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Newly Diagnosed - And Completely Overwhelmed!


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Hello Everyone,

I am a newly diagnosed POTS person. I had never even heard of it before April 11 of this year. I am so overwhelmed by the way I am feeling, and the fact that I am now so drastically different than I was even four months ago.

I was admitted to the hospital on the 11th, and that is when I first heard of POTS. I have never been sick for very long, so I thought a stint in the hospital might "fix" me. I was so wrong.

They think that when I had viral meningitis in 2001 is the cause of the POTS. I have had "anxiety" symptoms off and on since six months after the meningitis.

Now I am having trouble with medications, they can't seem to get me "adjusted" properly. I do okay for about 3 days on a new med, then the tachycardia, clumsiness, shortness of breath, pain in my throat when swallowing and chest pains come back. I even get dizzy sometimes, not sure why that isn't always a symptom. I also get very red in the face when I get up off the couch, even to just go to the bathroom. I have trouble with the left side of my body, it aches and my hands and feet are colder than their right side counterparts.

Right now I am on Midodrine, Protonix, Zyrtec, Klonopin. The Midodrine dosage was up to 5mg three times a day, but now it is back down to 2.5, my doctor thinks part of my problem is that I am not tolerating the Midodrine well. I am drinking LOTS of water and have ingested more salt the past week than in my whole previous life I think. I have the compression hose (which I hate because they bind up behind my knees). I have done everything I have been told, and these symptoms are just not abating. I am supposed to go back to work Monday, and I can't even get up and vacuum my house, or make dinner. :blink: I am terrified at the thought of going out in public at this point. What if I have another bad "episode"?

How do I do this? How do I cope with this problem, and still be a wife and working mother of three children?

If anyone has the answers, I know it will be here on this forum.

Thanks,

Angela

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Hi Angela,

Welcome to this wonderful support site! I'm so sorry you are experiencing all the awful symtpoms this illness entails. I have found that having this has completely changed my life and how I live it. I now need to live hour by hour rather than week by week. Plans to be out and about constantly fall through due to how weak or unwell I am. I had to quit my job because, like you, just getting off the couch takes all my effort. I rely on family and friends to get us through this as much as possible when they are available to do so and at times I have to much pride to ask for help and then pay for it big time with worsening of symptoms when I try to be too independent. The hardest part is being too weak to drive myself anywhere at this point. I think the positives that have come out of this is that if I do have even a small window of energy and can do a small task around the house, like loading the dishwasher, I focus on that I was able to do that, and consider it an accomplishment and am thankful for that. From now on, the best thing to do is focus on what you can do. Even though you can't control what your body is doing, you can control how you deal with what is happening to it. Find out what options are at the place you work as to sick leave options and maybe if your medications eventually adjust to your system, some folks on this site continue to work and do pretty well, really depends on your individual body. Also, find a support system to help with the kids and the house. Give your body time to rest and think positive as much as you can - stress only adds to it and elevates symptoms (hard to do, I know).

Take care,

Tammy

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Glad you found us. As Tammy said, POTS, as with any chronic condition, does force us to slow down and accept life one day (sometimes one minute) at a time. You may not be able to go back to work for awhile. In my case, I was sick enough to be disabled for nearly a year. Now I work nearly full-time and my symptoms are mild and manageable and sometimes I have no symptoms at all. Since yours was probably brought on by a virus you have a good chance of the symptoms abating--it just may take TIME and proper management. It sounds like you are doing all the right things to take care of yourself. Unfortunately you will probably have to be patient. And it may be that you and your doctor still need to find the ideal medication regime for you.

Take care,

Katherine

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Angela, A special and cheery welcome to our group. I know that dealing with an illness such as POTS can be so very difficult to deal with. Hopefully, our support will help you get through the days.

Virtually all of us have had difficulty finding the right cocktail of meds to help us somewhat. Have you tried a beta blocker? How about Mestinon? SSRI's? It takes often many months/years of finding the right meds to help abate the symptoms. What works today may not be effective next week, and so forth.

Have you been tested for Lyme disease?

Hope you are soon on your way to better management of your symptoms.

Lois

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Thank you everyone for the warm welcome and the good advice. :blink:

It is certainly going to be hard to start taking things "one day at a time". I have a lot of lifestyle adjusting to do. I am grateful for all the support and advice you guys have given.

Goldicedance - the first med I was put on was atenolol. It worked somewhat for three days, then exacerbated my symptoms. Then they put me on Cardizem, that totally put me in a tailspin within 30 mins of taking it! For a day there, I thought they might actually be trying to kill me. lol.

