Ash

Have fun sonyassmith12! It's funny because I am actually going from high elevation (I live in Co at 6700 elevation) and am flying to Florida on Wednesday to see my grandparents and am wondering if I won't notice a difference in going to sea level (I lived in PA for 18yrs until I moved out here but that was prior to POTS). Jackson hole is a beautiful area, I haven't skied since moving out here (too expensive! Although I live 45mins from Ski resort) but I do snowmobile (also pricey,but the hubby is into it so its what we do.lol ) and although it can be a workout I would highly recommend trying it if you can, I can't ride like I could before pots but I still go and even if I am having not a great day I can stay on the trails, stop often, and we have actually gotten into stopping and building a fire and roasting hotdogs and I can hang out by the fire while everyone else goes and hill climbs and plays in the meadows. I would try skiing, even for a half day or one run, just to say you did it. Also remember to drink a lot of water, wear sunscreen when outside as you will burn much easier then when at sea level, I would take the first 24 hours easier if you can to allow your body to adjust to the difference in oxygen levels, and if you drink alcohol they say to try and avoid drinking for 24 hours as it also contributes to dehydration. Watch for signs of altitude sickness or acute mountain sickness, a lot of the symptoms are very similar to what we deal with every day, so just be aware of your body and how you feel. Have fun and keep us updated. : )

Thanks Azmusiclover for the information! May I ask what they found with your gallbladder? Mine I didn't have any gallstones it was just scar tissue and not working properly, I wonder if that means something. I have lost a lot of weight this last year in the beginning I was trying and went on weight watchers, but once I reached my goal weigh (135) I stopped following the program and still continued to loose (my lowest was 114) my starting weight before my gallbladder coming out was 159. So although I am happy with the weight I have lost it has been unintentional for a bit of it which has been a little scary (especially when I am eating foods that should be having me gain/maintain weight, I.e. peanut butter). That's crazy that you had only digested 59% ugg I am sure you just felt horrible. I will have to check into my insurance and see, but I like the idea of the food journey I know I had kept one for a little while last year but slacked a lot it does however, sound like I eat pretty similar to how you are, so hopefully, even if I can't get in with a GI doctor I can self manage. And yes lots of water and Gatorade I found if I cheat and even drink 1 dr pepper I will be hurting or Starbucks (which is sad.lol) .

I want you too know this post inspired me to sign up for a tough mudder 5k with my friends. It is 3.1 miles with 10 obstacles...I completely plan on walking the entire thing and will probably be in bed the entire next week. But I am going to do it and finish it! It was kinda funny though because I was telling my cardiologist about it and making sure I wouldn't have a heart attack or something from it, and he asked "you couldn't have picked something less involved" I told him no all my friends where signed up, he did state my friends didn't have POTs, and I told him as long as I don't die during it I am okay with spending the next 1-2 weeks in a bad flare, just to be able to go and do something I want to do and used to be able to do will be worth it....now time to start training, and considering just walking a couple laps around our house is a big ordeal I have a feeling it is a good thing I have till the end of June to build some endurance...maybe I should start practice crawling...but thanks for the inspiration I am a firm believer that we can't let PoTS keep us down, I know I personally don't feel any better then I did last year when I first got diagnosed but I do a lot more now, I just know that I am never gonna not be dizzy or have a fast heart rate and pushing through yes will most likely cause days where I can't get out of bed, but those few hours of "normal" doing things I enjoy are worth it and help me keep my sanity in this whole messed up and unfair ordeal.

Thanks Lel I would love to hear what you find out......Azmusiclover...may I ask how long have you been on the low fat/low fiber diet and how long till you noticed a difference in symptoms. I have been following a low fat/lower fiber diet for about a year (since having gallbladder out) and can't say I notice much difference other then if I do cheat and eat a heavy or higher fat meal I get more bloated and have to be in the bathroom quickly. Although it seems I can also eat the same thing every day for 3 days with no problems and then the 4th day it causes me to be in the loo or bloated to the point I look extremely pregnant and am very uncomfortable, or it "triggers" a "I can't go o the bathroom for a week type response". I did ask my cardiologist if I needed to see a GI dr and he didn't seem too concerned with it, just told me that was part of the dysautonomia and to try and avoid trigger foods....I wonder though if I could get an appt with a GI doctor without a referral and if so do you have any suggestions on questions to ask the dr....thanks for the reply and sorry everything is squished together I am on a iPad and cannot figure out how to make it so it keeps my paragraphs spaced when I post.

