Than some chills, and now I am back to just hurting but don't have anything to take for it, so I am awake trying to distract myself. Hence a long post! I would really pursue the Lyme, but the biggest thing I am finding is going to a Lyme Specialist. Otherwise, it might be a waste and just add in frustration. It is worth ruling out and in the process maybe the specialist can come up with something to better help you. JENN-I sent you an email :-) It is scary to know that there are so many different stands of Lyme, than even more of the co-infections. That has got to be incredibly hard to detect those in a person, with so many different ones, and not everybody making antigens-eek! OMG on Lyme being able to change DNA. That sounds like something out of a Sci-Fi flick, instead its real :-( Now I understand more why it can take several different antibiotics at a time, at varrying doses. I read about one drug that is toxic and can be given to patients in a large dose, but only a certain number of times a week. Something about it killing of the spiro. with the cycle of how long they live. I had some improved days and today seems to be herx...symptoms I thought had gone away (we can be optimistic!) are back and really flaring ALOT tonight. Should I avoid sugar when I get sweet cravings? I find I get those cravings which I hadn't had ever before during some of these episodes...I was wondering if that just feeds the spiro? I was thinking I should add yogurt into my diet each day. I used to eat alot, but haven't in some time...best to prevent yeast overgrowth as much as possible. I am SO excited for you to have gone into remission on the right meds!!! That has got to be an incredible feeling :-) bamgirl: I will email you tomorrow. I am interested in knowing more about your treatment and what it is like at the clinic in NC. I am now on a waiting list there, but really need to be seen far sooner. I have heard really good things about the clinic and it sounds like the place to go, despite it being a bit of a trip. I've said that POTS is enough to deal with, without adding Lyme into the picture. They sure are a slammy, because if a doctor doesn't know what to do they will blaim it on the POTS and what could we possible know about our own bodies?!? Uggghhh...that attitude will change at some point, I hope... I want to get in touch with my dysautonomia specialist about this and bring up the lyme. I don't know if they didn't say anything for whatever reason, but lyme seems to be a huge cause of NMH in so many people. If testing them and treating them would improve or make the syncope go away, I think doctors should really be making the effort to do that for patients. Thank you to all for the info. and support!!

I will email both of you, thank you for the support!!! This has been a really rough year. Whenever stuff flairs, I faint worse, and just sitting up in bed (blacking out) is tough...I keep having really bad days where I'm not able to get out of bed, but to go to the bathroom and I can hardly hold my head up. After ruling everything out, and that my symptoms all went away nearly a year ago, the doctor agreed to give it a try. I think I am going to need many months of the treatment with additional meds, but at least I am getting some relief. For the first time in months, I was able to shower, dress, go for a car ride, do errands and even go in stores today. That is a HUGE improvement. Just a week ago, a short car ride wore me out and I wasn't able to go in stores. Funny thing is even NIH said my POTS was caused by something else, but they didnt know what. I now believe it to be the Lyme and other co-infections. I've been blacking out less on the antibiotic, though some stuff is still hard...still early in treatment. I'm also discovering herx, and feeling really coherant and pretty good, and than suddenly I have tons of symptoms and feel horrible. I am starting to see a pattern in this. I am now on the waiting list for the doctor in NC. I know somebody that went there and they were VERY happy with him and are still going there. We have asked my regular doctor to do more bloodwork and have it sent to one of the labs that is used. I have yet to see any bloodwork come back related to Lyme that actually shows the bars. The doctors don't even know how many bars I have. We think I have had this for at least four years...tons of tick oxposure but also some spider bites I had bad reactions to, horrible rashes etc. My understanding is that in europe they have shown you can get it through those, mosquitos, flys...though it is rare. In the US they seem to think it is very rare to not possible but I wonder... I will be in touch...lyme is very confusing and not a nice thing to have to say the least!

I have just started treatment for Lyme and am on a medicine that covers all the spiro...(not sure how to spell) but the stuff that makes you so sick. I have come across several articles saying it can acutally caused NMH and that some doctors like to do Tilts on patients and put them on medicine, and tell them about extra salt, etc. I found that connection very interesting. This is the best forum I have come across for POTS and just in general. I realize there are a few people on here with Lyme, and have helped me find some good websites. I was wondering if there is a specific Lyme forum people know of, and any articles that might help me. Finding there is SO much more to Lyme than you hear most of the time. All my odd symptoms actually mean something! Trying to learn as much as I can, until I can get to the Lyme specialist. Especially things that can help me until I get there. Nausua is becoming a bigger problem for me lately. I know alot of you all have that too. I am going bonkers for a hard candy called Gin-Gins. They are a ginger candy type thing, but not too sweet, and they actually help settle the tummy (at least for me). You can get them at the heath grocery stores or order them from the company online. Wanted to share that! I have also found as misunderstood Dysautonomia is...Lyme is just about as misunderstood.

