Jump to content

metoo

Members
  • Posts

    36
  • Joined

  • Last visited

Everything posted by metoo

  1. 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!
  2. 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!
  3. 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
  4. Hair Stylist ! I know this one from experience.The clients get really scared when you pass out while doing their hair!
  5. 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
  6. The service is thru Life Watch..I have copied and pasted a link to their website.I hope this helps. http://www.lifewatchinc.com/
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. Hello,Dr. Fealey at the Mayo told me to take 1 to 2 coated full strength asprins a day to lower my brain set point temp.I find that it is helping some.Before I could not stand to be out in the heat for more than a few mins at a time but I can stay out longer now.Something to ask your doctor about anyway! Melanie
  17. Hello,I just started taking beta blockers a week ago.I am currently taking Nadolol 20 mg 1 x day but supposed to start 2 x day tomorrow morning.I have been very fatigued and weak since I started taking this,even more so than I already was so I am concerned about adding another pill daily.I am still having very rapid heartbeat and really can't tell that they are doing anything other than making me tired and constipated!I think I actually feel worse now that I am taking it.Is this normal?Will the increased dose help my HR more?Am I just expecting too much too soon?I know thats a lot of questions but I am really hoping that this med helps and don't want to give up.Thanks,Melanie
  18. The link below will take you to the list of Dr names in the autonomic clinic at Vandy.There is also links on the page to current research trials and other info.They do have several trials currently,if you click on patient infomation link it will take you to a form to email to see if you qualify.I hope this helps.Good luck! Melanie http://www.mc.vanderbilt.edu/gcrc/adc/faculty.html
  19. Hello,I have this problem also.Dr. Fealey at the Mayo recommended 1 to 2 coated full strenght asprins a day to help with temp regulation.I just started taking them yesterday and it is cool and rainy here so I can't say if it helps yet.Dr said it lowers the brain set point temp. Hopefully it will work..I'll let you know.BUT...he also said it can cause bleeding ulcers if you take too much and if you already have ulcers it makes it really bad. Anyway,something to talk to your Dr about..it might help. Melanie
  20. Dawn,Where did you find the article?Thanks,Melanie
  21. Sue,Did you go thru the appeals process?My mother in law was just approved but she had to appeal the decesion, get turned down a second time then hire a lawyer and go to court.She said the court was no big deal.Just her,lawyer and the judge was in the courtroom and the judge just asked her a bunch of questions and told her she was approved.The whole process from the time she first applied to getting approved at court took about 1 year.It is my understanding that almost everyone is turned down the first time.But,I personally know 3 people who applied due to mental problems,Bipolar,and all were approved the first time.Melanie
  22. Hello,I am going thru the process right now myself.I just got home from an appt with a disability doctor that SSDI sent me to.What a joke!When I told him my DX was POTS,actually saying the whole thing,he looked at me funny and said"What?" so I told him again.It was very obvious that he knows nothing about it.So I was trying to explain what happens when I stand and this fool asks"So if you get dizzy,lightheaded and feel as if you're going to faint when you stand,what do you do?"I told him I sit down or fall down.So then he says..."So then all day you stand up and sit down over and over?" I just don't think he got it.Then he had me stand up and immedately took my BP and HR.They were 154/107 and 114.He said you're a lil high right now,so I tried to explain that it was that way every time I stand.Oh well,it's just a process I guess.Just wanted to let you know you are not alone in being upset with SSDI right now.Good luck!
  23. I found a very informative website that has info on what can cause POTS along with other interesting info.Here is the list and link to the site: http://home.att.net/~potsweb/POTS.html This page passes on the latest theories and accepted "facts," but does not guarantee that better "facts" and theories will not make some items on this list obsolete in the future. 1) Viral and bacterial infections that damage the autonomic nervous system. Patients who develop POTS due to an infection, with no deeper underlying genetic cause, have the best prognosis for a spontaneous recovery over time. 2) The development of POTS in women after childbearing is very common and may be due to changes in blood volume during pregnancy. 3) Exposure to toxic chemicals which damage the autonomic nervous system. This group includes adverse reactions to prescription drugs. Some Gulf War veterans have developed POTS like symptoms after being forced by military leaders to take inadequately tested experimental drugs and being exposed to small amounts of nerve gas. 4) Genetically inherited neurotransmitter disorders, including disorders of catecholamine production and release, such as Norepinephrine-Transporter Deficiency. 5) POTS can be caused by peripheral nerve damage due to rapid weight loss, diabetes, and alcoholism. Doctors at the Mayo Clinic have identified autoantibodies specific for nicotinic acetylcholine receptors in the autonomic ganglia, which are believed to cause of approximately 10% of all POTS cases. Doctors at Vanderbilt University believe that some POTS cases are caused by a partial sympathetic denervation, especially in the legs. 6) POTS can be a phase in the gradual onset of Shy-Drager Syndrome. 7) Damage to the vagus nerve. There have been documented cases of patients developing neurally mediated hypotension and POTS after undergoing radiation treatment to the neck. 8) A mixed bag of less common potential causes, both genetic and acquired. Ehlers-Danlos syndrome, a connective tissue disorder which permits veins to dilate excessively, is now an accepted cause of POTS. Essentially anything that can damage the brain stem and important autonomic nervous system structures can cause POTS.
  24. I have been trying to find info on how many people wordwide have POTS.I had never heard of autonomic dysfunction at all until last Nov.It seems even most doctors don't know about it.So is it rare or just grossly misdx'ed?Just wondering,Thanks
  25. I know exactly how you feel! After years of being told by my then PCP that I was depressed and each visit ending with him handing me a script for anti depressants and not taking me seriously I quit going to the Dr for almost 5 years.I was just so fed up.I found a new,wonderful Dr who believed me but didn't know what was going on so he started sending me to all the specalist he could think of.First was rheumy...sounds identical to what you went thru...pushed around on all my sore spots unmercifully,said Fibro and walked out.The to Neuro who said MS,then no its not...then maybe....gave me a script for Methadone along with a few others.I didn't realize what he had gave me.I came home and no one in my town would fill the methadone.At this point I still did not know what its main use was so I couldn't understand why all the pharmacist wouldn't fill it and were acting so strangely toward me.When I typed it in on a search engine I got so upset.No wonder all of the phar acted like I was crazy,it is mainly used for cocaine addicts.I did find one article about how wonderful it is for pain but the side effects were crazy.Basically it stays in your liver for 7 weeks after you stop taking it and is highly addictive.The article stated most people who stop taking it have to be hospitalized to get over the withdrawl.So on my next visit I tok it back to him and told him I didn't feel that this was right for me.He got mad because I didn't have it filled and told me that he thought my problems were all mental!My husband told him if that was what he thought then have me commited to a psych ward ,basically called him a quack.My husband is a big man...6'4 340 lbs all muscle ..dr started sweating..you could actually see it and stuttered...it was so funny.I am so lucky to have him as a advocate for me.Anyway...I think Dr's get a God complex.They are afraid to admit that they do not know the answer and if you have the nerve to question them you fall from grace and must be punished immedately.I am sorry you are having so many problems and I hope you find some relief soon.Melanie
×
×
  • Create New...