Brwneyedchica

Patti I just recently started seeing Dr. Amer Alsheklee and I really really like him. I actually see him in a UH satellite office it's closer to me and I can go to appts myself and not worry about paying for parking, or getting lost... If you want to know more just pm me. Good luck!!!

I first got sick with POTS when I was 15 and thus I didn't finish highschool. I did however go through the local college and get my GED before my "class" in highschool had graduated. One of my friends signed me up for a myspace account, where you talk to old friends. It's nice to talk to people I used to go to school with but on the other hand It makes me feel kinda sad. I've always been the type of person with lists of things to accomplish and all of the people I went to school with have bachelors degrees or are in grad school. I struggled through college for several years and only had nursing clinicals to get through but was too ill to continue and faced the probability that I would be too ill to work as a nurse on my feet for long hours. I honestly feel embarrassed to even say that I received my GED and I just feel like a big loser because I really have no accomplishments(unless you count getting out of bed everyday and putting one foot in front of another).... I'm not even able to work right now. I hope that I can do something to feel better about myself in the future when I am feeling more up to it. But right now i'm just sick and struggling. I don't mean to be such a downer but I think that some of you will understand how I feel because my family and friends just don't.

I just had this test a few weeks ago. I had to eat tasteless watery oatmeal. Like the others have said you lay on a table and this big machine comes over you and takes pictures of your stomach. It's not bad as testing goes, but like Morgan said... i'd bring a book.

I was thinking of you lastnight... I'm glad everything went well!!! I know first dates can be nerve wracking for anybody. It's great that you seem to have found a nice guy

The first few weeks after I met my current boyfriend I felt good enough to go out and about. But since then i've been sick pretty much the whole time, to the point that I can't really even go anywhere. He's really very wonderful about my not being able to get out much and he still does things without me several times a week and spends the rest of his time with me. Our relationship is pretty serious and he's talked alot about getting married. But I think that since i've been so sick and stayed so sick for the past several months that i've been starting to feel pretty hopeless about ever getting better. And I think he kinda picks up on my attitude when i'm upset like that and he freaks out and wonders if he really has it in him to deal with this forever. Most of the time, it's not that bad and I tried communicating that to him along with the fact that it's like a rollercoaster...after being sick for awhile things always look up and I feel better. Does anyone have any suggestions on how to keep a more positive attitude? Or perhaps a better way to deal with coping with this and not accidentally scaring away the best thing that's ever happened to me? Maybe leaning on my boyfriend as much as I have been isn't a good idea. I just don't feel as "strong" and capable of dealing with being sick when I have no kind of reprieve or chance to feel better and maybe gain a little weight back and store a little energy. I'm pretty much open to any suggestions or advice at this point.

I've been thinking and thinking about this and I've pretty much decided to hold off on filing for social security/disability. I want to finish online Medical Transcription classes that I've been trying to struggle through. I'm going to stay off work with the help of my FMLA paperwork and possibly look into the long term disability benefit. I really and truly feel like if I could just make it through the coursework, i'd do fine working at home. Even if I felt sick, I could work in my pj's and run to the restroom. So that's my plan for now.

I've went over all the old posts regarding the whole process of applying for Social Security/Disability. I called the only Attorney in my area who specializes in this issue and they advised me to go ahead and get the ball rolling and fill out the first paperwork and then contact them after that point. So I'm going to try and access my complete medical records from all of my ER visits, all of my doc appts and results from all blood work and tests. I'm slightly confused about this... can I actually send these copies to SS myself, and maybe mail it to them so that they have to sign for it? Has anyone applied online? I found this site https://s044a90.ssa.gov/apps6z/i3369/ee001-fe.jsp it seems legitimate. Is it better not to file online? I just don't know how i'm going to even get my medical records let alone go sit at the SS office. From what I read it seems as though I should have all of my medical records in tow when I fill out the paperwork so I can list what testing i've had completed and when. I've been severely nauseated and vomiting for several days and nothing helps. I went and saw my GI doc today and he told me from his stand point that there is nothing else that he can do and that it's a neurological problem in my body. He wants me to go back and see the POTS specialist again, which i got an appt for April 17. I was on a medical leave from work for a month and I literally made it to work for a maximum of 5 hours a day on 6 occasions and I paid dearly for it. After the doc told me that he really can't do anything else for me I started crying, and he just kinda shuffled his papers around and cleared his throat and I felt so stupid. I told him that I'm thinking of filing for disability and he thought it was a good idea. He said he would fill out paperwork for FMLA time from work so that I don't get fired, but is it better that I just quit? I'm at the point where I get really sick for any of the time that I make it to work. But I did start paying in for LTD in November... so is it better to try and keep my job and try and get some kind of LTD? I'm kinda confused about all of this... Any pointers would be greatly appreciated.