I had somebody tell me I was going to get "really fat" from drinking Gatorade. That's pretty nuts if you think about it...If you don't drink sodas, fruit juice and other stuff like that AND your body really needs the electrolytes, the chances of you gaining weight from it are pretty slim. You can always cut something else out of your diet or water it down like Steph does. I sometimes take fizzy water and put some fruit juice in it, just to flavor it. Than you cut down on some of the calories and high sugar intake and have a nice drink. Alot of the things that you do when you have POTS are considered "bad" but they are actually really good for us...though it varies from person to person. Eating tons of salt and alot of the other stuff we do, would be bad for most...my family prefers that if I cook for everybody, I season it normally, and than we can add salt to things as needed. Some family members need a low sodium diet, I need a high sodium diet. OH, I should probably put this in a new post but I have been using sea salt in place of table salt and find it makes me feel better. A friend of mine told me to try this...there is something about how it balances the alkalines in your body...either way, it helps me! Somebody once said to me, "Don't you think all of this fainting is really unhealthy? You should really see about doing something about it and just stop fainting!" DUH!!! If only it were that easy...

Not only do I get really cold in the winter but I am really thin so I have some extra trouble staying warm on my own. Going around cold alot of the time will make you feel worse...when I finally got warm, I felt alot better! I go to a really good outdoor stoor...the type where hard core hikers, mountain climbers, skiiers etc. go. There is a pair of thermal underwear I use under my pants and sometimes even sleep in them. They wick away moisture. I had to try on several different brands to get one that fit me correctly...now we keep the name and when I need more they do a special order...I have had one pair for two winters and they are still great. I also have various thermal tops. When they said thermal tops I went Yuck! because I am so into fashion. There are some really fashionable thermal tops out these days! Don't buy the cheap ones, spend the money for at least one or two really good ones and you will be really glad you did. I layer mine and also put regular tops over them. Socks...If you need the name I will look. I get socks from the same store and they are SO warm, I end up using them year around. Even indoors with the air conditioning going they are a saver for me. In winter I wear them with a sock liner underneath. Made especially to keep people warm when they are in below freezing temps. Shoes...Merrils make some great slide on type shoes that are water proof, insultated, warm, and hold up great in all weather. They have a wide variety of colors and style, including boots. I just like the slide on one because I don't have to bend over and pre-sync to get them on! Gloves...I have waterproof ones and add special glove liners to them. Hand warmers and foot warmers...The stores buy me an extra box and I use them whenever I need them especially in winter. The ones that you open the plastic thing and they warm up when air hits them. Most of the brands are good but some are better than others. Some of this really does cost some money, but for us it was really worth it to have me warm and happy. Also the stuff wears really well and you can use it over and over and over again. Oh, a good hat to keep your head warm. I have one lined in fleece that covers my ears, and the outerpart in a knit wool blend. If you get a really good store they will help you out, and give you alot of options. A good fleece jacket, and a waterproof/wind resistent shell is very important too. I've had mine for many, many years, and they still look new, because they wear so well. Hope this helps!!!

What are systematic antifungals?

12stringguitar...do you play? I think you might find a book over on www.NDRF.org (somebody correct me if thats the wrong ending) helpful. It's is the website for The National Dysautonomia Research Foundation. They have a book on there that you can download for free written by some of the folks at NIH. Dr. Goldstein did alot of the book with somebody else and it explains about the sympathetic and parasympathetic systems work etc, and is done with pictures and analogies that really help break something down to easy terms. Not sure if you'd read that or not, but thought you would enjoy it. The causes of dysautonomia are very varied, as are the different types of dysautonomia.

With the gastro trouble and majorly upset stomachs what do you all take? Listed were Nexium and Prilosec...I've tried both of those and neither one helped me. I've been checked for acid reflex and told I don't have that. Just curious as to which ones help you all...Have a doctors appointment coming up with a new dr and have to go over this with him. Thanks!

