10 years later...back again.

[firewatcher]

Hello everyone. 10 years ago, I was diagnosed with POTS (hyperadrenergic tendency type) at Vanderbilt University. My condition has waxed and waned and flared up during the years, but mostly improved. Two years ago, I was frustrated with my progress and did the Levine Exercise Protocol for POTS. It was difficult, but possible and I almost ditched my POTS diagnosis. I was excited at my progress, but my local doctors in Atlanta were not, and were very discouraging, so I stopped...and things got worse. I thought that if I ignored my issues (like they did) and did not bother to treat it, it would go away. It did not. I have also been hit with almost daily migraines, and now perimenopause issues, so I am trying to get back to where I was two years ago.

Anyway, I did a very adolescent thing: I ignored my conditions. I denied my diagnosis. 

I was so tired of wearing this ****** diagnosis like some merit badge, that I pretended like it did not exist.

It makes it difficult to find doctors who will treat me, because they've never heard of it and don't have time to familiarize themselves with it, other than a blurb on Medscape...they all stop at the word "benign." I still do not have a "treating" doctor for my POTS: the local cardiologists say that a neurologist needs to follow it, and the neurologists say it is treated by cardiology...forget family medicine.

So in frustration, and seeking understanding, I am back.

[MomtoGiuliana]

So sorry things got worse for you.  For me, hormones definitely seem to play a role.  I am also dealing w perimenopause and I am sure it is causing some increase in symptoms.

[HangingByAThread]

Hi Firewatcher,

Sorry you are back but knowing that you had a period of improvement gives me something to look forward.  I went to Vanderbilt last year and am Hyper too.  I'm curious to know if they put you on Methyldopa or something else and if you think that helped a lot?  I tried to start the Levine protocol but cannot graduate from the recumbent bike to an elliptical so I sort of gave up and just do the recumbent bike (I have a combination piece of exercise equipment in the living room).  I became a bit lax with it and noticed the symptoms worsen a bit when I'm lazy so I've gotten a bit better at trying to do it every day - even it if it just a little bit (I read books or mindless magazines on the bike so the time flies).  I think you have actually inspired me to take out my instructions and try the protocol again.  I'm also in peri-menopause (that's when my issues started) and praying that menopause will bring some relief.  The days before my period are the worst for me and every month it is like reliving a nightmare.  The only good thing is that the medication really cured the migraines (I've had them since I was a teenager but nothing else ever helped).  I still get headaches but they are the kind you can manage and don't feel like you are going to die.

I have the same issue as you - I can't find a doctor in my area that is an expert in this (even though I live in a big city that has tons of great doctors and hospitals for other medical conditions).  At first I thought my internist would work out because she seems knowledgeable on other issues and mentioned having a couple of other POTS people but now she keeps telling me I need to find a specialist (I get the feeling she is scared to treat me) and she can't understand how someone who is having a flare up cannot drive a couple of hours to see a specialist when they are ill.  If I come in complaining that my blood pressure was through the roof, they take my reading with me sitting down and say it is fine and I have to beg them to take it standing up - I feel they don't get it at all and treat me like a regular patient.  The worst part of it was when I was called for jury duty and asked the doctor for a note saying I need special accommodations and she actually told me no.  (I wasn't looking to get out of it, just to have accommodations to put my feet up, eat and drink and take bathroom breaks).  That made me realize that she's clueless about how this affects our daily lives.  By the way, I had to sit there one day and it was a horror show.  The first thing I was told was I could not put my feet up (and then I had such bad tachycardia and the shakes because I was forced to stand for a long time).  I could barely get myself home afterwards, was nearly bedridden all night and had to call in sick to work the next day.  The lack of local support is awful.  It is great to be able to travel to get a diagnosis but I feel there's nobody in my corner for the day to day problems.  I thought I had found someone - a local doctor whose specialty is blood pressure issues but the office said he had seen too many POTS people and wants to focus on high blood pressure so they aren't taking any new patients.

[angelloz]

firewatcher, I am  very certain homones play a large role in all of this. You do need to find another doctor that will listen and help you on your journey. Even if they are not a specialist, someone that is interested and receptive.

HangingByAThread.  Might I ask what medication helped your migraines?  I have horrid ones...start to vomit, I have low blood volume so things go downhill from there. Then there's the three days of unbearable pain. Hoping it might be something I have not yet tried?

[firewatcher]

I am also certain that hormones play a part. Oral contraceptives (without a break) helped my POTS, but caused a bunch of other issues. 

As for "finding a doctor that will listen..." I'm not sure that exists anymore. The more doctors I see, the less I trust any of them, even the supportive ones. 

Thanks for the welcome return. I'm sorry we are all here!