I've been feeling yucky since Valentine's Day. I went and saw a new POTS specialist who sent my blood to the MAYO clinic to test for that antibody (sorry serious brainfog today, can't remember what it's called) and he said that for now the other drugs i'm on should stay the same. I've been several times to see the GI doc and he said that he thinks I have "an element" of IBS and started me on Zelnorm which really seems to keep things moving along better. I also had a Gastric Emptying Study which came back normal. I started feeling better and went back to work... I actually made it back a whole 6 days and now i'm sick again. I feel just as I did in February, intense unrelenting nausea. I take Zofran but an 8mg tablet barely seems to take the edge off... if I take more than that I feel really snowed (confused/tired). I think i've actually kept from going to the ER several times with the Zofran. I'd much rather be tired than be vomiting for hours. Nothing else i've ever tried for nausea has worked for me. I'm just very very tired in every sense of the word... I feel more like 80 than 22. Work is alot more stressful than it used to be, and it seems as though it actually makes me feel worse. I think i'm at the point where I need to think about quitting my job. It seems to be hurting more than helping anymore. I'm at the point where I don't care if I have a car, or new clothes or a place to live. I'm so tired of dragging myself to work, I feel like my quality of life is not good. I waste what little "good" time I have at work, when I can even make it there. If I could only figure out a way to keep things afloat for a few months, maybe I could finish my medical transcription class online and work from home. I'm sorry to be such a complainer but i'm just having a really rough time....Thanks for listening...

I went about 2 weeks ago and saw a urologist because I was having frequent urination, it was burning when I was able to go and I felt like I had to go and I couldn't seconds after I had just went. It felt like I had a urinary tract infection. The urologist told me that since my GI doc told me I have "an element of irritable bowel syndrome" that it's all related. Food sits in my bowel and then it all of the sudden starts cramping and that's usually when I have the bladder issues. My bladder kind of spasms and makes me feel like I have to go when I don't. He told me to do kegel exercises when I feel that way, and it really helps stop the spasms.

I second Belinda's post about Dr. Amer Alsheklee... I went to him last Monday for a second opinion, and I won't be going back to my other doctor.

Sunfish, I really hope you feel better soon! I know it's a bummer being stuck in the hospital. Hang in there!

Dayna, I'm sending big (((((((Hugs)))))) your way and I hope you feel better soon! Even though you might not be able to go out and do all kinds of physical activities with your kids, you can, as everyone else mentioned do alot of other less exertive activities. You love your kids and are spending time with them in whatever capacity that you are able and that's what counts. If anything your children will grow up being more empathetic people. Don't be so hard on yourself...sometimes you just gotta play the hand you were given. Believe me I can only imagine that it's not easy but I myself have found that after feeling lousy for awhile I usually get some kind of reprieve and feel better for awhile. That's what I look forward to. Hang in there!

I went on Monday and saw a new specialist in order to get a second opinion. I really liked this new doctor and he just left me with hope that I will feel better again instead of this feeling of hopelessness I have after seeing my previous doctor. So anyway he had blood drawn and sent to the MAYO Clinic to be tested for this antiganglionic antibody. I'd never heard of this before and was kinda in awe.... those of you that have had the test done-- how long did it take to get results? Even if this test is negative, at least there are some proactive steps being taken.

My boyfriend and I are talking about getting married next spring and he wants to move to Georgia. I'm really concerned that I won't be able to find a doctor who treats POTS. At this time there are no physicians listed on the DINET list for Georgia. It will probably be a year or more before we move, but I don't want to get excited and make plans if I won't be able to receive sufficient medical care in that area. Does anyone that lives in Georgia have any suggestions of a good doctor? I'd appreciate any input.

