metoo

Hi,thanks for the replies. Mayo did put me on the beta blocker.That is the only med I take for POTS but I do have others meds that I take for various things.I will not stop taking those as I know they help what they are prescribed for.Even though I did not completley agree with this new dr have tried to reduce the dose as he told me,I am more tachy than usual and feel awful...also I have tried the exercise bike.I just can not do it.Maybe if I was still on BB I could ride the bike,but the combo is just too much. I am trying to do what he said in hopes that he is right.I would love to feel better.I just don't think this plan is right for me.I am going to try to tough it out a little longer to see if it gets better.Thanks!

Hi,I travled to Mayo last April where I was dx with POTS after years of illness.As most of you know Mayo is not the greatest with follow up care,they are wonderful to get everything figured out but once you leave it;s hard to get any additional info from them.I understand because they are so busy. Mayo recommended Nadolol,my PCP would not consider changing it even tho I had major low hr...in the low 30's constantly along with other bad side affects.He did cut the dose in half. I wore a 30 day event monitor.It shows hr ranging from 30's to 170's.There were numerous episodes of sinus arrythmias,tachycardia,braycardia,PAC,PVT and SVT.In the 30 day period it auto recorded 115 events. So I was sent to a cardio who specialized in the electric part.He said,based entirely on the 30 day monitor report,that I do not have POTS! He said I had CFS and possibly sleep apnea.I told him I had no trouble sleeping other than occasional insomnia,do not snore and once asleep never wake up during the night. I asked him if he is saying the Mayo mis dx'ed me...he said no he would never say that.I asked what exactly he was saying then and he said I had a mixed bag.Well ,I knew that! So then I asked about all the hr stuff,he said "oh thats not that bad...it's nothing to worry about".He told me to do a seach for CFS and see if I didn't agree with him.I did...according to CDC website I do not meet the dxing criteria,it's a list you must have 4 or more of the symptoms and I don't. His course of action...stop taking all meds and ride an exercise bike every day...he said in 6 weeks when I come back for a follow up he expects me to be better.WOW! So...what do you all think? Thanks!

Hello,I have been reading the post on SSDI.I have been denied twice and am awating my day in court.My lawyer feels certain I will be approved based on one thing.....Arrhythmias.When I was filling out all the paperwork for both the initial claim and recon I focused so much on POTS and how it affected my everyday life but really did not go into the specifics of what POTS actually is.I trusted that somewhere along the line someone would know what POTS was.My mistake. Even tho POTS is not on the list of disabling conditions that are "supposed"to automatically qualify,frequent chronic arrhythmias of any orgin or cause is listed.I never knew that being tachy is considered an arrhythmia until my lawyer mentioned it and I did some research.An arrhythmia is any disorder of heart rate or rhythm. I had printed the overview of POTS and symptom pages from this website to give my lawyer so he would have a complete understanding.I also told him of the trouble people on the site are having getting approved for disability.He feels the most important thing is to focus on the arrhythmia aspect of POTS when filing as it is listed in the SSA book of disabling conditions. Everyone here may already know this but I wanted to share just in case it may help someone.Melanie

Hair Stylist ! I know this one from experience.The clients get really scared when you pass out while doing their hair!

Hi,I went to Mayo last year.Have you checked their web site?There is tons of info there. I have copied and pasted the link to lodging,it might help you. http://www.mayoclinic.org/travel-rst/lodging.html Just my experience...I made reservations at the Red Carpet Inn.By the time I flew half way across the country,had 3 layovers and made it to the hotel I was completely exhausted.The hotel was AWFUL!!!!! It was cheap and did have a fridge and microwave but the whole place had a very unpleasent odor.I am very aware of smells so I am sure that made it worse.The advertised breakfast is a box of assorted donughts from Wal Mart and coffee.The pillows were plastic and uncomfortable.Also I was on the second floor and there is no elevator. Having said all that...I was way too tired to care when I first arrived.All I wanted to do was lay down somewhere...anywhere...so I didn't fuss.I just did not have the energy to try to find a better room.I was there for over a week so I made a trip to Wal Mart and bought massive amounts of Febreeze,air freshner ,pillows and cases.I would have saved money by staying in a better hotel. I hope this has helped.I know it is a huge undertaking to make the trip.But...from experience...be comfortable even if it cost a little more.You are sick or you would not be making the trip.Mayo will wear you out mentally and physically so you will need to be comfortable where you are stayingAsk LOTS of questions if you are making reservations...make sure they offer what you need.Have a good trip.I hope you get the answers you need,Melanie