Your symptoms might be from Claritin...I used to take that as a prescription years ago and passed out like crazy on it. Allegra does the same thing to me. I am having a hard time with allergies this weekend and fighting off an infection and am going to have to take some Sudafed. Which means I'll be passing out some more...ugghhhh...I can only take the allergy meds for a few days because they build up really fast in my body and make me VERY Potsy. I am also really small, so I know that makes a difference. I have a nasal spray that has an anti-histamine in it...It usually makes me really sleepy BUT on the good part of it is that it helps my allergies and doesn't bother my Pots. If you need the name, I will check for you. I was out of state and living somewhere for several months. The doctor put me on the nasal spray because it doesn't have any steroids in it (flonase and all of those do horrible things to me) and he didn't think it would mess with the Pots...he was correct. If a side effect is listed as rare I typically get them...sounds like alot of us do. Glad to hear you are getting some sleep finally! I am sure that is a huge relief to you and hopefully you will be feeling even better! My surgery went really well, and everybody took such good care of me and weren't phased by the POTS. One of the best medical experiences I have ever had...kinda sad that it was a surgery and the visits to doctors offices are traumatizing.

This is a great topic! I knit and I felt frustrated because I am an advanced knitter and wasn't able to use the tiny needles and focus on complex patterns. We went in a aknitting shop oneday where I could be on a sofa and relax. We found a chunky yarn, and I have knit a sweater on size 15 needles! The pattern was very simple and won't go out of style. I am working on another sweater, a scarf (small needles but I just knit it) and a few other things. I like to make felted objects. You need a yarn that is all wool, and once it is knitted you put it in the washer and it shrinks down and becomes solid and you don't see stiches. You can make purses, hats, bedroom slippers, and even cute flowers with this process. I also like doing this when I feel bad because if I make a mistake I don't have to correct it most of the time, because you won't see the goof in the finished project!! I find circular needles better to work on because they are easier for me to hold and travel better. I use TONS of pillows behind me in bed to prop me up, and another pillow or so on my lap or beside me. Sometimes a bed tray works too. I also use a laptop instead of a desktop. I get exhausted using a desktop and like that I can position myself without strain and use a laptop in bed. I had to fiddle around some to find the right way to angle it, but now I've got it down. I too love coloring! A family member picked me up a silly kids coloring book and crayons at the grocery store and I love it!! Simple but very amusing for me, and it sounds like you all enjoy it too. I have been painting some on days I feel better but not recently. We put some blankets on the floor and I painted on the floor pretty much laying on my side. I watch alot of DVDs when I feel bad, since its low effort and can be done laying down. I've done some beading, but as it was pointed out can get really expensive. If you just look, you can keep the price down though. Knitting is the same way, but now Michael's and a few other craft stores are carrying very good quality yarns, and the fur yarns for scarfs. Well, I hope this helps somebody!

Hi Emily, I know what its like to stop that med. Not fun! It helped me for one day and after that I was hyper, I would faint and just get up and keep going and didn't really shut off. It got to the point I was taken off of the med because it wasn't helping, I was so wired all the time and not sleeping. I think it took me a week or so to go back to myself...I remember feeling far worse when I stopped taking it before I felt better. I hope that is of some help...but everything you are going through sounds really normal but I would call your doctor tomorrow if your still having trouble to see if there is anything else you can do that might help.

Thank you all for the suggestions. Today went well and they were as gentle as they could be during the exam. It has been decided that I have to come back tomorrow to see another doctor and decide how to proceed. Without the POTS they are concerned about doing anything in office. The staff said they haven't seen a place like this before and do not know what to even call it other than a cyst. Tomorrow the doctor will decide if it can be done in office but they are leaning towards a hospital right now, and said fluids etc would be done. Better to be on the safe side, but it's got to be dealt with. Causing alot of discomfort, temperature etc. Which of course doesn't help the POTs. I'll let you know what happens.

Hi everybody, I need some information to take with me to the doctors office. I know I need to look back through the search feature on surgery too...So many folks on here have had surgery lately, I thought I should just post. I have a cyst/growth that is rather big in size in a gyno related area. I have to go the gyno about it being removed and know sometimes it is done in office, and another person said I may have to go to the hospital. My understanding is places can be numbed and removed, other times you are put on an IV if they are more serious. I think that may be the case for me, because I am running a temperature with this, VERY enlarged lymphs, and the list goes on. Even been getting dehydrated lately with the temp and struggle to keep up on liquids. With my POTS I know some consideration will be needed to treat me. How much IV fluids should I ask to prior and following? Are there any other considerations or things that should be done to help me get through this well? Somebody mentioned to me that they had to be hospitalized for a place like this because the place was so infected and making them sick. I just want to go into the doctors office very prepared and with print outs backing up my requests. Any and all ideas are welcome! Thank you in advance. Oh, if any of you had this before, was there anything you could do if the cyst bothered you? Doctor examined me at the end of the week and jammed a speculum against it so many times I am still in great discomfort there and do not know how to help it.

Congratulations!! What a wonderful day for you and how great you must be feeling with your new freedom!!! Happy for you :-)