leydengs

Thanks micheller - it is like cement and it took me weeks and I would call the doctor in tears because I was so uncomfortable and they would just call in another stronger laxative which still did nothing. mattgreen - I have always been very constipated, even as a little girl. Thanks for the info, I might try asian rice to see if that helps micheller - I do know that if you do too many laxatives/suppositories you can get Lazy Bowels which is why I only use suppositories if I have to. JennaC - that's interesting, I eat my protein pancakes every morning for years (egg whites and GF oats). But if it might help to cut it out I'm willing to try it!! Thanks for the info!!

They say the worst job for a person with POTS is sitting all day and I work as a computer programmer so I get the worst leg pains (in the back behind the knees). I try to get up and walk around which helps the pain until about 1 minute after sitting back down. I am constantly moving the positions of my legs but nothing helps. Does anyone have any remedies for this? It fricking hurts!!

I'd have a doctor who specializes in POTS do the test or read our results. I don't believe your HR has to stay high for a full 10 minutes, the fact that it jumped that high (anymore more than 30 bpm) should be enough. Good luck, it can be VERY frustrating finding a diagnosis especially if the doctor doesn't understand the disorder. Good luck!!

Thank you Christy, I'm desperate enough to try liquid forms!! I'm supposed to take miralax to but it does nothing for me. I remember a nurse prescribing me a laxative and she said "when you take this, you will not want to leave your house it's pretty strong" and I took it and called her the next day and said "It did nothing for me, I didn't go even once!!" She couldn't believe it. I have weeks of constipation, it's frustrating!!

Hi everyone!! I'm going to plan a fundraiser for the Dysautonomia International non-profit organization. I'm going to do something simple like a chili feed, this won't be until after Christmas (probably Feb or March) and it will be here in Nebraska so if anyone is interested in coming, helping or donating let me know and I'll pass on information to you when I get everything setup and a date and location setup. I'm still waiting to hear from anyone that wants to start a support group in Nebraska

No worries you will be throwing around medical terms in no time. I went to an appt and had to explain to the nurse just what POTS was and she said "Are you a nurse, you use to many medical terms and you explain it so well you sound like a nurse!" HA! I think we all know so much because for a lot of us it has been years and years of so many different tests. So many doctors get confused when we come in with 100 things going wrong that they tend to pick a couple and focus on trying to find a cause for those so they'll say "You have IBS" and you say "Okay so how does that explain my dizzy spells?" and they have no clue so here goes more tests. We're glad that you're back!! I switched to GF and it helped a little but now I'm back to bad tummy pains again so I think I'm switching to DF too. I think it can take a bit for your body to adjust to GF because it has to get rid of all the toxins from the other foods and then your stomach can stop being so inflamed. How often do you see a nutritionist? That is a great idea!!! I didn't think of that but now that pretty much everything upsets my stomach it wouldn't hurt to see one.

I am always nauseous, I think that affects me more than anything. Some days it's just an upset stomach and some days I have to stay near a bathroom. Yes some of my flare ups cause bad tremors, mostly affects my right side and my right leg the most.

Holy lord I ALWAYS get negative lab work. I swear that every single test I've ever had, blood work, mris, spinal taps, test for addisons, eegs, ekg, colonoscopy etc, etc, etc everything comes back negative/normal. Well I take that back the tilt table test was the only positive I got. Now if a doctor says he's going to run a test I get annoyed and think "What's the point, it's going to be normal!" Don't get me wrong I don't want to have someone bad wrong with me but I'd just like to know what is going on!! Also I was told the same thing that Chaos is talking about, when I was in the hospital they thought I had MS even though all tests came back saying I did they said that I just may not have any lesions "yet" so it is possible. Stay positive photograherrn!!!! Good luck and keep us posted!

JennaC - that is great, can you provide me with some examples of things you eat? I"m a health nut so I tend to eat as healthy as possible so I don't eat junk food often at all and I eat gluten free which now I'm wondering why since my stomach is at the worst it's ever been. I've been splitting up all my meals today if I normally eat something at 9am I am eating 1/2 of that and then at 10:am I eat the other half and that is helping a bit but my reflex is still bad and my chest really burns.

Purple - First of all it's great to meet you but I am so unbelievably sorry for your frustrating journey and for what caused your POTS. Before getting my diagnosis (I too have had it since I was a 13 or 14) I was told I was faking even after passing out during soccer and basketball games, I was told I was depressed, I had an anxiety disorder, I have ADD, etc. It is a very frustrating journey and I still feel bad saying when I don't feel well, I usually try to hide when I feel horrible because for so many years I was told that it was in my head so sometimes I think that's true. Finding doctors who know of or specialize in POTS will be huge because they will be more sympathetic to each other your symptoms. Doctors who don't understand POTS just don't understand when you rattle off all these totally different things that are wrong, they just assume that you are making it up because it can't be possible to have that many things wrong at once. If you aren't happy with a doctor don't feel like you are stuck with them, go see another one until you find one that will listen to you!! From my understanding of the tilt table test if your HR goes up more than 30 bpm that's POTS, I don't think you have to have the BP drop to get the diagnosis - someone please correct me if I'm wrong If you need a laugh check out the chit chat forum and go to "You know you have POTS when...." they are pretty funny and you will realize that all the crazy/strange things you do are TOTALLY normal to us http://forums.dinet.org/index.php?/topic/18761-you-know-you-have-pots-whensilly-post/ Good luck and keep us posted!!

Thanks for the info I'll definitely take a look. This all started before eating the rice cakes but I'm guessing it might not be helping so thanks again for that information!!

I have HUGE tension lumps in my neck so I have a lot of neck pain too so like Angela I use a heating pad but I have to be careful with that because sometimes I will overheat and start sweating really bad so I can't use it for very long.