The service is thru Life Watch..I have copied and pasted a link to their website.I hope this helps. http://www.lifewatchinc.com/

It is set to auto record if the hr goes too low,too high, pauses...basically everything that can happen.There is a button I can push to manually record but it has always auto recorded before I get the button pushed.Then it starts beeping.I have been so far down in this POTS hole for so long I am willing to try anything that can hekp the doctors understand and hopefully help.It is documented by TTT that I am getting progressively worse over the last year since being dx'd.I am not sure how much lower I can go...I'm pretty sure I've hit bottom and am trying to claw my way out!Thanks for your support! Melanie

Hello, My doctor currently has me wearing a 30 day event monitor.I think he wanted to know if I was being honest about my symptoms!I have wore it now for 3 weeks.It has auto recorded on average 15 to 20 times a day.I brush my teeth...it goes off.My hr has ranged from 227 to 32 bpm. It has made me more aware.I try to not think about what is going on inside my body and keep a positive outlook but it is hard to ignore this infernal machine beeping all the time.Also my family is more aware of it.My husband has been wonderful and tries really hard to understand this illness but now every time it starts beeping he thinks I need to crawl into bed and never come back out!We were going to visit my Mom,which is a treat for me to be able to get out of this house,I walked to the car...it was beeping.We had a argument,he wanted me to go to bed,I wanted to go!It seems since I have this on the ONLY topic up for conversation has been my hr.I can walk up on my family talking...and guess what its about...I'll be glad when its over and life is back to normal for me.I guess it is good in a way because my father in law thought I was just lazy and nothing was wrong with me...he seems to understand better now anyway. Anyway...sorry to ramble.If anyone reads this and has had this done how exactly did it help the doctors?Thanks for any input.Melanie

Hello,I wanted to post to thank each and every person on dinet.I do not post as often as I would like due to being deep in a pots hole I can not seem to crawl out of.However I try to find the energy to read post at least every other day.Often I want to reply but just can't sit here long enough to do so.Heck,even if I could reply I don't think I would add anything helpful as I don't understand this disease.All I can offer is my support and understanding of what we all go through.I think about you all and include you all in my prayers each night.When I have a question or concern,even tho I dont post often,I always get several helpful replies.I just want to express how much I appreciate that.Hopefully some day I will be better able to reply to post but until then ..Thank you all for being there!Melanie

Hello,I haven't posted in quite a while.I have checked in from time to time when I felt up to it to read post.I keep you all in my thought. The majority of this post will most likely be a vent so forgive me ahead of time.I really need your all's advice!I'll try to keep it short and to the point. After years of being sick I went to Mayo last April and was dx with POTS.I started taking beta blockers but do not tolerate a high dose well.It slowed my heart down too much so I am now taking 10 mg 2 x daily. I have gotten so much sicker in the last year.Nothing seems to helpMy bp and heart rate are dropping very low and I am passing out..My cardio did a second ttt to see what was going on and it was worse than the first one!I am not sure about the bp but my cardio said it dropped'extremely low'.I know my hr dropped to 32 bpm right before I passed out.The last thing I remember was the doctor shouting to the nurses to stop the test then I woke up with my feet in the air!The nurse with me kept saying she had never saw anyone react that way to the test before.I can not walk to my kitchen without becoming extremely sick.Even sitting for more than a few minutes at a time I get really bad.I get hot,sweaty,shaky,nauseaus and feel like I am going to black out.As soon as I lie down it starts to go away. They have also done a 24 hr heart monitor which showed wild swings in hr.It ran from 43 bpm to 158 bpm.I had a stress test done this week and they say my heart reacts very abnormally to stress but I don't have the full report back yet so I am not sure if there is a blockage but I really don't expect there to be one. My cardio is considering putting me on Proamitine but he says he is not sure if it is safe for me,what the dose should be or how long for me to take it.He would prefer I travel to Mayo again.Dr Fealey told me if I had any problems he would be happy to do a phone consult with my drs here so I don't see going back right now.I really am not up to making that trip again. I have lost all faith in my cardio dr.His office actually called me after the ttt and told me that the test was normal other than the fact that I vomited during it and he didn't need to see me again unless I had futher problems.I asked the lady very nicely if she normally vomited when merely standing!She decided that I needed to talk to the RN who told me the test was abnormal and I needed an appt.... I am staying hydrated,eating lots of salt,wearing compression hose...everything I have told to do.Am I just having a very bad spell?is there anything else I can do?Thoughts,suggestions,comments,prayers...I am open to all.Please help me.Melanie

