hopeful-girl

It is ht eEpinephrine. I always ask for carbacain plain 3%. I do no thave a problem with it. But heck for years they tried telling me it was anxiety. Until I was taken the the ER by an ambulance two times from two seperate dental offices. They finally figured out it was the epi. I havea great dentist now who listens pretty well. It is quite nice. Hey any one have any experience with getting teeth pulled and always gettting a dry socket? I had three more teeth pulled and am gettting dry socket again. I have 8 teeth left in my mouth and I have had dry socket every time. I do every thing I am supposed to yet still get it. It is swful. Night Corina (hopeful-girl

I hated Reglan. Hmm One drug that I could tolerate and did NOT make me sick. How ever it made me very mean and phsycotic (sp?) feeling. I could not handle it more than 3 days. It is supposed to help with nausea and also stomach motility. I wish it did not make me feel so meanand such. I would of loved to of known if it would of helped with my motility and gut problems. Corina (hopeful-girl)

Hi sunfish. OH boy do I understand what you are going threw with the Gastro Pareis. It can be HORRIBLE! I am SO SO sorry. TPN really is not so bad. Have you been on it before or is this the worst it has been for you and is it your 1st time then? I am sure glad you are home with the comfort of your own bed and such. I know it makes me feel better to be home. All the comforting smells and feels and love of animals if ya have them *giggle* I wish you the best and you will be in my thoughts! Corina (hopeful-girl)

I had to change my Mayo date ;-(. Mostly do to finances. I need more than one month to get the rest of the money I may need since i live in Oregon and it is a long ways for me. SO I have another Rochester Mayo question for those that have been. What would you say the average time is that some one stays. I read in the phamplet 3 to 7 business days. Could be longer. I am not sure how to book my flight with out knowing what the date is I will come home. Do I book it with the ability to change the return date? Does anyone have any experiance with this Hotel? The travel lodge. I think 435 16th ave NW. It is in the broshure the Mayo sent. I called and it seems like it would be the ideal place for me over all. Financially and what I would like for amenities. They said they have had a total remodel a few years back. I am just not sure about the area if it is in a decent location. Such as not a bad part of town. Any one know that would be great? I am mostly concerned about the smell of the place. I have troubles with older places that have a mildewy smell. It makes me really, really sick. So the Main Hotel I am thinking of is the Travel Lodge. The other ones are as follows. I would love to hear from any one who have any thing to say about any of these good or bad ;-). Millie's Guest House Alpine Inn Clinic Horison Inn and Suites Best Value Inn Thanks and have a good night Corina

WOW how refreshing to read everyones views and how to keep a positive outlook. I have been on the failed side for a while with positive outlook and it does really suck. So I LOVE to read what everyone has to say . I would also agree that the best policy is honesty with your partner. I think to act as if nothing is wrong and things are good only is a bandage. That is just my oppinion. How eveer dwelling upon it does NO good wither. What I have learned is some times it is better with my man to keep it simple. We are such different creatures in our manners (men and woman) They way we feel think and react. My husband and are are total opposites and we have seeked counceling. It has helped allot so far. We still have our ups and downs. We have been on the verge of splittingoff and on lately. Not because of my health. But because of his unability to be emotional and pay attention to me. How ever the flip side ;-). He does ignores me at times which *****. It always seems like he ignores me when I need him the most. How ever I have learned it is because he shuts down and does NOT know how to deal with it. So for him dealing with it is not doing any thing and shutting it out. Which of course deos NOT work for me nor helps me. So we are learning to keep things simple. And SO far So good. Honesty and openess and good communication about our health I do beleieve is the best policy. I mean what we have is not going to go away completely. So when things get down we need to remeber as "Be Still" commented to try to stay focused on the PURPOSE and the HOPE. So I believe you find some thing that you love and helps give you hope and stength. For me I know when I am at my worst what helps keep me be positive is my daughter and my doggies. I have 4 dogs of my own and I have 2 foster doggies. They are what help keep me strong. I have rat Terrier dogs two that weigh 35lbs and the other's are toys and are under 12lbs. They are amazing animals. When I am sick. They all cuddle around me as they are trying to take care of me and make me better. They know I am sick. It is also SO refreshing for me to take in a foster dog that is scrawny and shy and skiddish and all the crappy stuff you can think of. I give them my love and I just work with them and nourish them and that helps me to watch the transormation that they make. It is an amazing feeling to take a foster that is down in the dumps and turn them around and watch get better. It gives me hope that maybe if I do that I will get better too. Everyone here is So wonderful. I am SO thankful and SO appreciative to have this board. I know I do not post allot. How ever I read allot and it is also everyone here that helps me stay strong. So I give THANKS to all of you here and pray that we all have strength and courage to conquer our beasts ;-). Take care Corina

Having Gasrto on top of pots, Neuroathy etc...............really gets ta me after a while I do not handle the starving stuff very well. I mean sometimes I feel like I am literaly staarrving to death. I would rather eat someetthing light and have it come baack up than starv. Night all

I am not sure. I am seeing a Gastro and NEUR. I will go with no expectationnsss aand lots of patience LOL Once every thing is done and set in stone I will let ya know more details. Night ALL!!