 

[MomtoGiuliana]

For me one of the biggest changes has been increased problems with insomnia.  I am convinced there is a connection to perimenopause.  This causes, for me, more problems with POTS when I am sleeping erratically.  Would love to find a solution.  So far I am avoiding medications for this.

[HangingByAThread]

Angelloz, the medication I take is Methyldopa.  I honestly didn't expect it to do anything to help my migraines but it is like a miracle drug in that regard.  Prior to that I had tried a few other things as well as Topamax but that just made me dizzy and didn't help much (I was diagnosed with migraines, ice pick headaches and premenstrual migraines).  I used to get these horrible stabbing headaches where the veins would bulge out of my head so I think the Methyldopa relaxes the veins and helps increase blood flow but I had never heard of using it for migraines....although I don't this its that strange because I have a friend who is healthy other than migraines and she takes a daily beta blocker to treat them.

You mention low blood volume.....do you salt like crazy?  This has helped me too.  A few days ago I made myself a healthy lunch rather than grabbing my usual salty Chipotle burrito and chips and was suffering so much all afternoon.  I realized that my body couldn't handle the lack of salt (I was taking my salt tablets but my choice of food was too low in sodium and that really affected me - made my head hurt and I got that really spacey feeling like I couldn't stand). 

[sue1234]

Hey Firewatcher!  I can attest that perimenopause makes everything worse.  My POTS, which began 11 years ago, began while in the throes of perimenopause.  In the middle of that 11 years, I finally reached menopause.  I didn't notice any change in my hyper-symptoms at that time, but I can say a few years later, my lightheadedness is less.  BUT, I've been couch-ridden for so long now, I am just soooooo unconditioned that I can't exercise for more than 3-5 minutes without being real short of breath.  I cannot do the recumbent bike because of a hip replacement in 2016, and it causes the angle of hip movement uncomfortable.  Honestly, when I joined here and read up as much as I could, I became hopeful that the POTS medical commnunity would come along with answers and help.  I have not gone to a doctor for POTS in 2 years now.  No one has helped in the past.  I saw multiple cardiologists, multiple neurologist, etc.  Some were "specialists" in dysautonomia, but they were not able to get me functioning.  I am so let down with the medical community. 

[firewatcher]

sue1234, I've been disappointed in the medical community as well. The promising POTS research has seemed to stall and honestly "Healthcare" has been corrupted by turning doctors away from treating the sick into "preserving the healthy." Most doctors I've found won't treat a rare, chronic illness (no matter how motivated the patient) when they can "treat" 10 sore throats and ingrown toenails.  As hospitals and "Health systems" gobble up independent doctors offices and push everyone into "a system," the patients in need of care are abandoned to go off and die quietly with no one to advocate for them.

[Guest KiminOrlando]

35 minutes ago, firewatcher said:

Most doctors I've found won't treat a rare, chronic illness (no matter how motivated the patient) when they can "treat" 10 sore throats and ingrown toenails.  As hospitals and "Health systems" gobble up independent doctors offices and push everyone into "a system," the patients in need of care are abandoned to go off and die quietly with no one to advocate for them.

Truer words were never spoken. I'm scared for what is in our future. I also believe that if I had HMO insurance instead of open choice that didn't require a referral, I would never have been diagnosed.

It is difficult to find a physician not owned by our local hospital system. Then from there, they just refer to each other. You are trapped. I still don't think they believe there is anything wrong with me.

Now you know why I drive 6 hours to South Carolina for treatment. 

[looneymom]

I am so sorry. Hope things turn around soon for you.  Come to Oklahoma and see Tyler's doctor. He treats adult patients now. 

[writerlymom]

Quote

 

Given the incidence of POTS in women there has to be a hormonal connection... my system went haywire as I entered perimenopause, which seems to be a never-ending phase for me! Paxil has helped me with sleep and regulating blood pressure. I'm tired all the time though and don't have as much motivation, and I think paxil contributes to all that. Hope things turn up for you again soon!

[sue1234]

Firewatcher, so agree with your assessment of the medical system.  When POTS hit, I was 46 years old.  At that time, the doctors I went to seemed to want to get to the bottom of my health problem.  As the years went by, especially now into my mid 50s, they seem to not want to delve deeply.  As I mentioned, I quit going to any POTS doctors.  This year I just started with a functional medicine MD, and hoping with time to make strides in the root of my issues.  It may be a dead end, but I am trying that route.

Looneymom, how is Tyler now?  I haven't caught up with your story in years!

