JimL

2 hours ago, Derek1987 said:

I live in TN. I'm 31. Been experiencing chronic fatigue since my early 20s. I'm guessing I've been dealing with this for a long time and my body cant keep up anymore. Now it's like since September 2018, I've been broken. My body is unpredictable now with a lot more symptoms. My wife use to be so mad at me for my tiredness. Any second I wasn't working I wanted sleep. 

I figure I'm headed towards SSDI. Unless I try some medicine and it works miracles for me. I'm sure they will try and get me a sit down job. My first black out was sitting down at Olive garden lol. I thought I was dying. I appreciate the sympathy. I'm definitely missing out on things I can't do anymore and things I planned to do. Sorry if I've repeated the same things over and over. I'm in so many threads and too tired to re-read everything lol.

Have you been to the Vanderbilt clinic?

3 minutes ago, AnewDay said:

I cycle through this problem quite a bit I seem to get a flare up whenever my body goes through stress I had a tooth abscessed about a 7mo ago and then antibiotics and the breathing thing came back with a vengeance.  For some reason it seems to be related to my gut so I started taking zinc carnosine and it seems to help when nothing else would.

      I think if I eat perfectly no Dairy gluten refined sugar that kind of thing it may prevent the flare up to begin with but once it starts zinc carnosine seems to be helping me quite a bit.

I didn't make the connection that might  My stomach was related to my breathing because when you're in a really bad flare-up when you first wake up in the morning the breathing start and so you don't recognize the triggers  .

  Anyway I'm just trying to let people know   

I have stomach issues too that started with H Pylori. I even went on a second round of antibiotics a month later and nothing has changed. I have to wonder if it dings the immune response which cascades into other problems. There's so much we don't know. 

4 hours ago, Derek1987 said:

To keep it short as possible. I'm still employed. Still on short term going into long term(Lord willing they approve me for LTD). They tried to deny my short term disability and said someone with my condition should be healed by now(there is no cure). The disability manager also said my specialist isn't qualified enough because she's a nurse practitioner. She has a doctorate in autonomic services or whatever. I also told them I was referred to this specialist by a cardiologist. I said okay if I have a doctor look at my records and cosign me being off work, will that satisfy you to get my approval? She said no. Long story short, I had my specialist write the disability company a note of what my disease is. I sent them her background information. I also threatened to get my attorney involved. I didn't hear anything from them until the last day to get valid evidence in their eyes of my disability. Shockingly they approved me. Now I'm filling out things for long term disability. It's been a stressful hassle. 

If you don't mind me asking, what state do you live in? I pay for short and long term disability, so as long as I have a doctor sign off, I can get up to 6 months on short term. Long term is through my retirement fund, which is the state where I live. I've heard SSI is very hard to get. I just want to get back to where I was or close, to be functional. If I can't, it's going to suck. I feel for you as you seem to be young. Having something like this with the more life in front than behind would really suck. 

12 hours ago, ScottS said:

Among the many ways whatever it is I have (POTS being a handy and convenient catch all) affects me are both Chronic Fatigue and Fibromyalgia. So yes, I remember them. The reason why I linked to the NY Times article isn't to jump on the "let's bash doctors" bandwagon. (Been there/done that, nothing good ever came for me from either.) Rather, I just thought it would be good for someone/anyone struggling/in the midst of an especially aggressive episode or attack/getting better after a prolonged series of episodes or attacks to catch a glimpse of another person sailing by and, all the while, living a different but parallel life.

Sorry if I've bashed doctors. I had very good ones in NY and good in Iowa, but since moving to AZ, not as good. I don't know if it's chance, geography or just a change in the medical field over the years, but I wish I had the doctors I had in NY or even Iowa. Just better at diagnosis in general. 

1 hour ago, Pistol said:

What I have experienced about doctors and POTS is that it requires them to see the WHOLE patient - not only the PART they specialize in. Often it is cardiologists who see POTS sufferers first due to the tachycardia - but there is no ACTUAL abnormal arrhythmia and no abnormality of the heart itself - so they claim it is not their area, that we need to go see someone else. Normally they will send you back to your PCP with a report that there is nothing structurally wrong with your heart. Same with Neurologists - there is nothing wrong with your brain and your exam is normal. If only they knew that the parts are just that: A PART of something called the body of a human being and that there is actual interaction going on within that body! And that if the computer of a car gets messed up then SOMETHING will stop working - and the another thing and so on … but you can keep changing the oil or replace the air filter or spark plugs etc - it will not change the fact that the car does not drive because the computer is broke, not any one part. The docs have to change the way they approach medicine and many docs are not able - or willing - to realize that. 