It is amazing how much a doctor can really make in a persons like. I have done so much fighting this last year with insurances and doctors. I had a Neuro and Gastro that were let me put it as nicely as I can here, like JERKS, My gastro even though the tests showed Slow gut motility, he had me flagged for possible eating diorder, Becuase I was a bulimic many many years back. Like over 12 yera ago! So he has me go threw a special eating diorder evaluation. That is when I decided I would do it to appease him and I would also seek a new Gastro. That was a motnh ago. The evaluater laghed at me. NOT in a bad way. AND said what the heck are you doig here. So now even though I am all clear of any type of eating disorder he thinks I need further personality testing! FOR WHAT!? FOR HEAVENS SAKES!? Well While that is all going on. I had called the Mayo again and asked how much longeer it may take to be seen. Well they gave me the same old song and dance. Well there is such a long waiting list and it could take up to a year. I said well that is what I was told 4 months ago when I called. Actually that is what I am told every time wheeen I DO CALL! So I got this NEW GASTRO and I LOVE him. He is very understanding, patient, listens, ets... I just had my second visit with him on Monday. He asked me.............HAS any one of your doctors ever spoke to some one there in your behalf. I said no. Wednesday I get this Phone call from The Rochestor Mayo clnic They were calling me to set up an apointment with me I am still in shock! WOO-HOO My apt. is May 9th. Any advice from anypne would be great. What to bring, not to bring, etc........ Are Mayo shuttle free or cost money? I have such an andrenalin surge. PINCH ME SOME PNE LOL!! BY eveyr one Corina Hopeful-girl

Hi. I am very familiar with the blanks stares! Or I as I also call them locked stares. They last for seconds and I am sure have lasted nevr lasted longer than a minute. One of my Doctors said it was a type of minor seisure. As for the twitching it usually means i need more magnesium. I also get really bad calf and feet cramps and for me that is a sign of love potassium. I know this really ***** and can be scary. Especially when it feels like it will not stop. it is more annoying to me than any thing. Cheers, Corina (hopeful-girl)

Hi. They sx sound all normal to me for POTS and also Neuropathy. I am on a j-tube from all this. I have Gastro Paresis. So allot of the sx you are feeling are probably a cause of POTS. Mine is. I throw 90% of every thing up everyday. I have been on a j-tube since last June. I have had horrible troubles with my tube feedings. I got and get severe dumping syndrome. What is odd is I finally did re search my self and tried some over the counter products for tube feedings. I found that the Generic Safeway brand of slimfast does not give me the dumping syndrom like every thing else. My dieticis says it could be the osmolality rate in it. Not sure. How ever it is nice to finally find some thing that I can put threw my tube that does not make me feel like I want to die. I still have some troubles. But hey it is a level I can tolerate. I understand about the LOVING food! I have always loved food and I do not know how to completely give it up. Any one got an answer for that one? i was actually thinking of asking my doc if there is any thing that will take my cravings for food awya and then I would not careif I ate or not. I am nauseated all the time and I also feel like I am starving all the time. Which is why I crave food even though I am SO nauseas! All I know is once a day I have to eat even though I know I will throw it up. How ever I eat things like mashed potatoes and gravy, or ice cream, or tomatoe soup. Things I know will come up smoothly. I sure would LOVE a salad right now. But it would choke me to death. I have troubles with throwing up. Food gets stuck in my throat. **** I told my husband the other day to just call me the puker girl. I throw up every day. Whether I eat or not. And I swear the dry heaves are worse than throwing some thing up. Then this makes me more potsy. ARGH!! I totally symapthise (sp?) with your sx and loving food.........................I do not think I could never eat again! take care Corina Hopeful-girl

