Newly Diagnosed

[micheller]

Hey! I was diagnosed with POTS a week ago. I started having symptoms when I was pregnant with my daughter 3 years ago. It was mainly severe nausea and reflux. My gyno said it would go away once I delivered. Instead it got worse. While I was pregnant I could barely eat, only gained 6 pounds, was horribly tired...I think I slept more than half of my pregnancy. Lol Anyway the symptoms got worse after delivery so I was referred to a GI. He ran a bunch of tests which were positive for reflux. I tried all the meds with no relief. I ended up having 3 surgeries over 2 years to correct the reflux. No relief so I was sent to a specialist. My first appointment with him he was asking odd questions like if I sweat a lot, if my hands and feet were always cold, if I had dry eyes. The questions caught me off guard because they weren't the normal reflux questions. He scheduled me for a scope. I woke up in the middle of the scope, he said he gave me enough sedation to put a normal person in a coma. I've had 5 scopes before and that was the first time the sedation didn't work. After I was in recovery he asked me to sit up, stand, walk around to the other side of the bed. A few days later his nurse called and said he wanted to schedule me for an autonomic dysfunction test. I was pretty confused until the nurse explained my jumps in heart rate. I failed all the tests. He has me on sodium chloride tablets for now. I'm scheduled to see a neurologist in Dec.

I have to say this disease or syndrome is very weird and it's not what I expected to be diagnosed with when I went for reflux. In the last 3 years, I've had a lot of trouble eating foods that don't make me nauseous so I contributed my symptoms to lack of vitamins. After doing research on pots I have all of the symptoms. It's quite discouraging to read that there is no cure and the prognosis isn't good. I'm 28 with 3 kids so it has been very difficult trying to manage daily activities. I haven't worked since I was last pregnant, my symptoms were too bad to handle it. I'm taking online classes in accounting, almost finished. I guess this diagnosis just flipped my life and my plans upside down. I know there's meds to manage the symptoms but I usually have the rare side effects so I try to stay away from them.

I do have a few questions about some things that have been going on and I'm not sure if it's a symptom. For the last 2 months my hips and legs have been really achy and painful. When I sit or put my feet up, my legs throb. Usually a warm bath helps but only temporarily. The more active I am, the worse it gets. Symptom?

I also have glasses and last year I got contacts. I can wear them for one day and the next 2 days my eyes feel like they have sand in them. I've tried numerous brands but they all do the same. They can be very uncomfortable too. I've read that some people have eye problems. Would this be one of them?

Sorry it's so long! I'm just trying to educate myself and be as prepared as I can for whatever happens next.

[Latacia]

Hello micheller and welcome to the forum!!! Sorry to hear about your diagnoses. Something like that is never good to hear.

I feel as though I had pots as a teenager, but my symptoms got worse after the delivery of my son.

To answer your question about the aches and pains. If I'm not mistaken this is normal. I can't tell what symptom goes with what anymore. I also have fibromyalgia and arthritis also. As for the contacts I would not know. I do not wear glasses nor contacts but I do suffer from eye problems such as blurred vision,double vision,and my eyes do not focus all that well. If you have any questions please feel to contact me.

[MomtoGiuliana]

Welcome to the forum, although I am sorry your symptoms and diagnosis brought you here. Sounds like you have/had a great doctor who was able to put all the pieces together and make a diagnosis. Hopefully the specialist you see in Dec can help find a treatment that works for you.

I also developed severe symptoms during pregnancy and post partum (was finally diagnosed post partum). I used an SSRI and beta blocker for awhile. My symptoms now are far less severe than they were during pregnancy, 9 yrs later. In other words, to answer your concern about prognosis, prognosis is not necessarily bad. It is likely that you will improve over time, but it may take awhile. It also may take determining the triggers that induce symptoms/flare-ups. eg, some people discover allergies or other problems at the root of the flare-ups (although others don't).

The pain you are describing is not typical of POTS. It may be fibromyalgia or something else. Although people with EDS as the cause of POTS may experience pain in joints, etc.

POTS patients tend to be always slightly dehydrated. This could be contributing to your dry eyes. I also cannot tolerate contact lenses. But dry eyes can also be a symptom of other conditions, including Sjogren's syndrome. Some people w POTS also have an autoimmune condition.

Again, welcome to the forum.

[toddm1960]

I'm not sure if many on here have those joint aches and pains, but I sure do. I'm just like you every joint in my body hurts, it feels like I'm frozen in the morning or after sitting for only a few minutes. It starts at my neck and runs all the way down to my ankles.......even the joint in my toes are stiff and sore. I've had ANA levels checked and everything comes back normal, though I am possitive to HLAB27....which is a whole another story. Good luck and I'm glad you've found us

[micheller]

Tee, I have the focusing problems too. Kind of like when you look at something with crossed eyes. It seems to happen alot when I'm in the car, maybe something with movement makes it worse?

My aches and pains are mainly from my lower back down. Feels like I ran for hours. I've also had twitches, mainly in my right shoulder but lately have been happening in my fingers, as I'm typing this my right thumb is spazzing. They don't last long, just annoying. 2 years ago my dr put me on reglan for nausea and that can be a side effect, short or long term. Maybe there's a connection with the reglan since it messes with the nerves.

I have not had any others tests except for the ones I mentioned. It seems like it's going to be a long road to get to the bottom of what's causing it. My new specialist is quite interested in my intestinal problems too. I've had troubles since day 1. I spent my first 2 years at Children's because I could not have a BM without meds. I spent 22 years on different laxatives, the only ones that worked were stimulants. I would go weeks, months without a BM. I eventually begged my GI at the time for a colostomy. Sweet relief!! I had no health problems at all after the surgery until I got pregnant with my daughter. Something about girls! Lol

Is nausea normal with pots? It's one of my worst symptom. I can deal with it during the day most of the time but I dread going to bed. Everytime I'm about to fall asleep it hits me like a ton of bricks and I have to sit up. I've never vomited from it. I can fall asleep fine during the day so it's only a night thing. I thought it was due to reflux so I have my bed on lifts and pillows I prop up on.