Sorry LMG I was thinking Midodrine or something (dang pots brain) your right. I just looked at the bottle and it said .1 2 x a day and I did .25 after a few days of trying .1....

I did a trial run for a month on the generic SR and love, love, loved it! So far it has been the only thing I noticed a difference with (I only stopped because we are TTC) but the OBGYN and cardiologist gave me the go ahead to get back on it until we get a positive Pg test and then we will go from there. I would take one dose at 7:30 and the other at 2:30 and it would boost my energy (the reason the dr wanted me to try it) originally the internist I saw for CFS (didn't know anything about POTs) was the one to prescribe it. I would still feel tired while on it but it was like it pushed me to still be able to do stuff (like I harnessed the jittery feeling) the reason the internist picked the SR is because I have severe insomnia and the hope was it would wear off before bedtime (which I did notice better sleep while on it...Maybe because I was more active during the day?) the one side effect I did notice while on it was it did decrease my appetite more than what it is normally and was more consistently nauseas after eating while on it, but I deal with those things on a pretty regular basis any way so it wasn't enough to make me stop taking it. Hope things are continuing to go better for you with taking it : )

I had the same reaction when I tried florinef...my BP which is usually low 70-80/40-50 and was hitting 180/114 standing, and was right up there when sitting. It also gave me the worst headache. Originally I tried .5mg per my Doctor and then after a couple days I dropped down to .2 and then stopped taking it, it was too scary for my BP going up that high (I am 24). After that ordeal I tried Midodrine which also raises my BP but not past the "safe" range although I still haven't decided if I like it or not yet (I really haven't taken it for a few weeks, as for me it seems my symptoms don't really change with or without medication which makes no sense to me and we are TTC so I don't want to be on them if i am not seeing huge improvement) I would talk to your doctor about it and see, there might be something out there that works for you. I know it can be hard, I know I really, really wanted florinef to work since it seems to help so many POTies.. oh I do notice however, I am one that if I push myself during the day my BP tends to get really high on its own, probably happens 1-5 x a month. So that may also be why it didn't work as well for me too.

I am sorry Tapapik : ( if it helps I don't have MCAS nor any symptoms indication I have it and I have severe GI issues and react badly to morphine (as well as most medications) when I was in the hospital last year they had to switch me off of morphine because I would also get a rash and severe headache whenever they would try and give it to me. So your not alone, think happy thoughts. our bodies are just so weird sometimes that it is always hard to know when it is something else or when it is "just" POTs. Let us know what you find out. : ) Ash

Check, check and check minus the not loosing weight for some reason I have been able to do that easier this past year. (Oh shingles too at age 10 took the doctors a few days to figure that was what i had cause of my age) I did also have my gallbladder out last year (took 12 days and 2 hospitals to figure it out) and it seemed like instead of getting better it has gotten worse..I also flip extremes though and can have gastric dumping? Where it seems about 5-30 mins after I eat I need to be in the bathroom now and everything I just ate comes out looking about the same (sorry gross I know) so it has me questioning if what I have could be classified as gastroparesis as I seems to differ occasionally, although I have noticed it too goes in spurts of being one way vrs the other way depending on the day, time, how the moon is aligned?!? sorry I am not much help, I haven't pursued it too much other then when I was in the hospital I was scoped entirely and nothing came up other then a hiatal hernia...so the internist I saw a few months later dx me with IBS which fits somewhat but not as neatly as gastroparesis or dumping syndrome or maybe treating the hernia....