William Osler said that if you listen to the patient they will give the diagnosis. This was 100 years ago. 

2 hours ago, chimeraskeep said:

That's why it is important for you to see someone who specializes in dysautonomia - often it's a neurologist.  If you go to the eye doctor, they're just going to diagnose whatever eye problem you might have.  If you go to a gastroenterologist, they'll just focus on your stomach, you know?  This is a whole-body illness, and you need someone who knows how to see the full picture.  As for your wife, she sounds just a bit ignorant, meaning she just doesn't get it.  Have you maybe sat down together and looked at a few dysautonomia websites together? Maybe you should even take some time to write down/list all your symptoms, and also see how they may be related to POTS/dysautonomia or syncope?  Then you will be better equipped to educate her... but first and foremost, she needs to know and accept that these diagnoses are REAL, that these conditions are PHYSIOLOGICAL, NOT psychological, and you canNOT simply push through the symptoms, nor would she be able to if she were the sufferer, and her wanting for you to just push through is a cruel expectation.

My wife doesn't believe in doctors. She thinks the only doctor one should see is the medical examiner. One of her brothers had appendicitis and had to go to the hospital and her mom said she had to take a shower first. When I had spine surgery last October I was in the hospital for 5 days and she visited once. 

8 minutes ago, chimeraskeep said:

Jim,

I'm very sorry you are going through a tough time, but you are actually quite fortunate to have received these diagnoses.  Many people with conditions like POTS just continue to go undiagnosed because it takes a keen, informed physician to spot them.  It is important that you do see a doctor who specializes in dysautonomia not only for treatment, but also because often there is some underlying illness/disorder that is causing it.  You may want to look into neurologists who specialize in this area unless the cardiologist you see seems thorough.

I don't know what your employers are like, but perhaps it would be best to keep them informed of your doctor visits, educate them on your diagnoses, etc.?  Maybe if they understand what you are suffering from, they will have empathy and try to be lenient somehow?  By the same token, you also must be lenient with yourself -- It is far too easy for people in our situations to be hard on ourselves, blame ourselves, try to push ourselves beyond our limits, and tell ourselves we should somehow be in control of our symptoms, or that they are "all in the mind", as some loved ones around us insist.  Advocate for yourself, and let people (e.g., your wife) know that this type of thinking is not okay.

Best of luck to you!

My wife thinks it's in my head. She doesn't understand why I can't just push through it, like she would. The cardiologist wants me to see a EP Cardiologist that deals with elements of this. I could go to mayo, but I didn't have a good experience there. It took two months to get in and then the eye specialist was pissed because she said she didn't have my records and I contacted my PCP and eye doctor twice to send them over and allegedly they did and at the end of the visit it was like, yeah, you have double vision from 4th cranial nerve palsy that you've probably had for awhile but your brain stopped compensating. That was it. My regular eye doctor gets the report and says see me in a year. Thanks Mayo. If this turns out bad I am thinking maybe I should get a lawyer. How many Dateline and 20/20's do we watch about stuff like this where the patients were labeled and the doctors were wrong and yet it continues. 

Remember CFS/Fibromyalgia? It was considered psychosomatic at one time. POTS was probably considered hysteria by some, anxiety by others. I have to wonder if doctors ever consider their confirmation bias and motivated reasoning and the consequences of such. The more I get into this, the more disappointed I am in the medical profession. I think part of it are biases and motivated reasoning and part of it is a business model centered on metrics and not patients. I have to wonder if there is a list we get on that labels us and it's like a permanent record that one can't escape. Just look at the woman in one the DI's videos that went to 41 doctors before getting good help. It's not like we live in a 3rd world backwater. I am having a hard time with this. What's worse, dealing with the symptoms or no one believing you. It's like I have some magical disorder that 99.9999% of people never heard of and therefore it's made up. Oh fast heart rate, it must be nerves. Dentists aren't a problem for me, at least not yet. 