 

[firewatcher]

Sue1234, I keep getting tired of all the "healthcare is or isn't a right/ healthcare should be paid for" arguments. I have excellent insurance and can't find a doctor to treat me! The doctors at Vanderbilt and other "super-specialists" are fantastic and supportive, but don't treat day to day stuff. The further outside of specialties you go, like cardiology, internal medicine and family practice just don't touch people with diagnoses like us. As soon as they see it or you ask them a question, they tell you a specialist has to treat it....but its impacting the rest of me!!!! If they do take me into their practice, they won't do even minimal research and then look at me like a clever toddler if I ask a question. Health care treats the healthy, those that are sick with "incurable" or "difficult to treat" conditions are simply ignored. 

I have started taking the OTC MCAD meds plus a bunch of salt, and things have improved, but I have some specific POTS issues that I'd like to treat and no doc to help me. Perimenopause is a ***** and it is making life difficult. My OB-GYN wanted to do a hysterectomy, but I really don't want to deal with hospitals and recovery plus a whole bunch of "medical professionals" that are not going to understand when things go wonky!

 

[HangingByAThread]

I know, tell me about it.  My insurance will gladly pay for countless ER visits but refused all tilt table tests saying they were "medically unnecessary" (I still had them).  I live in an area with the best hospitals but nobody here specializes in POTS or related issues.  My internist looks terrified of me and suggests that I travel 3 hours when I need care.  I think I make her nervous and feel like she doesn't want to see me anymore so I just don't go to the doctor.  I don't mind traveling long distance to Cleveland, Vanderbilt, etc. for testing but those doctors don't take you on as a patient, they just give a diagnosis and suggestions and then help out the next poor soul.  My neurologist said she wished she could help me and a local geneticist sort of made me feel crazy for even coming in and refused to do any testing. 

However, on the positive side I have my wonderful EP but at this point all he can do is hold my hand and check my EKGs when I've been hospitalized (he reassures me that my heart is sound and that really helps but there's nothing he can correct).  A rheumatologist found nothing wrong with me but he took me seriously and said I definitely had POTS and referred me to a great doctor at Johns Hopkins to rule out Sjogren's.  That doctor was wonderful and suspects EDS so I'm hoping I will have some answers really soon.  However, I'd give my right arm to find a doctor I could see when I have issues.  For instance, I am now getting weird spasms in my legs as well as a squeezing sensation every once in a while in my upper arms and odd pains in my head and I suddenly cannot lie down on my left side or else my heart skips beats like crazy.  If I go to the internist, you can guess how that is going to play out, right?

[Guest KiminOrlando]

I know what you mean. I got kicked out of a walk in clinic last week! The guy started taking a history and then told me he couldn't treat me for fever & nausea because my O2 kept dropping to about 90 and I was tachy at 135. I got sent to the ER. I felt a little bad when they asked me what was wrong. I told them I got kicked out of the walk in so they would know I wasn't really worried, but just wanted someone to look at me to make sure nothing bad was going on. She rolled her eyes, then started taking a history. Next thing I know I'm on a heart monitor, getting multiple CTs and blood cultures. Never figured out what happened, but they kept me for 24 hours.

Can't wait for that bill. Walk in clinic. That was all I wanted. Thank the Lord I have insurance.

Kim

[Syra]

On August 10, 2017 at 4:37 AM, firewatcher said:

Hello everyone. 10 years ago, I was diagnosed with POTS (hyperadrenergic tendency type) at Vanderbilt University. My condition has waxed and waned and flared up during the years, but mostly improved. Two years ago, I was frustrated with my progress and did the Levine Exercise Protocol for POTS. It was difficult, but possible and I almost ditched my POTS diagnosis. I was excited at my progress, but my local doctors in Atlanta were not, and were very discouraging, so I stopped...and things got worse. I thought that if I ignored my issues (like they did) and did not bother to treat it, it would go away. It did not. I have also been hit with almost daily migraines, and now perimenopause issues, so I am trying to get back to where I was two years ago.

Anyway, I did a very adolescent thing: I ignored my conditions. I denied my diagnosis. 

I was so tired of wearing this ****** diagnosis like some merit badge, that I pretended like it did not exist.

It makes it difficult to find doctors who will treat me, because they've never heard of it and don't have time to familiarize themselves with it, other than a blurb on Medscape...they all stop at the word "benign." I still do not have a "treating" doctor for my POTS: the local cardiologists say that a neurologist needs to follow it, and the neurologists say it is treated by cardiology...forget family medicine.

So in frustration, and seeking understanding, I am back.

Good to hear that the Levine Protocol was effective! I tried many times but my body just can not push past the pre-month intervals. I also tried to ditch my POTS diagnosis but it caught back up with me as well. Daily migraines here too. All this, to say, I hear you! The hormonal connection discussed here is interesting. I'm surprised to see other women here in my age range. So sorry to hear your frustration firewatcher. You're not alone. And thank you for posting because this thread got me to sign up just now. Newbie alert. LOL

[firewatcher]

Hi Syra, welcome to the forum. I honestly wish none of us were here and that we were all "better" and busy living our lives. 