Mine seems to get higher as the day goes on too. Initially it drops lowers then my AM reading but then once I get to a certain point it starts to climb. I have always assumed it was POTS related but am not sure why. I am going to go an see my cardiologist this Friday and was going to ask about checking my hormone levels as it is really the only blood test over the last 3 yrs I haven't had done...I will try and get a better answer out of him. He isn't a POTs specialist but at least knows a little about it. I am also going to ask about a small leaky valve he dx me with last year and said just to watch and no Tx was needed I am beginning to think maybe we could fix it and see if it helps? Insomnia is probably one of my top five worst symptoms and actually if I could pick just one to get rid of it may just make the final cut : ) I hope yours is being controlled some by medications, I tried ambien for a month and although it helped some it really only gave me a few good hours and then I would be up..although Benadryl doesn't completely knock me out it at least helps some and after two nights without having any I have finally realized how much...dang heart racing in the middle of the night, every little noise and feeling like I am spinning without moving , oh and having to pee every hour doesn't help much either take care lynnie

I also have this problem..I asked my cardiologist about it and although he didn't give me much answers in why it happened he just told me what numbers I need to try to stay within and when to go to the ER. Generally, my BP is 70-90/40-60 and anything higher or lower then that seems to affect me some. The first time it was really high, I remember telling my husband that my BP must be really low because I was tachy, dizzy, and had a terrible headache, so I was really surprised when I took my BP and it was in the 170/123 range with a hr of 130+ so I took 3 x a dose of the beta blocker I have and laid down and after a few hours it was down in the 120/80 range..it doesn't happen very often (maybe 1-5 x a month) but enough to scare me.. For me my doctor has wanted me to try taking midodrine to raise my BP to a higher range so I can take a beta blocker to put a cap on my hr without dropping my BP too low....I tried both for a week and didn't like they way I felt (plus we are TTC) so I am currently not taking any medication other then my nightly Benadryl which so far has been the only thing to help me sleep. I do however, take a BB if my BP is getting too close to the "I need to go to the ER range" my doctor set for me...one thing I have found though is when I am active initially my BP drops extremely low and if I push through it raises and gets high or even too high, and if I see high numbers at night before going to bed it almost always means I am in for a really bad day come morning, I am not sure why it indicates/causes a more bad day it is just something I have noticed...sorry you have to deal with this I know how miserable extreme BP can be. : )

Oh so this may sound semi vain....but I am going to the beach soon and since all my shorts are the comfy exercise ones I decided to go and get a few nicer going out pairs to take instead of only wearing " my lay on the couch" ones I have now. And while trying them on I noticed that the back of each knee and down my calf is covered in spider veins with one knee having what appears to be a varicose vein....I had noticed last year a small spider vein developing but never thought much of it as it was small and I figured that it was from maybe sitting down more while I was in college studying....so I tell/show my husband when I get home who says "yes I know you have old lady legs" thanks for telling me dear..because apparently I don't pay attention to the backs of my legs at all...okay enough ranting, but I am only 24 and feel like an 80 yr old women so to have the back of my legs look like someone drew on them with a marker is kinda depressing...I guess the question is do you think they are from blood pooling from POTS or possibly the cause of POTS because the valve is leaky and not returning blood flow correctly? And is this a "normal" thing for us with POTS or even without POTs to get in your 20's? My mom is 47 and doesn't have one spider vein so apparently I didn't get blessed with her genetics on this... Also would compression stockings help? I have wanted to try them to see if they would help with POTS in general but have no clue on what compression/type/etc to get....as always thanks for listening and sorry if I sound vain I in all honesty would not really care it was just a shock and made me feel like one more thing/ part of my was being yanked away by being sick....

When I got diagnosis end with CFS/ME 3 yrs ago I struggled to loose/maintain my weight over the course of 2 yrs I went from 125 range to 159 lbs (I am 5'4) it didn't matter what or how I ate I could not loose weight, then last Dec 2011 I go sick and it caused a huge POTS flare which led to my diagnosis (I suspect I had POTs for a few years as i had many components prior just not as bad as now) I knew I needed/ wanted to loose weight so I joined weight watchers (I had tried a year before with no success) and this year I have gone from 159 to 117(current) however for the last six months I have not followed the plan and have not made the best food choices. But I was loosing weight to a point it was scaring me as I was no longer trying to loose weight but maintain at 120-125 (i hit 113 and was getting a lot of questions by coworkers/family on my health at that weight as you could see every rib and hip bones), so I do eat sweets not excessively but a lot more then when I was actively trying to loose weight and sticking to the plan. I have always had a fast metabolize and prior to CFS I was able to maintain my weight fairly easily..so it seems to me that POTS almost kicked my metabolize into overdrive, but I guess if you think about it with standing heart rates in the 180's my body is essentially running a marathon at all times...now I just with I could get some muscle mass as all of mine is gone from not being able to really exercise....

