mrsdavidson8605

Hi, I'm just wondering what your actual pulse is when you stand? With me, my BP takes a long time to drop (it usually drops after about 15 minutes of standing) but my Pulse increases at least 30bpm in the first 2-3 minutes of standing...

Hi, Glad to hear things went well for you while you were there. I've actually had a change of plans and am going to drive back (which is better for me than flying!)... I'm glad to hear that Beverly is a good help. I have an appointment already set for October 14th with Dr. Grubb so I guess i'll just wait and see what happens with that.

Hi, I'm kinda at the same point. I have been medication free, so say, for about 3 months. . now that i'm on meds I feel like i'm 10 x worse... who knows. I think we're so sensitive to meds, that doesn't help either. Good luck!!!

Hello, I am on 5 mg twice a day. But I have been taking it a total of 3 weeks (off one week bc I had bronchitus).. I didn't see a difference between generic and the real stuff. Sorry if that was confusing. I was just simply giving both names bc I know a lot of people take generic forms now.. I know they are both the same drug. I really just can't tolerate it. I feel weaker than I did before I was on it. My doc here really has no clue and is just guessing at drugs so there is no real "reason" reason for me to be on it, which is another reason to stop it. Plus it is highly addictive and my doc even told me he didn't want me taking it forever. Doesn't make sense to me but oh well! Thanks for the post.

I try to keep my brain active (sounds funny) but it's true. Sometimes I can't even think of how to spell the simplest words and it is so frustrating. there's no way I could keep a job now and multitask! I'd get fired!!

Hi, Well I am not a doctor but my suggestion would be to at least request the nerve test. I'm sorry, I can't remember what the name of the test is, but they'll know what you're talking about. I was told, for me, that sometimes MS is VERY difficult to diagnose, especially in the early stages. My neuro described it as a "boxing match", you have to go several rounds sometimes before you figure anything out. I had normal spine and MRI's as well and still had the test. Has she had a spinal tap? Most neuros won't do those now bc they're so invasive (unless they have to).... keep your chin up! It's great she has someone fighting for her!

Hi, My only insight with kidney problems was that I had a LARGE AV malformation in my left kidney, which was causing my left renal vein to be dialated. They thought for sure this was what was causing my POTS symptoms, but it's been almost 3 months since my surgery and i've had no change. There is a theory of a connection between problems with the left renal vein and POTS (look on this website under what causes POTS), but not sure if this applies to you. The only reason I even found this problem in the first place was that I was gonig throught he list of things on the website that could be the cause of POTS and the renal vein was on there, so I had a sonogram done, and sure enough my renal vein was messed up. Sorry I can't offer anymore help than that. Hope you're doing ok.

My sister lives in Columbus, OH and is having a baby, so my parents decided to drive there to see her this summer. My husband and I are taking advantage of this and are riding with them (which will save us quite a bit of money).. then we're going to drive to Toledo to see Beverly and then fly home.. I still have an appointment to see Dr. Grubb in Oct but thought maybe Beverly would have insight into which meds to try in combination and maybe I can get some relief before the end of the summer. Has she been a big help to anyone? Just wondering. Also, i'm a little nervous about flying with POTS. How does it affect us?

I feel like I am more revved up, and feel more anxious on Ritalin. I don't feel anything positive from it.. in fact, I feel worse. It's so frustrating bc most of the meds I have tried have made me feel worse.. Has anyone taken Ritalin (or the generic equivalant) and it been a success? If so, what are some of the symptoms it helps with? I'm just wondering if this drug is really for me or not. thanks...

Hi, I wouldn't rule anything out until it has been ruled out by tests. That's my theory anyway. A simple blood test can rule out lymes disease.. i'd say go ahead and do it. I had that test run months ago as well.. What about MS? Sometimes MS can be a tricky thing to diagnose. Have they done a nerve study on her legs? I had that done bc my neuro thought I might have MS. They hook up small electodes to the limbs and test the nerve responses. It's not fun but not really painful. Maybe you should look into having some MS type tests run, just to rule it out. I'm so sorry to hear about her trouble. I hope that she feels better soon!

I can definately relate. I can't handle loud noises (the phone for ex) and bright lights.. stress definately sets me off... heat.. bending down is a big one... going up and down stairs, etc.. sometimes I just have a bad day and have no idea what has brought it on!!! it stinks!! This week has been rough on me. Not sure if it's the new meds, hotter temps (ks summers are a killer) or what is going on... hang in there..

Hi, Man I would do anything to live where you live because i've been told several times to see Dr. Grubb and my doctor is also consulting with doctors at the Cleaveland Clinic. I'm all the way in Ks so it's kinda hard to get there! you're in a prime spot!! Good luck, I hope that someone can help.. I know how hard it is to get help.

Glad to hear that you got some validation!!! That is SOOO important and so rarely given to us POTS people... btw, I also woke up during my colonoscopy.. yeah not fun... Glad to see you back around here!