Hello,I haven't posted in quite a while.I haven't had the energy to sit up in weeks.I had been taking Nadolol 20mg 2xday.I ended up going to the ER by ambulance a couple of weeks ago.My hr was in the 40's,my nails had turned blue,pressure and tightness in my chest,I thought my heart was going to stop.I was dehydrated as well but I am drinking lots of water and gatorade so I don't understand how I could have been.My husband had to take a week off work to take care of me.Since then they have cut my beta blocker in half,for the last 2 1/2 weeks I have been taking 10 mg 2xday but my hr is still right around 50.I can't breathe and have severe chest pain and pressure.Also I have a very irregular heart rythm,my PCP called it PVC.All I want to do is sleep.I have been sleeping at least 14 hours a day,sometimes more.I am having a 24 hr heart monitor tomorrow and a chemical stress test next week and the seeing a cardio the first of Nov.Does anyone have any suggestions I can share with my doctors?I live in a very small rural town and it seems no one here knows what POTS is much less how to treat it.I want to quit the beta blocker completely but they seem to feel that will be dangerous,I say it can't be any more dangerous that what I am going thru right now.I just needed to vent a little and not feel so alone in this.Thank you all for being here,Melanie

Hello,I am having a weird new symptom.I hate to run to the doctor just to have him tell me there's nothing he can do so I thought I'd ask ya'll if any of you have ever had this and if it's normal with POTS.I went to the grocery with my hubby Sunday afternoon,just picking up a few items.I had been feeling okay for me,which is never really good but just wanted to get out of the house for a while.Anyway,about halfway thru the store I started feeling like something heavy was sitting on my chest,very short of breath,nauseated and very lightheaded.This has continued.Even lying down I feel this way.I have not been able to eat since Sunday due to all of this.The store has one of those bp /hr machines so I checked mine,my bp,which runs high ,was low I can't remember the exact number but was surprised by it.My hr was 63 bpm.I can feel my heart beating very hard,like it is struggling.Is this normal or should I call the dr? I was dx in April with POTS,fibro,Sjorgen's.I am taking 40 mg of Nadolol daily.Thanks

Hello,I had been misdiagnosed for almost 20 years!Finally I found a PCP that listened and he sent me to have every test he could,then specialist.My Neuro was completely at a loss so he called Mayo Clinic in MN,they were the first to mention Dysautonomia.I waited almost 6 months for an appt at Mayo.They did a tilt table test the very first day,every test I had after that the staff performing the test mentioned the TTT and how I did on it and went out of their way to help me so I knew I had already been dx with POTS.Most PCP do not know a lot about POTS and I personally know a few doctors who would rather write you off as depressed than admit they do not know something.It is a struggle for most to be dx because of the lack of knowledge.Melanie

Hello,I get this too.It has been all over but right now it is my legs that are the worse.Before being dx with POTS the doctors thought I had MS and done all sorts of test.They did find one lesion on my brain but that does not dx MS.I thank God everyday for that!Dr. Fealey at the Mayo Clinic told me that numbness went along with POTS,my PCP says it does also and changes the subject every time I complain about it.Does your numbness burn?I feel like I have scalding hot water running thru where ever I am numb.Keep me posted on what you find out please.Hope things get better for you soon,Melanie

Hello,my dx are POTS,Sjorgen's and Fibro,among others.Here is my problem....for the last week or so I have been waking up several times a night with severe painful burning in my legs.It also happens during the day.I have tried sleeping with a pillow between my legs,on my side,on my back and it still happens.I told my PCP about this,he admits he knows very little about my dx and is just going by the Mayo recommendations,I am the only paitent he has EVER had with POTS...BUT he says this is related to my POTS and changed the subject.He really is a great dr and is trying to help,I just think he is at a loss most of the time. Also,I am currently taking 40 mg Nadolol daily and it is not controlling my HR and BP.For the first month or so it seemed to work but now I am getting several periods thru out the day of rapid heart rate and dizziness.He had talked about increasing my dosage but is hesitant to do so,again he is going strictly by the Mayo recommendations.He is attributing it to the hot weather we are having and wants to wait until fall when it is cooler to see if that helps any before making any changes but we are several months away from that.I do not go out in the heat at all because it makes me sicker.How can it be heat related when I stay inside in air conditioning all day? Has anyone had this type of burning and if so what helps?Any advice on the meds?Any ideas I can discuss with my PCP would help! Thanks,Melanie