4 hours ago, dancer65 said:

Nice work !

If only we could revamp  our bodies so that they played a different tune that would be amazing 😁

Some day. 

They should turn the sound off on those things. It's enough to trigger someone. 

1 minute ago, Astrogrl said:

I’m in a similar situation with sick time.  It is unfortunate that there is so little accommodation in the system for people dealing with chronic conditions.  I hope you find a way to make it all work!  

Me too. 

2 minutes ago, StayAtHomeMom said:

It can. My Sister in law was labeled depression and hyperchrondric. Turned out she had MS with low pain tolerance. She had numerous issues over the years when they would finally test they would find something. She had a sore throat (doc said strep) every month for a year. A nurse practitioner felt something one time she went in. Turned out she had nodules on her thyroid. 

There's a lot of bad medicine out there. For every Dr House there are 100 Frank Burns. 

3 minutes ago, Astrogrl said:

I don’t know if it is financially feasible, but if so and if you work at a large enough company, you can actually apply for intermittent FMLA leave to deal with your own chronic condition.  It is leave without pay, but one in which your job is protected.  

I have short and long term disability insurance. Thing is, I am out of sick days, so I'd have to pay for my insurance when out which would eat up quite a bit of the insurance. I work for the state and what sucks is that our sick time accrues at half of what vacation time does. I don't use much vacation time and we're underpaid to begin with, but don't get me started. I have 5 years until I can retire. I'd hate to screw it up, but if I can't figure this out, I may have to bail. 

3 hours ago, StayAtHomeMom said:

Some doctors don't know what to do with you after the diagnosis. My cardiologist tried to send me to an EP cardiologist. The EP cardiologist told him to send me to a specialist 3 hours away. It was a good choice. That being said my cardiologist started me on beta blocker to get my HR down. He was willing to learn about it. He had never seen it. 

Yeah, he's sending me to an EP Cardiologist that allegedly deals with POTS/Syncope. Worse comes to worse I could try Mayo, but it takes forever to get an appointment there. 

3 hours ago, Pistol said:

Neurocardiogenic syncope is not POTS - but it is a dysautonomia. I have both ( and meny people do ). How did your doctor make the diagnosis - based on your TTT ( or HUTT )? 

Tilt table. I passed out at one point. About 5 minutes after I got the nitro, maybe 25 minutes in tops. When he said neurocardiogenic syncope, I said POTS, he said yes. 

I'll also add some doctors don't like knowledgeable patients. I don't know if it's ego or what, but if you come off informed and asking questions like someone in the health field and you're not,  you could be labeled a professional patient. I think that accounts for a lot of dismissal by doctors. Ever see the episode of Seinfeld where Elaine tries to get a doctor to check something out and there's a note in her record that she's uncooperative or something like that and every time she goes to a different doctor, they are so interested until they read her permanent record. I have to wonder if that happens for real. 
 

Unless something sticks out on a CBC and metabolic profile, they don't get interested. There are a few reasons for this. One, medical practices are way over subscribed. Doctors often have hundreds if not thousands of patients they see in a year and you're just 10 minutes to them. The business comes first, get them in and out. Then there is the factor of competancy and gravitas. Just like anything else, a smaller percentage are really good and the rest ho hum or suck. Then there are the biases that come from experience and the generation of their training. POTS and autoimmune diseases were once the perview of psychiatrists. Remember when chronic fatigue and what would be lyme disease were considered psychosomatic? With all this considered, unless you have a doctor that had excellent training, did residency in a busy and diverse hospital and has natural curiosity and decent intelligence, you'll get the ho hum and worse. I would say in general, look for an Internist before a GP. Where did they do their residency? Helena Montana or Bellvue in NYC? Did they go to NYU medical school or something 3rd string? I would place curiosity/intelligence/desire to find answers high on the list though. I just think POTS is in the same place CFS was 25 years ago and unless you're dealing with a doctor that gets it because he's seen it or knows it really exists, it just going to put you in a 10 minute bucket and you're done. 

William Osler is considered the father of modern medicine. He said that if you listen to the patient, they'll give you the diagnosis. Lots of doctors either never got that lesson or forgot it. 

