carlacat

The test I had told you about they were doing on my legs to check blood pressure because I was having such pain at night came back normal. They called today, when the guy did the testing he said my blood pressure was low in my legs and arms when lying down so i sorta thought well maybe thats why my legs hurt at night...but I guess its normal for someone with Pots or just normal. Well at least I know there isnt any blockages etc down there. I guess I can probably write it off as Restless Leg. I'll find out more from my regular doc I guess. Carlacat

I saw Dr. Fouad also and I guess I must have hit her good days cause she was very patient and caring and she took along time with me. I think down inside that the docs are as frustrated as we are cause they dont know why everyone is getting this and they just try things to help us. That diffently is not an excuse for how Dr. Fouad treated you...I would have been fit to be tied!!! I have been to other docs like that and I never went back!!! I hope all had a good New Years and I pray for a cure for all of us!!!!

Well thought I'd let ya know how my doc appt went. The cardo doc set me up for a test(Doppler ultra sound or something like that, cant read his writing) on my legs to check out my vascular activity so we will see. My appt is Dec 29th so I'll let ya know how it turns out. He also said unless something shows up on this test that my reg family doc can treat me as far as my meds unless I have problems then I can come back to him. I appreciate an honest doctor who is not just out to get my money, I have to admitt it was kinda uncomfortable with a waiting room full of older people in their 70's etc..and I was the only young person in there. Makes ya wonder what they think!!!! Till Later... Merry Christmas Carlacat

I did go see a vascular specialist in my area when I was having alot of pain in my arm. They did a test then but only on my arm so we'll see what happens when I mention it tomarrow at the docs. I'll let ya know!! I have alot of pain in my legs and my feet are always cold and my legs fall asleep easy. From my understanding of what my neuro doc told me that the vascular should be ruled out because if there were a problem then the blood would not flow correctly and it would pool in my legs. So who knows!!! Carlacat

I'm gonna see what my cardio doc suggests then go from there. Tests are expensive but if my cardio doc says it would be a good idea then hey..I'm willing to check all things out at this point just to get better. As far as guessing the hollywood star..I havent got a clue. My sons name is Dustin so if you look it up, thats my boy. All Smiles!!!!

My doc says I should see one just to rule out that there isnt anything going on vascular from my feet to my heart cause he says Pots and vascular problems has the same ill effects. I'm gonna mention it to my cardo doc on my first visit and see what he says. I was just wondering if anyone else has ever had this checked out? Thanks PS...By the way, we got word that the movie my son is in will premere here in Parkersburg, WV Jan 12, 2006. I just hope I feel good that day, pop an extra beta blocker and load up on salt that day I guess.

Thanks everyone!!!! I'm very proud of him...

The movie will be out in January called "Bubble" directed by Steven Soderbergh. He is "Kyle" one of the leading actors. Its a series of movies Soderbergh is doing with non-professional actors. Sorry I had to share, I can understand if you delete my post but its about time something good happens when the world feels like its crumbling. I'm so proud of my son, he has overcome alot in his life and he is only 20 so this is a reward for him. Have a great day!!! Carlacat

I have had Pots since 2001 and have to say it has gotton better. I do take a beta blocker and wear compression hose, have tried alot of other meds but I'm very sensitive to meds and alot of them just dont work for me. I went from not being able to stand for more then a half hour to walking three miles a day. I find that the worst times for me when my pots does want to remind me its there is "that womanly time of the month" and for some reason it kicks me in the butt and I have to load up on my salt intake. The last visit to the cardo, he said my blood pressure levels were more evenly when laying down and setting up so that set my mind that I'm gonna kick this thing and I keep telling myself that everyday when I wake up. Carlacat

I'm sorry I lost your number but I want to talk to you about the doctor in Morgantown. Thanks

Hi everyone, I havent been on here for a while. We moved to Vermont then recently just moved back to WV. I would like to find a good pots doc around here so I was wondering if anyone has ever saw Dr. Hoeldtke in Morgantown? I went to Cleveland for my dx but its so far to drive I would rather find someone in Morgantown. I'm still taking my Lopressor in the am and last time I went to the doc in Vermont, he had said that my blood pressure is not going back and forth like it used to so I'm holding out hope that it may start to go away (if thats possible). I do feel like I have improved some but not back to normal yet (normal..whats that?) I was walking 3 miles 2 days a week and I found that the exercise did help with the assitance of my compression hose. I hope all is doing okay and its good to be back.... Carlacat