For years I maintained my wieght about 118 to 122 I am 5'1". Then I quit smoking when I was diagnosed weith moderate Emhysema. Then I gained 10 lbs by just quitting smoking. I had been trying to watch waht I eat I like being small and muscular. I do no tlike being over weight or to skinny. How ever then last Decemebr I started getting this GI stuff and was diagnosed with gastro paresis. My low weight I got down to was 97lbs and very malnourished. I felt like I was going to die. To those of you who have food aversion and hate it. I WISH I did. My problem that I am strugggling with is even though I can not keep food down and I am SO SO naseated all the time. I still have a strong appetite and want to eat. This has been a HUGE emotional struggle for me. How do you just quit eating? I feel like I am going crazy with it. I wish I had no appetite than it would not bother me. Corina (hopeful-girl)

I was perfectly fine until I over dosed on cocaine in 1986. Yes I was the bad party girl. But my life was NOT so pretty growing up. I never touched drugs after that. How ever it was after that I started having POTS episodes and they also told me I had a heart mur mur which I never had grwoing up. Took them basically from 1987 aproz 2001 to diagnose me and even with diagnosis doctors are still not always willing to listen. So I don't neccassrilly blame it on my self. I guess I kinda also look at it like what did I do to deserve this!? Did I do some thing so horrible that my karma should come back on me 10 fold! But then again I would never wish this upon anyone. And I think I am correct on saying I think all of us would never wish this upon any one. We are so connected mind, body, spirit. One falls apart and the others seems to go with it. It is so hard to keep a positive outlook and not look for reasons and answers and the what ifs? But I am learning from my son and from me that we can what if all we want and it still does not change any thing. My son has crohns disease also. He has had it since 2001. Talk about what if's and why's? Whew I was SO mad. I almost lost him last year twice. He spent 4 months in the hospitol and lost 2/3rds of his colon. I remeber thinking GOD why? WHAT did my son do? He is a good kid he would never do any thing to hurt anyone! So with these experiences i have given up with the what if's. I just dwell with the I can't do this anymore, I do not want to live like this any more, and I just want to give up. But I CAN'T. So I am here with everyone trying to get threw each day the best I can. Just my 2 cents ;-) Corina

Here is a link that seems to make sence. http://www.mayoclinic.com/health/autonomic...ropathy/DS00544 Corina (hopeful-girl)

How do you do a blood test volume? I should ask what is the test called and what kind of doctor does it and can I ask any docotr I see for one or is it a specialty test that only some palaces do it? Thanks Corina

OK Now wow, wow, wow. So may great topics today I am relating to all of them LOL Yes me too. And because i have gastro paresis I always vomit wither during or after excersize or both. Excersize makes me feel like crap. All my friends feel energized and pumped and I feel weak and very ill. But i figure better to excersixe and be sick then lay around and be sick. but I only excersize on my ok days. I never have good days anymore Ijust have ok days and that is when I push my self. But I do know in the long run of things. It is better to excersize than not at all even thought it makes me sick. Cheers Corian (hopeful-girl)

Hello. I have ac ouple quesyions or justy maybe one LOL Sorry I am having abd day and I am on overload and am on a piutty pot today. But it gets me thinking at times! 1. What are names of Speicality clinics out there that deal with ANS? This is what I have come up with. a. Vanderbilt university b. Mayo Rochester Minnesota c. Cleveland, Ohio (dr. Grubb) I have got my insurance to approve of me going to the Mayo Clinic in Rochester. But the Clinic says it could take up to a year to be seen. Can any one give me other information. Such as other clinics, Dr's names, phone numbers and locations etc....... I am thinking I would like to try to find a place I can get in sooner than later. Any information would be very much appreciated. Thanks for being here Corina (hopeful-girl)

WOW second great post today I relate to also LOL I do get the exact smae thing. And it is so strange to say what it feels like. But it is very bothersome for me. I have ahard time also between the transision from daylight to night time. Do you experience that at all too? Cheers Corina (hopeful-girl)

Hi Evie. That is exactly what I experince. So you are not alone. I some times think I never fully black out because honeslty I am SO afraid to black out and loos conciousness (SP?). Maybe because i am afraid i won't come to ;-). Not sure on that one. But it is very scarey. So thank you for that post. It really does help me knwoing that other experience the same things. It is terrible because I sure do not wish ill health on eveyrone. But it sure does make me feel a little less crzy ;-). So thank you for sharing! Corina (hopeful-girl)