May we all recover!

[Syra]

Thank you. It is encouraging to know you had a reprieve firewatcher. Cheers (with a liter of saline IV) to all of us recovering! 

[Chaos]

So sorry to hear you are back in the throws of this disease Firewatcher.  So frustrating!

FWIW- My POTS started after a hysterectomy so I am sure there is a hormonal factor to all of this.  HRT helped a bit. If nothing else it helped stabilize my mood. 

I used topomax for the 20 migraines/mo I had for several years when I first became ill.  It helped cut the number down to about 10-12 and not nearly as severe.  Then I started taking anitivirals and my headaches went away almost completely.  I maybe get one every 6 months now.  I have tried stopping the anitvirals and each time my headaches came back at a nearly-daily rate. 

I had labs showing that I was positive for auto-antibodies to 6 out of 9 (and "at risk " for a 7th) when they tested for alpha-adrenergic, beta-adrenergic and muscarinic receptor antibodies.  With this, and some other test results, my doc got me approved for high dose IVIG and Rituxan.  Am cautiously optimistic that I am finally on the right track as I am seeing positive results.  However, after being sick for 10 years with this, I also know that I have this waxing/waning pattern so am hoping this good spell is actually the result of the treatment and not just the natural ebb and flow of the disease. 

Am always hopeful when people disappear from the forum that they are back to having a good life.  Sorry to hear that is not the case for you.

Sending hugs!

 

 

[TCP]

I am sorry to hear this. I hope you can get a doc sorted and you can ease yourself back into the exercise regime again. 

[mountain girl]

I think I remember your screen name, firewatcher. I was here about 9 years ago, soon after I developed pots. I am like many of you, developed pots at 45, have not gone through menopause yet and I am 54! Have only missed a cycle twice in the last year.

I kept working, hoping I would get better and seeing all kinds of doctors to get as much help as I could. Not able to work now, but maintained for a number of years. My current PCP has been very knowledgeable as his daughter has pots, but he is retiring this month, so not sure how his replacement will be.

My daughter has been having pots like symptoms and is scheduled for tests (TTT after a heart echo). The doctor did the "poor mans TTT " in his office and felt TTT was indicated. She is 34.

I have tried exercise in the past, but it always made me worse. My husband just purchased a rowing machine, so I have been on for 2 minutes the past 3 days on the easiest setting. I know I need to build up very slowly.

While I like to have a doctor who is at least knowledgeable about pots, I don't expect a lot, as I feel there is only so much they can do with the limited information from research if that makes sense. In other words, there does not seem to be great strides in research providing effective treatment or cure.

 

[nmorgen]

Hi firewatcher,

I remember you from back in the day, lol. I too have ignored my POTS for the last few years since my family moved back to the US. None of the drs here seem to have a clue and just don't want to be bothered. For several years I actually thought that maybe it had gone away. I was so so wrong. I am far worse than I ever have been. No energy at all, and I'm severely tired now after doing anything. My oldest who just turned 18 is now having symptoms. I wish I could be more upbeat like I was back when I was first diagnosed and getting some help. I was so optimistic then. Now it is honestly just depressing.

[mountain girl]

Interesting nmorgen that you were more optimistic in the beginning, and not now. That is so much how I feel. In the beginning I had more hope. Now after just feeling sick for so long, I agree, it is more depressing.  It takes a toll on you so to speak.

You said your oldest child is showing symptoms, and my oldest daughter has pots, and my youngest who is 32 has "syncope", so while she does not have the pots diagnosis, I think syncope is related. (She has passed out a number of times when standing someplace, usually at work. I wonder if any of the studies show how common it is to be passed down in families? I have read some about it, but not a lot.

Firewatcher, I too struggle with migraines, almost daily right now. I believe they are hormonal related.

My doctor who is retiring is a PCP. I have not met his replacement yet. He felt the best advice he could give me for finding a doctor willing to treat pots, is someone with an interest in it. Unfortunately, I do not think many doctors have an interest in it, and since they do not know how to help us, I think it can be frustrating for the doctor as well. All I really want is someone who believes me, and is willing to try.

 I was seeing a doctor for crainial manipulation therapy which has been found to help some pots patients.(not a cure, but I did feel better) This doctor was 80 years old, and did only manipulation treatments. He cared enough to look up pots and read about it, and really understood it! I think the manipulation treatments helped me, but he passed away. Now, the closest doctor that does these treatments is an hour away, and too expensive.