Hi, I'm sorry to hear you are not feeling well and I can honestly say I KNOW how you feel! For me, I was able to finish college, get married, and start a career before my POTS set in. I was a case worker for a mental health place and worked with troubled kids 9-12 hours a day. I was constantly on the go, in the community, etc... then I got pregnant and it got really bad. I cut back my hours but that didn't help. I ended up having to quit. That was a year ago. I stay at home with my daughter now, and I think that is harder than working!!! It's great that some people push themselves and are able to work, but for me, I know that pushing myself means going to the grocery store, being able to get groceries, and coming home without passing out or feeling like i'm going to. So I understand truly not being able to work and I know there are several others out there who feel the same way. I would agree with what others have said. Start out slow. And by starting out, that may not even mean working, just getting yourself conditioned.... which may just mean walking up and down the stairs once in a day. Just depends on your severity... From personal experience, the WORST thing you can do is nothing. Sitting and doing nothing will only make it worse. As HARD as it is, you have to have a schedule.. maybe just cleaning your room and going for a drive everyday. But something. I hope this helps. I'm so sorry you had to quit school. Just keep your head up. My husband is wanting to go to seminary school and become a minister, but I feel like I am holding him back because of my health.. I struggle with that a lot. I would also suggest the online thing too. Maybe you could take one class a semester or something... just to keep the brain fog at a minimum. I know I have trouble with that!!!!! Good luck! Rachel

Yeah I'm on the generic too.. I feel terrible on it right now... hmm it's such a guessing game. oh well, guess I have to keep trying. thanks for the post.

Well, I found an electrophysiologist here in Wichita, who at least has a clue about POTS. That's a step in the right direction. But he put me on Ritalin (sp?) to try for a few weeks. I was on it at the begining of the month, but had to stop bc I got bronchitus. He said he does not want me to take it long term bc it is habit forming... that doesn't make any sense to me... why start something that is possibly habit forming? He's going to try the Ritalin and Mestion in combination next, bc i've already tried all the meds that they suggest for POTS. He also said something about a study going on where they go in and burn the fatty tissue around the heart.. anyone heard anything about that? ugh.. i'm so frustrated... it's been a year and a half straight of no relief. I'm really feeling terrible. I got bronchitus 3 weeks ago and haven't been able to go back to the Y to workout... i'm really hoping they can find a good combination of meds SOON......

Hi, Yes I have TMJ but i'm not sure if or how it relates to POTS. Sorry. My husband tells me all the time that I grind my teeth in my sleep... anyway hope you're feeling ok.

I've noticed it too.. the hot weather affecting me! ugh i'm so upset bc I LOVE summer time! I love being at the lake, etc... plus, I live in KANSAS! so you KNOW it gets hot here in the summer!

I would advise to talk with the anestesiologist before you go under. I did, and it made me feel a little more at ease. The main thing is to get the point across that POTS (make sure you tell them what POTS stands for, bc there is a disease called POTTS)affects the blood pressure/pulse. That way they will be sure to monitor it extra carefully and have any necessary medications at an arms lenght. I was scared to death before I had to have anestesia, but it was really no big deal... good luck!

Hi, Did you get diagnosed with Minere's before or after you were diagnosed with POTS? the reason I ask, is I suffered from migranes and "Minere's" for a couple years before I was actually diagnosed with POTS. Just wondering if maybe the POTS is what is causing the migrane type of headaches. I'm not a doctor or anything, but I have similar symptoms and NONE of the migraine medicine they used helped.....it's all such a vicious circle of symptoms.. hope you're doing okay.

I just have to vent. I feel like no one understands me... ugh.. I was doing ok (not wonderful, but was able to be up for more than a couple hours without feeling like crap)... then my husband and I had a garage sale last weekend, totally wore myself out, and got Bronchitus and I think now strep throat.. I'm on an antibiotic but it doesn't seem to be helping.. I can't get my fever down either... the last time I got this sick was back in October when we drove to the Mayo clinic and I didn't recover until after the new year... i'm so worried that this is going to be the same way... anyway, sorry to be so negative, but it just stinks to get a LITTLE relief then feel like you've stepped back a whole MILE....

I've had several quacky experiences (some funny, some not so funny)... here's one that always made me scratch my head... One doctor told me, that when I stand up, I need to press my index finger firmly on my wrist, to avoid being lightheaded... I laughed with my husband and said I might as well have my finger GLUED to my wrist bc i'm lightheaded ALL THE TIME!!!!

Thank you for the encouragement. When you were talking about your visit, I had SEVERAL flashbacks to doc visits that went the EXACT same way and I had the EXACT same feeling. I have to just keep telling myself I'm NOT CRAZY and there IS something wrong! you were exactly right when you said some doctors have an ego problem. In Dr. Grubb's book, it talks about how docs MUST be humble and willing to throw everything out the window and start over when dealing with POTS (in so many words). Anyway thanks again.

Any ideas on meds for heart racing? I've tried so many, but would just like to see what everyone else is taking. The muscle aches have seemed to subside for now, the main problem is my heart racing... I feel like if I could get that under control, MAYBE I could start to feel better. BB DO NOT help me.. My BP drops too much. . thanks in advance....

Hi, Sorry to hear you are having a rough time.. I know EXACTLY how you feel. We went to the Mayo in October of last year (drove ALL the way from Ks to AZ with a 4 month old!) ON top of the long trip, I got sick from my friends' kids.. Needless to say, Christmas was HORRIBLE.. but I look back and i'm a little better than Christmas time and I thank God.. Just rest and don't over do it (I know that's hard to do)... Hope you feel better soon!!!!