I alsao have serious mood swings. I get to overwhelmed and over stimulated anf I end up flying off the handle and I can't handle things well. I have gone off on a raging rant with my daughter when she pushes me to the limits. I end up being like the kids having the temper tantrum LOL I HATE it and I am aa where of it. I can apologise afterwards but I say hurtful thing some times such as I would be better off not around. Stuff like that. I just feel like this HUGE burden and why be around. I feel like I lost my mechanism to deal with things and I get so confused easy. I can not follow long converstationsa nd I can let people twist thingson me and such that makes me really doubt what I just thought or said. OH **** here I go off on my little typing sprees LOL I just want to say I really relate and you are not the only one. And I am gald this was brought up because it is nice not to feel crazy like I am the only one! Thanks for this topic Corina (hopeful-girl)

Hello Baby boy. Mine varies from day to day. Some times I have none. And some times I get what I cal PVc and Pac storms. I had miss beats before in the past but it was just off and on and I really paid no attention to it. Until I have a bad Storm about 2 years ago. I went and seen my cardio and they set a time to place me on a moitor. My doctor called for a 24 hour monior to see what was happening. Well while they were hooking me up I was having them non stop and the guy who was hooking me up called my cardio right away and they monitored me there for an hour. I was having them every couple seconds. They placed me on a 72 hour monitor. After I wore that she told me I had serious pvc's and some pac's. How ever they were not life threatening ones. How ever they sure feel like it ;-) This lasted two weeks straight and it put me down. She prescribed Flecanide (sp?) for me. I never ended up taking it because it is very serious medicine and can cause sudden death. SO of course that freaked me out. My bad episode lasted 2 weeks straight. Other than that I get them off and on and some times I will get them all day and that puts me down. But I remeber that she says they are NOT life threatening so I do every thing I can to relax and do things that help keep me relaxed because it is still very scarey. I know it is hard not to worry when they are so strong. I just had a pvc and pacs storm here recently that lasted 5 days. And when i get them back to back all day every few seconds or minutes it really tires me out and makes all my pots symptoms even worse. But it finally subsided on its own. My cardio says does not know why mine happen so she calls it idiopathic. We have not been able to relate stress to it or any thing really. Best wishes Corina (hopeful-girl)

Thank you Sophia and Morgan for that. I really was feeling bad! I am one of these people I just talk and I am so excited to find this board and open up and come out of my shell. So this was and is a new adventure for me. By doing so I hope to be able to become stronger and maybe contribute some thing back too besides gaining more strenght. I so far LOVE this board and am SO thankful for it. I think for me it has and is becoming a great part of my support system. Cheers Corina

Hello. Oh I agree Doctors are NOT perfect and they will make mistakes. Heck that is why I would never be one. I woul dmake way to many mistakes LOL I have a alot of respect for Doctors and what they do and know. Actually I have more respect for nurses LOL They do really all the work and get to know the patent better than the Doctors IMO I could never do what these nurses do. I would be so SCARED to take some ene elses life into my hands ;-). Especially if I had to deal with some one like me LOL I do agree that when I visit and if it is bad day I am frustrated and tend to babble more ;-). SO I do take that into consideration. Because I know I am not always accurate my self ;-). SO great post Kudos and I agree I do have to keep it professional and I will. I just use my support sytem for my unprofessionalism so I can stay calm when and where needed *giggle* Corina (hopeful-girl)

I truly apologize I never meant for this to be a debate like that. I just want that to be clarified. I do feel like I caused a problem here since I stated my husband had the addcition and it is a problem for me. That is all I meant it to be about! I was not meant to be a debate about porn! I hope my apology is accepted. I did NOT mean it any other way! Sincerely, Corina (hopeful-girl)

Woo-Hoo Me too LOL I am an ebay addict LOL. I LOVE to accesories more than I ever have. So on really bad days when I just wan tto lay there and do absolutely nothing I get up and shower and accesories LOL It does make ya feel good doesn't it? I may still be my normal self on the insided but at least my spirits are a litte higher.

Hi Sorry I can not be of much help. Talk to your Doctor. I deal with Bradychardia at times normally. I have had a reaction to a med before that lowered my heart rate and the funny thing is the Doctor found it wuite odd. but hey I am quite odd LOL My son has migraines and that is the one he takes. It helps him. But he has not symptoms like that. Do you take a preventative? I only ask because. A few months back they placed Ryan (son) on Propanolol for prevetative. Of course I questioned thi sbecasue I new what it was used for normally and thought it was odd that they use that for preventing migraines. It worked really well for him. Not so much at first. He had to increase the dose a couple times but then it worked great. it was to bad too. Since he is in a checmical dependancy outpatient treatment Propanolol is on the NO list so he had to stop taking it. Kinda weird I thought. OH well once he is done if he needs to he can start back up on it. Take cate corina (hopeful-girl)