surfgirl14

I have had burning pain before in my stomach, never found out what it was from but it just subsides on it's own. Hope it gets better.

I take zofran for nausea and have nausea patches tool. Maybe try some pepto for your stomach it might coat your stomach so it will sooth it.

Thanks everyone And I will let you guys know how it goes pupplove

yea funny you say that because I am extra sensitive to medicines... you just reminded me to tell my doc tht .. thanks lol

Hey Guys. So I have a couple questions but also wanted to give you guys an update on things. So I am out of the hospital I got out the 28th of May but haven't had a chance to get on in a while... hope everyone is well So I was in the hospital for about 2week after the first week i got transferred to duke childrens to get better care and to be under the supervision of my cardiologist. Anyways things are slowely getting better but it's gona take a little while before I can get my stomach issues taken care of. I am waiting to get into nationwide childrens hospital in ohio but oviously as you guys know the top hospitals that specialize in the care we need, take a long time to get into. But I just wanted to let you guys know whats been going on and such before I ask my questions

Ok so one thing is whe I was admitted into the hospital the pediatrican taking care of me told me she wanted me to be put on birth control to help the pain I have with my periods and the heavy bleeding. So with that said I have a appt with my pediatrician on monday to discuss with her about getting put on in. My question is with my conditon POTS is there a greater risk with me being put on it? Will I have to be monitored on it more?

Also I was wondering so I have chest port and a little earlier this evening me and my sis were playing around and her arm elbowed me right where my chest port its. When it happened it sent me in a lot of pain and it felt like my chest port got moved. Can you injure your chest port? If so , what could happen? I am not really worried about it due to me going to my pediatrican anyway on monday (so if there was something wrong she could tell me) , I am just more curious then anything.

Sorry this got long. Hope all is well.

Hugs

Hey guys. So I don't really know how to explain this so i'll try to explain it to the best of my ability. I keep on having this really weird feeling in my head kinda like a brain fog, out of body, not feeling fully there. ugh its really hard to explain to people so I am not sure how to describe it. During the epidosdes I also get shaky and feel just so out of it , and that it's hard to have a conversation. Also I feel tired during the episodes. One thought I had was could it be problems with blood sugar? ex. diabeties, hypoglycemia etc? I have thought about purchasing a blood sugar monitor and moniotor it during this periods to see if there is anything that is going wrong with my blood sugar during these episodes. This feeling is so overhwelming that I just want to sleep because it scares me so badly and makes me feel so very weird. The only thing new that I have started was a medicine called ridalin, but I don't think that has anything to do with it. The reason why I think it may be a blood sugar issue is because my blood pressure and heart rate are fine during these episodes. Idk it just something doesn't feel right with my body during these episodes it is starting to scare me. Do you gusy think the blood sugar things is worth looking into? Has anyone had this before? Suggestions? Just starting to get a bit freaked out , I really hate this feelings. Its awful

Thanks.

Thak you all. I appreciate the all replies, responses, etc. TPN really hasn't been bad at all I am getting blood sugar levels checked every 6 hrs and blood work I got done at 4am this morning. I haven't heard anything back yet about the bloood workd or sugar leveles hoping they were just good. They have gotten a diatecian to consult after she overheard that I was vomitting she came into my room and started to find out what was going on. So now her and my doctor have been working on the right amount of TPN to give me and diet stuff. My heart rate did change though last night like I have never seen it. It was 57, then 52, then 47. Those are pretty low for me if anything I usually stay 74. So idk if they is a good or bad thing. lol.... I'll keep you guys updated.

Hugs

Thank you

Hey. I totally understand how you feel about this. This is too one of the symptoms and issues that scare me the most (apart from GI issues lol ). But anyways yes when I get like this I just try to drink lots and lots of gatorade/water and increase my salt and rest , rest, rest! Just remember POTS is NOT life-threatning although it is life-altering and scary at times. Hearing that it wasn't life-threatning was the hardest for me to hear becuz I didn't belive it and and times I still don't. But my cardiologist tries to reassure me that I am not going to die from this and to just try to stay calm at times like these. Now I am not telling you heck if you get like that just ignore it and move on lol.... oviously if it continues and doesn't get better always call your in charge doctor of you POTS for advice. Even if its after hour service at the office you can always call and let them know watsup. This always makes me feel much better and puts me at ease.

One exception- I was told if I got dehydrated whether it be (diarrhea, vomitting, or for some other reason) and it is combined with high tachycardic symptoms to then be a bit concenred. This is when the role of fluids would come into play. Some doctors will call them in directly so you don't have to go through the whole ER mess.

Sending good thoughts your way

Hugs

Mestinon did very weird things to me but nothing like you describe. It was mainly like extreme dizziness, and light headedness etc. I am sorry to hear that you are having these problems :/ Hope they get better, hang in there! ... If it doesn't get better its always best and makes you feel more at ease if you consult with your doctor.