[GingerA]

Hi Micheller,

We have a lot in common I think. This thing has turned my life upside down as well. Like you I am taking classes online that were suppose to advance my career. Now I can't work at all so I'm not sure what my next move is. I have three children and I understand it is hard! But this site is a great place for information because most docs don't know much about this. Let me know if there is anything I can do to help you. Even just being there to vent! LOL Welcome to the site!

[micheller]

Thanks GingerA! Seems like we are in the same spot. I'm going to school for accounting which I could do at home but I'm sure it would still be difficult. I'm wondering about disability. We've been managing ok without me working but as the kids get older, things get more expensive, my boys are 5 and 7, my daughter is 2 1/2. Even going grocery shopping wipes me out which I used to love.

[GingerA]

My field is Early Childhood Education so to be at home is difficult. But there are options such as research or teaching online classes once I finish the degree.

I just applied for disability this week but was told that it could take up to a year or more to get so I am trying to think of anything else to do from home but many days I don't feel like doing anything. Its a big change for me because I was always very active.

I know what you mean about grocery shopping. Sometimes its not worth the effort.

[Brye]

I'm too tired to make this a long response. My POTS developed after baby #4. My beta blocker (atenolol) is my real saving grace. I did apply for disability and was thankfully approved. That extra money goes toward kids day out programs and babysitters to help as well as my house cleaner who comes every other week and medications and doctors bills. Hope you find some relief of your symptoms. I've been struggling 4 years but some things have gotten a little better. Welcome!

Brye

[micheller]

How long did it take you to get approved for disability? I've been reading a lot about beta blockers on here. What symptoms do they help with?

[Brye]

I was approved in less than 6 months. I was so prepared for rejection, I was surprised when I got the notice in the mail. My atenolol helps so much with my heart racing. I can tell even if I take a dose late I get winded because my HR just goes too fast. It also helps my hand tremors, that's kind of a bonus. I take florinef and midodrine as well to keep my blood pressures high enough so I can take the atenolol. I think I'm on the right meds now, occasionally they have to be adjusted for symptom control. I'm trying to decide if I should go with a pacemaker. It would make adjusting my atenolol easier. Right now if I increase my atenolol my HR goes too slow. My best decision over all this time however is my house cleaner. Best money I could spend!!

Brye

[micheller]

So it's pretty much a trial and error with the meds. I can't say I'm prepared for that, I'm very sensitive to drugs. I have to wait until Dec to see my neurologist. I hope every day they call with a cancellation. I don't have patience for these types of things! Lol

[Brye]

Hope you get in soon. Waiting for appointments is the worst. It is a trial and error thing for me. Fortunately I've found a cardiologist who is willing to adjust my meds over the phone every once and a while. He's a 3.5 hour drive away so he's saved me a lot of travel time. Hope you find a treatment plan that works for you soon. POTS is exhausting, especially with little ones to take care of!

[micheller]

My GI does a lot of things over the phone which is wonderful! Would be nice if more drs did that. I was offered a job today. It's with the county I live in and have been applying with them for years. I'm a little afraid to take it. It's doing data entry so sitting at a computer for 8 hours a day. I think I'm going to try it out eventhough I'm sore and tired after doing homework for an hour. I just don't want it to interfere with my disability app.

[sandymbme]

Micheller- If you try to work, and prove unable to do it, it could end up helping you. Not to mention the fact that a job will pay better than disability! I was really fortunate, I have private disability insurance through my employer, so when I could no longer work they provided income through that insurance. It took forever to get approved (literally 2 years, a rejection, a reversal, and mountains of paperwork!) but I had tons of documentation so I knew it was just a matter of time. Now they are helping me with the disability process through the government, and will even provide me with a lawyer if I get denied. Doing everything I could to try to keep working, pursuing every treatment possible, and working as long as I possibly could all worked in my favor in the end. Not to mention the fact that you can still qualify for disability if you are working, there are just income maximums that you need to be conscious of. (I am not sure what they are, but there is a ton of good info on the disability website.)

As MomtoGuiliana said, EDS can cause POTS. It is my root cause. The pain associated with it can be horrific. I have literally been up all night because my hip has been so bad I can't sleep. As I said in another thread, nausea and GI symptoms are one of the most common POTSy issues, you will find a ton of people have GI issues, especially with motility. Which can cause nausea.

Sandy

[micheller]

I did work for 2 weeks last year and found it very difficult to get up in the morning. Since my nausea is it's worst at night, I don't usually go to bed until really late. It was hard to concentrate looking at a computer screen for 8 hours. But like you said, I'll try it again. The job I start Monday is temp, until the end of the year, so I'll tough it out.

What kind of pain do you have with your EDS? Like I said, it's only in my hips and legs but if feels like they are in a vise. When I had the autonomic dysfunction test, the technician put electrodes on my foot, ankle, knee, and arm. She started the machine, I couldn't feel the one on my foot at all. I couldn't feel the one on my ankle or knee but felt it in the middle of my calf. My feet and ankles are numb all the time. She said it's normally a sign of nerve damage. Also during the table tilt, she put me up to 70 degrees for 15 minutes. My feet were turning purple and very cold, among the other effects from the test.

[Sallysblooms]

Does your doctor understand there are ways to help the nerve damage?