Hello Its just not the 25 cent raise..its the raise Social security gave me in which I dont get cause they take it for my medicare payment every month 66.00. Thanks to everyone for their help, I will check into all of these. Carlacat

Havent posted for a while but I just found out that I cant get my meds after June. I am getting SSDI and I pay for my medicare but that doesnt cover the six meds I'm taking everyday. I know I cant do without my Lopresser, its the only thing that keeps me going with my Pots. I dont know what to do now but the only reason they are cutting me off the state program is because my husband got a .25 cent raise and social security gave me alittle raise then they took it away to pay for my medicare but I still make too much money for my meds..Makes me sick !!!! Anyone have any suggestions, let me know. Thanks Carlacat

I take neurotin and yes I started out small dosage than went up with time. I am taking 2400 mgs a day and thats aminly because of my neuropathy in my feet and legs that I have but I do admit I do feel better since I've been on it. Carlacat

Thanks all...I wear the knee high compression hose anyways. I know I'll do fine. About the vitamins...I wasnt really meaning vitamins when flying, I meant vitamins to take on a daily basis that may help us fell better. Okay I admit it..I just want a wonder drug. I go to a new Pots doc in June so I'm really hoping he knows something about it. Do you think he would get affended if I emailed him??? Carlacat PS..I will be flying to Vermont, in which we will be living.

I have been reading other posts about flying and I hope I do okay. I will be flying by myself and it is a 1 1/2 hr then I have small layover then another 1 1/2 hrs on the plane. I will take water and keep moving in my seat etc... any other suggestions?? Oh yeah by the way..is there any vitanim that helps you any?? I need to get some B12 but I do take a multi vitanim already. Carlacat

I didnt really like Mountain dew anyways..LOL I'll keep trying the coffee thing..its awful to say but I think I felt better when I smoked a cig. I quit Nov 2003 but I think it kept my blood pressure up. If I'm right I think smoking tightens up your veins..thats probably why. Carla

I would love to know why this is...okay whoever goes to the doctor next..please ask this question. I tried the coffee and it didnt help a whole lot. Maybe I should drink ice tea or Mountain Dew..Really get the caffine buzz. LOL Carla

I do drink coffee in the morning so maybe thats why I feel okay then, so I will try the coffee at noon. I usually wait until about 3:00 Pm before I make more coffee and I do feel good to go til bedtime. I will try the noon coffee tomarrow and see what happens. Thanks Carla

Well here I am finding myself without health insurance and moving next month so I can get insurance. I havent been feeling too bad but the only time I have a problem is right around noon...then my head starts to feel floatie and I feel so tired. I have to lay down for about an hour. Dont know why this is happening and just around that time. I thought it was because I needed to eat lunch and that doesnt help, I even took one of my beta blockers and that did not help. Usually I take my meds at 8:00 am every morning. Does anyone else have this feeling?? Since we are in the process of moving I had to get all new docs in Burlington Vermont which is where we are moving to. What a pain to have everything switched...neuro doc, cardio doc and reg primary doc. My appts are in June and its a good thing cause my meds are getting low. Hope all is doing okay. I saw something about drinking on here somewhere..I'm scared too death to even take a sip with all meds I'm taking. LOL Carla

Just wanted to say hello..will post more later. Carlacat

Thanks everyone for replying. Look stupid me..put my names in the topic area of my post. If I only had a brain....... Carla

I have to go to the dentist Thursday..probably will have to have tooth pulled cause they are not doing any more root canals on me. Anyways..any suggestions or advice?? Thanks Carlacat PS...Took my dashound to vet to have teeth cleaned and he had to have 16 teeth pulled..and I'm afraid to have one pulled. He was asleep though cause they were also de-nutting him. I always said if I ever have to go on Fear Factor...the dentist would be my biggest fear. LOL

I may be able to help some on this. I filed October2002 and got denied, did the reconsideration appeal and got denied april 2003...then the heavy arms come out. I went and got a lawyer, and went before the judge in August 2003 but he had everything he needed but an evaluation done by my pyshiratris(however ya spell that) so I had an evaluation done and last friday my lawyer called and said the judge was going to make a decision instead of going back into court and thats when he awarded me fully favorable. Just be honest and I know what ya mean about the paperwork. Yeak!!! Carlacat

Just wanted everyone to know that my SSDI was approved which makes my financial situation much beter. At least I'll have health insurance soon. I was approved for : Fibromyalgia, neuropathy, Progressive Pots, chronic pain, and depression. What a relief..now when we get the house sold, e can start all over again. Yep-Yep!! Carlacat