Well, I went to the cardiologist today and he said I have POTS or as he called it neuro cardiogenic syncope or something like that. He sent me to a different specialist that allegedly works with that.  I got the feeling POTS isn't his thing. He wanted to verify it, but then what? More specialists, no more sick or vacation time left and it gets tough to do the job with POTS. I just wish they'd get to the bottom of it already. 

And on top of this, my wife thinks it's all in my head. 

Any updates on this?

9 hours ago, potsiebarbie said:

I make it all up for fun. Lol Or I love paying for parking at the doctor's office. Haha

Or running out of sick time at work.

10 minutes ago, andybonse said:

I don’t suppose your on a PPI like omeprazole?

I am. 2x a day. 

1 hour ago, Pistol said:

@AnewDay - as per nutritionist consult low acid diet ( also for IC ) I do only eat steamed or cooked veggies and avoid all citrus ( acid ). Since adjusting my diet symptoms of both GERD/ Barrett's as well as IC ( interstitial cystitis ) have vastly improved. 

At least it's not a MCAS diet. That would drive me nuts. Might as well be carnivore. I did Keto for 16 months. I DK if I can go back to it. Right now my stomach is messed up as are other things. Today was tough. I've been having symptoms I don't know what to do about. Belching/breathing/headaches/cold hands and feet/diplopia/bloating/left side abdomen pain/pain weakness in shoulders and neck and fatigued. I am ready to call it quits. 

When they can't figure it out, it's psychosomatic. 

59 minutes ago, RachaelLee56 said:

I’m sorry to hear you’re struggling with this crap too. It’s terrible at times. I’m currently taking Lexapro and Xanax when necessary. These 2 meds have helped me a lot but I’m still having symptoms. I have tried beta blockers in the past without much relief and some other meds a POTS doctor put me on that just made me worse. I think it was Florinef. I drink a lot of Gatorade and wear compression hose that help. I try not to over exert myself but being a mom of very active kids, that’s impossible most days! 

I hope you have a good follow up at the cardiologist tomorrow! I always have good check ups there. I love my cardiologist but wish he knew more about dysautonomia. At least I know my heart is healthy. I still worry about the skyrocketing blood pressure I get sometimes and it scares me because I’m petrified of a stroke or something. Which only makes the blood pressure worse! 

I have or had high blood pressure and I am on lisinopril and metoprolol, small doses. I've lost 167lbs since June of 2017. I don't know if that has anything to do with it or getting the H Pylori or the back surgury. Anyway, here's a link to my thread: 

Not sure about lexapro and xanax. I know what the latter is, not the former. I had been using one knee high compression  stocking due to a DVT I had in 1993, but the knee highs aren't enough. I got 20-30mm pressure thigh highs and I have full 30-40 stocking, but it's much harder to get on and the feet are tight. I need custom or something better like I do with the knee highs, it's just expensive. that said, the compression stockings help a bit. I try to use a bit more salt too. I just don't know what to do to make this right. Back in May,  was hiking over 20 miles a week. Now I have problems just getting in a mile or more a day just walking. I can't imagine having to care for little children. That would be impossible. I have 5 kids, but the youngest is 13, so they are self sufficient for most things. Right now my wife is very stressed as more things are on her and she doesn't get this. She doesn't believe in doctors. She thinks the only doctor one should see is the medical examiner. I come from a different background. If you don't feel well, find out why. I hope you find anwers. There just doesn't seem to be a lot of doctors familiar with this and it seems that even the ones that are treat it symptomatically. I'd like to see more root cause analysis. If a few million people have this, it's common enough to want to figure it out. 

I have a very similar experience, but I am new to this. I think some of my doctors think I am a head case. I have my followup with the cardiologist tomorrow. I have gastro issues as well. Belching, especially after eating. What started my crap show was a H Pylori infection last year that was confirmed through EGD with gastritis. I also have 4th cranial nerve palsy too, that became apparent through this. CT scans, MRIs, ultrasounds, all negative for anything that could explain my symptoms. I had a tilt table test last week. Passed out. That totally freaked me and I haven't felt well since. I hope to get some answers tomorrow. I think the key is to find a good doctor, meaning PCP. I am still looking.