Very neat...especially the diagnosis of vitamin B12 deficiency...really makes you think..thanks for posting

A year and a half the first time my vitamin D level had been tested and it came in at 17 with my age and being a female my doctor said that ideally I would be in the 70's so she had me start taking 10,000 IU of D3 that I got OTC for 3 months after 3 mos I retested and my levels didn't budge ( I also tried being outside for 15-30 mins in full sun with no sunscreen each day as well hoping to raise my levels) so I continued on 10,000 IU for 3 more months retested and my levels where 24..So she wanted me to do 10,000 for 2 weeks and then 5,000 IU for a mont and then drop to 2,000 IU for the remaining time till I retested at the end of 3 months, got retested and my level was 11 so I dropped again..so for the last3 months I have been on 5,000 IU (I did2 weeks of 10,000 IU) and am supposed to retest this week to see what my levels are. She did tell me, and did my cardiologist that some people need a higher maintenance dose then others and that newer research is showing 5,000IU to be the ideal limit that most people require (and both doctors take 5,000iu a day) so I am guessing that 5,000iu may be for me what will be required for possibly ever. I do seem to have problems with absorption (is what I am thinking) and I wish my PCP would look into it a little more because last time she checked my Vit D level she checked my B12 and it was 202 so two points from being low however, everything I have read has said that the ideal range is in the 500's.....as far as noticing any side effects from taking Vit D3 I have not had any ill effects and when my level was a little higher I did notic that my joints didn't seem to ache as badly, and that I didn't have as much as the constant headache, but ci am not entirely sure if that was due to Vit D level at the time or I was just having a few better weeks.

One of the reasons love this forum so much, is because it shows us we are not alone! My switch from eating and still being starving to the smell of food about making me vomit happened this morning...and I think I may have found a trigger! Yay! So up until today I never realized one pattern it seemed that it didn't matter what I ate all of a sudden things would change, I could eat a salad 3 days in a row with no problems and the 4 th day I ate the same type of salad I was on the loo directly after and feeling miserable. Well Wednesday my office and I traveled to a work convention, I was a little nervous at overdoing it, and well I did and am now paying dearly (but the day of pushing and freedom was fun at least) we drove 6 hours to a large city, ate a huge meal that evening (afterwards I spent the rest of the evening in the loo and bed) the next day we went to classes, walked around venders, walked a million blocks to a museum, and watched a late night movie plus ate a heavy dinner and cheesecake (I didn't really eat until dinner, I was struggling pretty hard to keep up with the group and pushed way past my limit all the while putting on my "pretty sick face" ) well when we got back to the hotel,my heart rate was high (which is normal when I am up and about) but I noticed my BP which is usually 70/80 over 30/40 was in the 120/130 over 70/80 range so WNL but higher then my "normal" I have noticed this pattern before with throwing me into a flare, as my BP usually drops and then levels out when I am upright....so I drank a lot of water and went to sleep (of course after chatting for a couple hours while laying in bed with my roomie) well when I closed my eyes I felt like I was spinning, but I pushed through and "tried" to sleep, and all day today I have felt well hungover/drunk...my heart rates high, I feel off balanced, and just generally off, and am nauseas to the point of all but throwing up even with water...we did drive home today which didn't help, but all I have been able to manage to eat was a smoothie, and while laying back in the seat as far as it would recline while everyone else got lunch, I got one litter bottle of smart water down and some saltine crackers which did help keep me supine the next couple hours home....sorry I feel like I am ranting and going on, but I really think that pushing it so hard which = low blood flow to digestive tract all day = no eating and feeling sick even drinking water...this is just my theory but I wanted to share because I am excited about connecting something...it has only been one day but with the way I feel right now I know it may be a long while before I am back to the way I was feeling 3 days ago.....gotta love our lives sometimes, constantly giving up one thing for another.