The doctor I have seems to think I have pots, and no further testing is needed. I am thinking of seeking a second opinion. He won't address my "left side" issues. Says they are unrelated to pots.

Today is a good day so far, I have eaten and actually went for a ride in the car with my husband. We are going to try to go to a birthday party for my youngest son's best friend. We'll see how that goes. I am also expected to return to work on Monday, with a restriction of only working 4 -6 hours/day that week. Ugh. Wish me luck!

Thanks again,

Angela

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Welcome to our little corner---- :)

Maybe you should see a neurologist also, just to rule out anything in your central nervous system.

You mentioned getting red in the face-----------------

Can you get a blood pressure cuff?-----an electronic one that also measures heart rate. Maybe you get spikes of high BP, and you need to lower the dose of midodrine. I would get another opinion, maybe more. Sometimes people end up over medicated , which could make things worse.

Beta blockers helped me a lot, along with klonopin later. I also take wellbutrin----a small dose. IT doesn't fix everything, and I'm still not as functional as I used to be, but at least I can drive short distances, and get out a little. I need to lay down often----especially lately, but at least I'm not as tachy, or have the EXTREME anxiety/panic feelings. This can be very crippling. when I had this often, I couldn't leave the house either, not by myself anyway.

I hope you get your symptoms under control. Please know that all of us are here to lean on when your feeling bad.

Sending you a big hug .....roses.jpg

Maxine :0)

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Hi and welcome!

I don't have any advice as I am somewhat new to this...2 years...although I think I had mild symtoms before. It is definitely an adjustment. Hopefully, you will get your meds straightened out and become pretty functional. I am not on meds now - I was on a beta blocker for about a year to keep my heart rate down. I function pretty well. I am able to do most things and people think I'm fine. Symptoms are worse when I am sick, even with a simple cold. I can't run, exercise vigorously or do a lot of things in hot weather, but otherwise, I do pretty well. I play with my kids, take them places, clean my house, do some gardening, walk and sometimes pilates. It took me several months to get to where I am now. I hope this will give you some positive vibes.

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Hello there,

Today was my first day back to work. I worked 4 hours. I had about 1 1/2 hours of bad time, but the rest was tolerable. The problem is, that the Midodrene only lasts about 4 hours, and since I take it at 6:00 a.m. it wears off before the next scheduled dose at 11:30. If I take the next dose earlier, then I have to take the last dose earlier, then I will start being symptomatic and miserable in the evening while I am trying to be with my family. I called the doctor, got the nurse, and she said she didn't know what to tell me. :(

Then, on the way home, I got a flat tire. We have major road construction on the highway I got the flat on, so I couldn't pull over. I had to drive on it until I came to an exit. I called my husband, and he yelled at me for driving on the tire. (I think he was really worried about me) I didn't know what to do, I don't have the stamina to try to change the tire. I was almost in tears. Luckily, my stepdad came to my rescue.

So that was my first day back. :unsure:

Angela

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Angela,

Hello and Welcome! :unsure::( There are alot of great people here who have been a great support for me over the last two years. I hope you find that here too! Sorry I am just getting to this post I been down that last few days.

I would agree about the meds. It's kind of trail and error. If you feel it not working I would let the doctor know. I can say when I went OH, to a POTS doctor, they but me on a timed Midodrine 6 times a day. I think I was like 6, 9, 12, 3, 6, 9 (9 was the last as I was going to bed) but it worked the best. Before that I was on it 3 times a day. The doctors also had to play trail and error with the dosing.

One thing I will say is keep pushing to find the meds, to get you the right place. Don't let POTS define your life, Let your life define what your POTS will be. It's easy said then done. I had to give up working due to POTS, NCS, Lymes, but I fighting to make sure I find a quality of life that I want. It been a long battle for me, but thats ok I keep telling myself at the end of this it going to make me a better person. Plus it make me slow down and enjoy my life, and spend time finally with family and friends, and mostly my son. Before I got sick I worked 60 plus hours a week, and then even came home and then would do paper work, I never spent anything with my husband and son. Now I can. So I try to find the postive in this hole thing. Beleive me I have my bad days, But I am trying to stay postive.

Hope things start improving, and gald you are able to get back to work! Take care!

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Welcome to the forum. I'm sure you'll find loads of support here...there are so many helpful, kind and experienced ppl.