Dayna - I looked up some info on CVS and it sounds alot like what i've been going through. Thanks so much for mentioning it. I'll see what my doc has to say about it in the am! AprilMarie - Out of the times i've been sick two of the three times I had just eaten beef in a soup or stew. So maybe I have some strange mew allergy to beef. I'm going to avoid most meats for awhile, that's for sure. Poohbear- The last time I went to see the GI doc he told me that he thought I was having "atypical migraines" and that you didn't have to get a headache to get this. At that time I really thought that I had a stomach flu several times so I didn't emphasize the ER visits. I was more concerned about the nausea/diarrhea I was having (and still am having) when I leave my house to do anything. Thanks everyone for your input. It's strange isn't it, how your symptoms can change all of the sudden....

Unicorn, I notice that we are about the same age, and I kinda know how you feel. Last year I moved out of my Mom's house into my own house. My Mom's house was always noisy and busy, ( I have 3 younger brothers). And in this house it's always so quiet. I don't have any really good answers for you besides to make suggestions of things you can do to occupy your time until you are able to get out and about. I read books, I surf the net, I call friends/family, I crochet and I spend alot of time talking to my two cats and two dogs. Hopefully you can find something to entertain you at home until your hubby maybe has different hours? and maybe visit with the woman in your apartment complex every once in awhile so you don't feel completely isolated. And don't forget, you can always PM me anytime, I could always use a new friend!

For the third time since Thanksgiving I spent the night in the ER. I started vomiting and could not stop until they gave me IV fluids and several large doses of Zofran. This is the third time that i've been in the ER with the same symptoms in 4 months. Everytime they tell me that it's the stomach flu, which I know it isn't. When I went to see the GI doc about it he gave me hyoscamine a medicine that is supposed to alleviate cramps and diarrhea and I have Zofran tablets already. None of this medication does me any good because these "episodes" come on so quickly that I don't have time to take any medicine beforehand. THIS is why I feel nervous/anxious to leave my house (as i've posted about several times recently.) Does this happen to anyone else? I have an appt with my POTS dr in the morning. But this doc never addresses the GI issues so i'm not very hopeful about it.... i'm just miserable and so weak and tired.

Today would be day 6 of the zoloft. I've been really dizzy and I haven't felt good at all. I called my Doctor's nurse yesterday after driving halfway to work and being too dizzy to continue driving. Part of me wants to stick it out and see if I have better results with more time. But i've just felt awful, to the point where I haven't been able to work. So I made an appt to see him tomorrow, but I guess I'm just kinda frustrated. He didn't seem convinced that my problem was anxiety to begin with. I originally left my house feeling fine and ended up out in public with nausea and diarrhea. Then since those times i've been nervous to leave my house, thinking that I'll be sick, and worried that there won't be a bathroom and wondering what i'll do ect. So I thought that maybe the Zoloft would help me to not worry. I think that when I get nervous/anxious and worry about things it makes my symptoms worse. So now what do I do??? Has anyone been in this place? I really don't know if I need something for anxiety, maybe I would be fine if I wouldn't get the nausea ect. so often... I just don't know what to do.

I tried to go to work this morning and had to pull over on the side of the road because I felt so dizzy and nauseated. I've always suffered from nausea, but I think the dizziness must have to do with the Zoloft. I had to call off work ( a late call) and I just don't feel good. My PCP prescribed the Zoloft for me because i've been kinda nervous to leave my house because I've been having so much nausea and diarrhea. I'm hoping that it will help once it's in my system. I'm afraid my PCP might want me to stop taking it before I really see if it works. I guess I could make an appt with Dr. Fouad my POTS specialist, but she never does anything for the nausea/diarrhea. I guess I could try and talk to my PCP and have him fill out FMLA papers for me until I get used to the medicine, so I won't get in trouble at work. I don't know what doc to talk to, or what to do..... any suggestions???

Every year usually when it gets the coldest I get some nasty respiratory bug. The only thing that ever works for me is Zithromax. I take a beta blocker - Inderal - and i've never had a problem.