Yes! Although I have had off and on GI symptoms for a long time, December 2011, I got really sick, the smell of food would make me dry heave and eating anything had me throwing up and other lovelies. Which landed me in the hospital (12 days), I also had my gallbladder removed (no gallstones, but was all scar tissue, so surgeon said it was mostly not functioning correctly my whole life) however, even with the gall bladder gone I still had/have bouts of severe nausea, throwing-up and gastric dumping and alternating constipation/diarrhea....but for some reason unknown to me this last month I have been eating everything with no problems and have actually flipped to being starving all the time to the point of nausea soooo I am not sure what is going on at the moment. I have always though contributed all my stomach issues to POTs and my digestive system constantly having blood flow being pulled away from it. But I am not sure what to contribute this change in being so hungry too...other then I was diagnosed with a hiatal hernia when I was in the hospital that the doctor said would be okay without treatment...I am thinking maybe treating it should become an option, but don't know how to go about it now....

Good luck on the 5K! I have been debating signing up for one, and seeing this makes me think I am going to try it, even if I have to walk/crawl the whole thing

I was 20 when I had the mirena placed (did not have kids prior, so placement was pretty uncomfortable, but manageable (i did found out though when having it removed that my uterus lays to the right and my cervix is very narrow, which my new OBGYN said is probably one reason it hurt like it did)) I just had it removed a few months ago as my husband and I are currently TTC. But I loved it! My periods were irregular for the first few months then until a few months ago no period..I would cramp occasionally but no bleeding which was awesome. I would greatly recommended it. I have noticed since having it removed that my sex drive has increased back to what it was prior to the mirena( which I never even realized had decreased until I no longer had it)..I plan on having another one placed again once we have kids, I do feel like not having my period really helped my hormones level out greatly, because like you I am also irregular and could spot every day for a month and then go months with nothing (talk about crazy hormones).

Thanks Joann for the info I tried it and it worked great thank you for the recipe mydoggielovesme2 I have it written down and plan on making them as soon as I get a little energy. And don't worry about the spaces I am on an iPad too, and even though it will show spaces as I type it bunches it all up when I submit it, thus my excessive use of smiley faces to help break things up

Hey Kris. I am/was with you for 3 yrs I was unable to loose the weight and despite dieting I just kept packing on the pounds, then last year I started weight watchers, and with NO exercise I went from 159 to 117 lbs. it wasn't easy I had tried weight watchers before and hasn't been successful, but one thing I learned when I was actively trying to loose weight was to count EVERYTHING (even points for Gatorade) the difference between loosing weight and maintaining weight with the ww point plus program is 6 points (which isn't a lot when you really think about it) I stopped measuring this summer when I hit my goal of 125 but had continued to loose just by sticking to about the same eating plan, I just stopped measuring everything (I mean everything, even if it was only a TBS because it adds up) I am sure being " sicker" this last year has helped some as I have a lot of GI issues and was super nauseas a lot after eating (however, this last month I can't stop eating, I feel like I am starving all the time). But hang in there! I gave up so many times because the weight wouldn't come off, and when I first started to want to loose weight I looked at all the weight I had to loose and would get overwhelmed, so I started setting 2lb or 5lb goals and being able to reach those smaller goals in a few weeks (like one month I only lost 5lbs, but I was happy because that was my "goal" and I had done it,not sure if that makes sense or not) but it kept me motivated to keep going. My new goal is to build muscle, because although I weigh less I am still all fat because I am really not able to exercise, and I would like to be able to be strong not just skinny and I know it might take time, but I know in time it will happen just have to keep going and be a little more creative with my exercising.. Like you before getting sick I was very active, out doors person, helping on the ranch. It was nothing to help brand calves all day, stack hay, ride pastures, and fix fences, now I am lucky if I am able to get outside to feed the horses or brush them. And stacking hay or branding calves out side in the heat is no longer a possibability which *****, but I am hopeful one day it will happen again for all of us, we will get our life back. So hang in there and please know your not alone Oh also allow yourself o use your extra points every now and then too. I actually found the weeks I ate all my points I lost more, then the weeks I maybe didn't eat all my daily point allowance..not sure why, but I feel like maybe because I was munching more throughout the day it kept my metabolism jump started.

I usually try to drink 30-60 oz of water a day plus Gatorade on bad days..I haven't really ever tried Smart water, other then just grabbing a bottle here and there, but I had a patient today tell me about electrolytes that you can buy at the health food store to add to reg. water. I was going to buy some to try and see if it makes a difference because if I don't start retaining some more water soon I am going to float away!