Hugs

No they really havent looked into much. I guess cuz the know I have pots and was diagnosed with gatroperisis so they feel like testing isn't necessary? idk thats my guess. They can't consult with my GI doc becuz for some reason becuz the hospital i am at and the one my GI doc practices at they don't communicate or can't for that matter. I don't understand taht at all but its just frustrating. It may be becuz I have had a upper endoscopy before like less then a year ago and it did not show anything. Soo yea I got sick last night again and the nurse came runnin in my room this morning concerned becuz my heart rate went up .... The pediatrician in charge of me says that if I got worse or didn't get better by this morning they were gona start TPN on me. Kinda freaking out , I heart it was highly dangerous even if its only temporary and your being moniotred closely in a hospital setting Something about liver damange too, and that scares me! Has anyone been on TPN before temporarly? In a hospital setting? How did the monitor you, and make sure you were ok? Does it hurt, or does it make you feel differently? Sorry for the questions as you can see I am concerned teenager lol ... I don't really know what to expect and the hospital I am at are not that great with young adults. I was suppoed to be on the Hemby Childrens side but they said there were not enough beds and since I was 18 then I had to go to the adult side but I would still have the pediatric doctors . I would say it would have to be one of the most frustrating, annoying, and confusing things every! oh not to mention the side remarks I get from the pediatrican like she said to me "well your gona be 19 soon not on the peds side anymore" and "well its time to grow up can't be on peds forever". Like really? Just be quite and do your job .... I mean heck my primary is a pediatrician and all my other specialists are peds and they don't seem to have a problem with it. My ped cardiologist at Duke Childrens sees patients inpatient and out till 21yrs. Give me a break. Not to mention I am so tiny and look so young I could pass for a 14 year old. I was even asked why aren't you on the peds side? mmm wat a good question, I ask myself that! ugh Sorry I just needed to vent for a moment. Thanks everyone for the support.

Thanks everyone. I will def take everyones suggestions into consideration

Thank you. I am really frustrated because now my mom is giving up on me and I Just dont understand why they are not consulting with my GI doctor about these issues. I am frustrated to the max! My heart issues have decreased much but my GI symptoms are still there. Terribly nauteous and then get my nausea meds and try to eat i just either A. throw it up or B. suffer for hours untill the next nausea dose. I just dont understand why they are not doing anything about it and why the havent contacted my stomach doctor. Like I want to leave the hospital and im itching to get outa here but I dont want to leave unconfidnat that im not healthy enough to leave and tht it is just going to return and start the cycle all over again . I just dont know wat to do.

goodnuff- thanks that makes me feel so much better

Hey Guys. so im was admitted last night for cardiac, dehydration, and GI issues. So wats not going away is the GI issues. I forced myself to eat a turkey sandwhich last night and threw it up. I am so nauteous its really hard to eat. I have chest port and all so they could give me artificial nutrition through that. But that scares me and stuff. I really feel as though everyryone aroud me including doctors are just thinking im faking it. Which you all know is not true and pots is so hard to show when mostly its invisible expecially the GI issues. I really dont wana force myself to eat it make me so sick Do yall have any suggestions? Has this happen to anyone? Thanks.

Hey Everyone. I got everything figured out my doctor direct admitted me and so here I am now in the hospital. Hopefully these fluids will help and i am also on a cardiac monitor becuz my vitals were unstable which should clear up soon. Now the problem i need to overcome is being able to eat and drink.. due to extreme nausea it is hard to do tht!

They called me in some IV fluids to the infusion center I got too so that should help!

thanks

Hey guys. So I am any the middle of a bad flare up.. and a very uncomfortable one too. It came along with my period which always seem to flare up symptoms but not as bad as this time. It started last night and I felt like my entire body was completley drained of all its energy and just lifting my arm hurt or my mom rubbing my arms hurt me. Every part of my body hurt and my body felt so heavy. It was a feeling that is just really hard to describe. On top of all of that I was having bad diarrhea and extreme nausea. I can't drink anything w/out running to the bathroom to throw up (which I havent yet). I know all of this has sent me dehydrated and had flared up my POTS. My heart rate is 111 resting and I cry when I get up becaue my heart rates shoots up to 150 and I feel like ima fall down and just cant breathe. So with all that said I don't really know who to call. My stomach doctor, my cardiolgoist, pediatrican? ugh so confusing. I am on weekly IV fluids but don't get another infusion till friday I can not wait till then. I am terriby weak and out of breath from my heart rate. I made a call to my cardio to see if he would call me in some but god knows how long its gona take to hear back from them. Any suggestions? Should I just go to the ER or wait? I just feel so horrible ... if anyone had any suggestions or comments please feel free to reply.

Thanks.

Hey. Umm well I have had my PORT in since March 2nd of this year and was fine up until a couple weeks ago. I just started having some pain. But it flushes fine, and I get great blood return. No feveres etc. I am pretty sure if it was a infection it would of showed itself by now. Ive had a pain a little over a month now. I am very tiny so my port is really visible under my skin ... they say the more skinnier you are the more pain youll have. sorry to hear about you guys experience with ports and what your freinds endured. I am not really scared by wat u said lol its fine, my doctors have reassured me and I have a great infusion team that would know if anything was wrong. I have asked about the pain and they said its fine .. I have good blood return, no problems acessing/infusing, and no fevers! Just annoying pain lol

Hey Guys. Yes I found a lawyer that said exactly what you guys said. He doesnt charge unless I win but only then does he take 20% I tried to tell my mom but she doesn't even want to pay the 20% its hard when your still a teen being only 18 (well a young adult lol) so I still have to rely on my mom and such.

yay!!! Glad to hear that I was too denied but mom can't afford a lawyer to help apeal that case so we are not gona appeal it sadly But I am very happy for you I am sure its gona help you help a lot! I know the financial burder it can put on families being the kid in the family and watching my mom struggle to pay bills. Soo Very Very Happy for you

aww well im sorry to hear that you have hard times acessing it some times :/ Hope that gets better I am actually seeing a childlife specialist i think tday or sometime next week for port education. I am going to ask her about the random pains and see if she has every had anyone experience that... and wat to do when I do experience tht. Cuz my pain like get so bad tht i want pain meds. Hope all is well.

Hugs.

ChristyD.- did yall see her at the childrens hospital of winsconsin, i am pretty sure tht is where she practices now.

What was your appt like? Did it take a long time? Was there a lot of test ordered?

Thanks.

Thank you !