A small suggestion about the midodrine, it's my med too.... I also had a problem with how the dose runs out before the next. My doctor put me on a lower dose at more frequent intervals, and this works really well. I take it every 3 hours at half my regular dose. (For me, this is 5 mg every three hours, works out to 5 times a day....before this it was 10mg 4 times a day....less more frequently works a lot better for this med, at least in my case, and it sounds like your reaction is similar to mine.) Good luck!

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As most here know and you soon will its all a turkey shoot when it comes to the meds. But you have to give them a chance. Sometimes it will take quite a while before they work or maybe they will not work at all. You will need to get a very firm grip on yourself. You have a hard time ahead. Sometimes you cry sometimes you are full of life. Take control of your condition by that I mean be very active in its treatment. If it works do it if not let it go. Your caregiver will get down at times so dont forget to give them a hug and let them know how much they mean to you....and smile.....

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Angela

You are in SW Ohio? How far south? Are you within a few hours of Toledo (NW ohio ) to see Dr. Grubb (8 month waiting list) or Cleveland Clinic (NE) folks here have seen? I am south of Dayton and Toledo was under 4 hr drive for me.

Sorry about the new dx and flat tire. I am also near a circle interstate that has LOTS of construction they just started...I am avoiding it for the next few months/years.

Hope you find a doc and meds to help since you are working.

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Hi! Don't give up hope!!! I started miserable at working 3 hours a day and in the beginning- it is all baby steps. I thought it was interesting what you said about you thought that the hospital stay would "fix" you. Same here. I had a long 16 day stay and when I went back to work at a hospital, I just wanted to kick the patients out of their beds so that I could have them! I just wanted to be fixed. I also wanted general anesthesia for 1 year increments. Obviously, neither of my plans worked. I guess it is all part of coping with a chronic and very distressing illness. I hope you find comfort in this forum....

Kits

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Hi Angela, I am also very new to this condition. I was dx in August 2006 after three years of various tests. I am sorry to hear that you are having a difficult time and as everyone has said this forum is a great support network. I live in Scotland and none of my family or friends had heard of POTS however I am very fortunate that my symptoms are fairly mild. I have had to make adjustment to my lifestyle but compared to others on the site I am luckly. I try to take me life a day at a time because the condition is so unpredictable and I have tried very hard to not let it control my life, which was what I did initally. Perhaps if you continue to use the forum you will get the support you need. Oh I also was off work for a long time but now I can work 35 hours a week, which intially I thought I would have to give up. So dont give up hope, you just never know with this condition.

Take care

Liz B xx

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Hello,

Today has been a "not good" day. I am feeling poorly. I am keeping track of my blood pressure, and it stays between 130/90 - 145/94. I have never paid attention to my blood pressure, as my doctors have always said it was fine. Now it's not fine, and I am wondering if that might be why I am feeling a little "off" sometimes. My doctor doesn't seem concerned about it... I am keeping a journal to show him at my next appointment.

Sophia3, I am also South of Dayton, but North of Cincinnati. (Butler County). My husband wants to see my current doc on the 25th, then see if we can get a referral to either the Cleveland Clinic or to the other doc I see referenced on here.

I am supposed to work 40 hours nex week. Ugh. I don't know how I'm going to do it. My doc is happy if I'm not tachycardic, so he won't keep me off work for "feeling bad".

Thanks for the support everyone,

Angela

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Hi Angela,

Those are some high numbers for blood pressure. Were they that high before starting Midodrine, salt, and lots of fluids? If not, then it might be wise to ask your doctor about cutting down on the Mido, salt, and fluids. That is a good idea to keep a journal of your bp and symptoms to show your doctor. Also, make sure you're checking your pulse and blood pressure both while lying down and standing up. That way if the rates are fluctuating your doc will know.

I hope that you can get your symptoms under control soon. Good luck with work.

Take care,

Rachel

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Hi Angela,

Those are some high numbers for blood pressure. Were they that high before starting Midodrine, salt, and lots of fluids? If not, then it might be wise to ask your doctor about cutting down on the Mido, salt, and fluids. That is a good idea to keep a journal of your bp and symptoms to show your doctor. Also, make sure you're checking your pulse and blood pressure both while lying down and standing up. That way if the rates are fluctuating your doc will know.

I hope that you can get your symptoms under control soon. Good luck with work.

Take care,

Rachel

Rachel,

They were not that high before. They have never been that high until this last exacerbation of symptoms that put me in the hospital. :rolleyes:

Angela

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