Thanks for all the tips Mydoggylovesme2- I would love to try your healthy breakfast cookies, if you don't mind sharing Corina- I love that your boys cook, I have already told my husband countless times that if we are ever blessed with boys, I am gonna make sure they all know how to cook it is such an important thing to know. I too use my kitchen stool but I am thinking after reading your comment I might have to switch it out for one that has wheels and can move up and down! I think that would be very handy. Joann- I love the idea of making a batch of pancakes and freezing them. Do they reheat well? I agree despite all my efforts there are some weeks when it is all fast food and frozen meals, but it helps for me to know that at least on the weeks I feel semi okay that I am trying to be a little healthier Boymommy3- it is great that your husband is helping some. I also used to tackle cook days with friends pre pots....and now with pots I have just slowly learned to adapt and make a couple extra bags of meals to go in the freezer when I cook on the days I feel good. If there is anything I have learned from being sick it is how to adapt well slightly anyways

Low Vit D (with no improvement despite taking 5-10,000 IU a day for a year and a half, and no sunscreen all last summer (just got a lot more freckles ) 2points from being low on Vit B High C reactive protein (it is always high, doctors don't know why, so they have just stated it must be my "normal" Through out the years my platelets and hemoglobin and white blood cells have jumped between being a couple points too low or too high (never had tx due to it) Last 3 years all my CBC have low creatine and bun but the doctor hasn't even mentioned it too me, I just noticed it when I was going through my labs Found two nodules on my thyroid that have gotten slightly larger the last couple years, but no treatment as my levels are always WNL although they do jump from the low to the high side.

So after getting sick my husband and I were eating a few too many frozen pizza's (which prior to getting sick if we had pizza it was a homemade one) so it has been a struggle for me to cook while being sick especially after a full day of working (which I am sure I am preaching to the choir on this topic )... but the last few months I have found a few things to help make cooking easier while staying healthy and thought I would share. I would also love to learn any tips any of you have as well : ) so if any of you are on Pinterest I am sure you have seen the freezer meal ideas...well I decided that would be a great thing to do, I mean spend four hours cooking for 28 or so meals easy right?...ummmm well not with POTS well at least for me. I decided one day I was going to tackle it all when I felt good, I barely made it through the grocery store, I am actually pretty sure that we wasted a lot of food that week since I was too tired to cook all the extra stuff I had bought.....so I have learned to well do my own thing. I work tues-Thursday so usually Monday (if I am feeling good) I do a few things to prepare for the three days I work, because come Thursday night I look like death!so Monday I make mason jar salads, some weeks if I feel good they have lots of yummy things, weeks I am maybe not feeling so great it is maybe just some salad dressing in the bottom of the jar, a few different types of veggies, some frozen Tyson chicken (I know not the healthiest option, but its quick) and lettuce, I make enough for my husband and I to grab for all three days, I also make a few over night oats in a jars to grab for breakfasts, or chia seed pudding and if feeling up to it will cut up some fruit and put it into a mason jar to also go into lunches...this isn't the whole lunch (well not for the hubby) so a lot of times I will try to make a sandwich to go along in his lunch the night before because in the morning I am lucky if I can make it through the shower...okay so for my freezer meals I am on a much smaller scale, if I am making say a pot roast, I will cut up enough veggies to fill 3 bags, so two will go in the freezer and one will be used during the week, some times I cut veggies and do a few different types of meals on a day I am feeling good, or if I am cooking dinner one night and am feeling good enough I will make a little extra to fill up a couple ziplock baggies for the freezer. I also have 10 little ziploc bags of banana chunks, some fruit that i had on hand when i made the baggies, and spinach all in one bag that I can pullout and just add some juice to, to make smoothies (its funny because before getting sick, it was nothing to throw together a smoothie before work, now i don't even have the energy to peel a banana) I have also learned that not every week we are going to eat healthy or homemade, some weeks I am entirely too tired to cook or make lunches and that is okay, but it has helped me a lot to have a few extra meals in the freezer to pull out and throw in the slow cooker or set out to dethaw and cook on the stove. I would love to hear any cooking or lifestyle tips you may have I am always looking for something to help make my day/week easier (oh I am also sorry about not having paragraphs, I still haven't figured out how to do that one yet )