Just an update: I made it to my appt this morning. Somehow they tested my urine specimen in the office and said that it looked clear, but that they would send it to the lab and culture it. I have something going on, because I was up half the night with definent UTI symptoms. My Doc also said that since i've been sick for so many years he's not really sure that anxiety is my problem and he wanted to look at the way i've been feeling from a couple of different angles. So they did bloodwork and checked my bloodcount, my bloodsugar and my thyroid. And he did prescribe Zoloft for me, he said it's a "Test" and if it works than we know it was really anxiety and if it doesn't than we know that there is some other reason I feel like this. I take 25mg daily for a week and then it increases to 50mg. He wants me to take it for 3 weeks and then go and see him. He told me to take it before bed because it causes drowsiness but I took it this afternoon to get it in my system. I took it at 3:00pm and by about 6:00pm I felt ready to crawl out of my skin or run around the block a million times or something. It was weird. But I felt fine soon after that. I noted that in past threads other's had mentioned being more anxious at first and then getting used to the medication so I hope it works for me.

Future Hope - There have been about 8 times since Thanksgiving that I've gone out to places, My boyfriend's Grandma's, the hairdresser, my grandma's...ect. that I have left feeling fine and got out and onceI was out and where I was going, I felt hot, sweaty/shaky, nauseated and I had bad diarrhea. Ever since those times, and more recently.. i pretty much leave my house feeling kinda well nervous and things go down hill from there. I drag myself to work like that, to the grocery store... it is the worst feeling in the world. That's what happened today when I tried to go to the doctor. I was actually going to see him about this weird anxious feeling I get, and for the UTI as well. WI Mom - I have been sick since I was 15 and i'm now 22. I've always until this point had nausea and now i'm really noticing this anxiety. I've never experienced anything like this before. I've always been kind of a "worrywart" but nothing like this. Morgan- I've felt awful all day and only now, hours later am I starting to feel somewhat better. I like to physcially be home when i'm sick, but it doesn't make my symptoms better. I'm glad your son found relief and hopefully I will too. Thanks for your input and keep your fingers crossed. Round two of trying to see the doctor is tomorrow, I just have to make it... this UTI is awful.

I tried to go to my doctors appt this morning and couldn't make it. My boyfriend had to pull over on the side of the road twice for me to throw up and then I sat in a McDonald's bathroom for half an hour before I could leave, my stomach was so upset. I had to cancel the appointment. Now I REALLY think this has to do with anxiety. I worry that i'll get sick and then I do. This is absolutely horrible. I rescheduled the appt for tomorrow morning. I'll have to drive myself. I also have a really bad urinary tract infection so I can't pee and it burns and i'm just a huge mess. I don't know what else to do besides try and make it to the appt tomorrow. I'm just really upset that this keeps happening.

I've been feeling really down lately. I've had problems with nausea and diarrhea and i've been sick in public places so many times lately that I am literally afraid to leave my house. I feel nervous to go anywhere including places that i'm super comfortable in, like my mom's house. And I'm thinking that because I leave my house with the knot in my stomach and the expectancy that i'm going to be sick that it actually somehow triggers symptoms. Once i'm out somewhere and feel sick, I feel like I HAVE to get home right away. I saw my GI doc last month for the nausea and diarrhea and he gave me Hyoscyamine -- a pill that you let dissolve under your tongue that stops cramping and diarrhea. I used it once and it stopped the diarrhea, though it actually made me feel constipated. Does anyone else suffer from anything like this? Is it possible that my anxiety about actually being sick is causing my symptoms to act up? I don't even know what doctor to go to anymore. I do have really good doctors, but I just feel like there isn't anything else they can do. I know that I have a bad attitude about things right now...it's just so frustrating. I did however, through lack of any other idea, make an appt with my family doc for wednesday. I'm going to show him info i've printed about anxiety and POTS and see if he will give me some sort of anxiety med. I need something and I don't know what else to do.

In the past several months i've had two "incidents" of severe vomiting and diarrhea, kinda like the stomach flu, and I actually had to go and get IV fluids and IV zofran to stop it. The hospital told me that it was the stomach flu, but I think that since it happened twice in the space of several months that it has to have something to do with POTS. Also, in that same time frame i've had several experiences where I will go to eat dinner and feel like I have a serious sensory overload... the lights are too bright, noises too loud and I get awful stomach cramps and diarrhea and usually nausea. That has happened 3 or 4 times in the past month or so, usually when I try and go out and eat or once it was at my boyfriends parent's house. This is so uncomfortable... not to mention embarrassing. I'm planning on calling my GI doc tomorrow and making an appt. I guess my question to you is does this sound familiar? I've always suffered from nausea, but never anything like this.... any comments would be appreciated.