I was diagnosed with IBS (basically they didn't know what else was causing it so they just said it was IBS), I had an Upper GI and drank the barium and they said it goes through my stomach until 1 certain spot and then it just stops so they had me drink another barium drink (not the smartest decision on their part) and the same thing happened. I have chronic constipation anyway so the thick barium made things HORRIBLE so I had to spend the next two weeks trying different laxatives which did nothing and then drinking Go-Lytle (the jug you drink before a colonoscopy) for two days which helped a little bit. All I was told is that my stomach digests really slowly and that was it. I wasn't given any meds or diet changes or anything.

I'm not sure what is going on but for the last month my stomach is just not working! I always feel slightly nauseas at somettime(s) throughout the day, I've been that way for years. I had an Upper GI and they found that my stomach digests extremely slow but for the last month I feel like I'm on the verge of vomiting all the time. It seems to be worse if I eat "heavier" carbs (ex: potatoes, rice, pasta, etc). I basically eat rice cakes throughout the day and a little oats in the morning but I have times where I have to be near the bathroom because I feel like I can vomit at any second the the reflex feels like if I burp my throat is going to come out of my mouth (sorry TMI). I eat gluten free which helped for a little while and I eat 5-6 small meals a day and now I feel like I'm going to have to break those up into like 10 meals so that way I don't have so much food in my stomach. Oh and I'm really bloated. Does anyone experience this and if so do you have any suggestions. Now if I drink anything the reflex gets much worse (no matter what I drink, water, Gatorade, soda, etc.). Help please, I feel awful!

I had a lot of problems sleeping too and I was afraid to take sleeping pills because I was a single mom at home alone with a 2 and 4 year old at the time so my doctor started me out on a very low dose which was plenty for me and it was amazing! I don't take them anymore, although right now I wish I had more since I'm having problems sleeping again. I might have to try the herbal tea thing

I always have flare ups when the weather changes. I'm in Nebraska and it cooled off quite a bit (went for 80's to 50's) and I've been feeling horrible for about 2 weeks now.

Thanks NMPotsie!

Good luck with the the new doctors and I hope they are finding ones that specialize in POTS. There is a link on dinet.org for doctors who specialize in POTS and where they are located. Do you have to be referred to them or could you call yourself and set the appt? This is the place to get some ideas to help with your symptoms but just remember that if it works for some people it might make you feel worse. For example drinking cold water and more than a couple glasses makes me feel HORRIBLE while others don't experience that. The best thing for me is increasing my salt. I carry a salt shaker with me when I'm working out and hwen I start to feel dizzy I pour some in my hand and take that and it seems to work really good for me. Good luck and I hope people can give you some tips to help you!! Keep us posted

NMPotsie, what is an abdominal binder and where can you get one? Can you purchase salt tablets at any drug store? Is there a brand that's better?

When you can go into a store, walk out 5 minutes later and have absolutely no idea where your car is located!! (this happened to me yesterday) When you can get up to go to the bathroom, get dizzy, vision goes dark, lose your balance, keep walking while bouncing off the walls and still make it to the bathroom and you are totally sober - I think I've perfected that one!!

They should test for everything because I've read posts on here where people have POTS and lyme disease so my guess is that they would have to rule out all other causes. I know they tested me for everything possible!! I was not aware I had that much blood to give sometimes ha!

That's a tough one, it's very difficult for someone else to understand what you're going through. Check out some of the links at the top and there is a great video that explains POTS, he could watch that. My bf watched it and he was amazed (even though he's done research on it and asked me tons of questions about it). Could he go with you to a doctor appt (maybe that neurologist) and have them explain to him exactly what is going on with you. He could read some of the stories on this site from people who are suffering from POTS to see just how much this affects your life. You are far from weak and incapable, what you have is something that you have absolutely no control over!!! If he's willing to learn about what's going on with you I'd start with the video, it's like 43 minutes or something like that. This isn't something that is going to go away tomorrow and even with meds it can get better some days. One thing that I learned was that if I'm tired and worn out I absolutely have to rest or my symptoms become much worse. Increasing my salt has helped a lot, switching to gluten free and eating smaller meals (6-8 meals a day with little carbs) has really helped me as well. Trying to get out and walk, if you are able, helps my muscle and joint pain. Good luck and don't get depressed!! There is so much support on this site and take care of you. He will either be supportive or he won't that still doesn't change the fact that you have this disorder so you have to do what is best for you Good luck, my guess is he'll come around once he learns more about it, it's difficult for a person to wrap their brain around what's going on.

Chaos - can you get those Nuun tablets over the counter? nephilimencased - I do have A LOT of stomach problems. If I drink too much water I start getting really bad reflux where my throat hurts and I feel like if I burp even a little bit I'll puke. I had to switch to gluten free which seemed to help. Now if I eat anything non gluten I feel HORRIBLE!! I typically do 6 smaller meals a day (I'm big into fitness) but I've even made those smaller and added a couple more meals to help as well. Imre - pretzels is a great idea. I've found that if I take a couple sips of water and then a couple sips of gatorade that seems to help quite a bit. Puppylove - I'm the same way so I eat little meals every 2 hours and that seems to help quite a bit. I try to avoide a lot of carbs since that makes it worse too. Right now I've been having a flare up so I've had to cut down even more than usual. I was feeling great yesterday, I mean awesome!! and then when tucking my kids into bed I felt like I was going to pass out. I lost strength in my legs and my bf had to help me walk to our bed because my legs were shaking so badly. It's so FRUSTRATING!!!!

I feel worse when I drink a lot of water, no matter the temperature but when I drink cold water I notice that I feel like I'm sitting in a freezer, my fingers are ice cold.

That is great news, congrats!!! Your pictures are gorgeous!