New To Site, Diagnosed With Pots 2 Months Ago, Please Help, Im Scared

[sonyasmith12]

Hi, I'm a 41yr old nurse from South Florida. I have been very sick since Oct 2011. Took months to finally get autonomic testing at the Cleveland Clinic in Weston FL. Now that they confirmed that I do have POTS and dysautonomia, they have no idea was has caused it. The electrophysiolist stated to me "This is your life now, we really can't do much, you just have to get used to it. ? NO Hope. I felt like I was being abandoned. I cannot find anyone in South Florida that treats POTS. I do have a apt at Mayo Clinic in Jackson will next week for a 2nd opinion from a Electrophysiologist there. Am I wasting my time going 6hrs away? Do You have any suggestions.

[puppylove]

Do not give up hope!!!! I felt like you do in the beginning and I completely lost hope. But after a long search I finally found a couple of good doctors. Even though it's kind of trial and error there are many different routes to go. Exercise, medications, salt/ fluid loading, compression, herbal supplements are just a few. For me a combination of all of those. I'm glad you found this site because it has also been great for support too. ((((hugs)))))

[sonyasmith12]

Thanks. It's just so difficult to come to grips with being such a burden. I have been unable to work, house work, even showers exhausts me. I go to gym, do one tenth of what I used to and get short of breath, then later I get really sick. Faily does not understand, I worry they are just sick of me.

[sue1234]

Welcome! Hey, I went to Mayo-Jax in February(12 hour road trip one way), but have to go back in April to see the cardio. I'm suspecting it is the same doctor we are both to see. I would be very interested to hear what you find out after your trip there. I originally went for an appt. at Mayo with an endo to get help with my low blood sugar, and he set up the appts. with the cardio and a neuro that I will see in April. Then I will meet with my endo again to get an idea what's going on. If you'd like to private message me with who you are set up to see, I'd love to keep in touch.

[ramakentesh]

That is a ridiculous comment! That you will never improve and have to get used to it.

Most either improve eventually after a long 1 stage illness or get relapses and remissions over time.

[mwise]

Welcome to the best forum for information and support to deal with POTs & Dysautonomia. I am sorry to hear anyone would tell you to just get used to it. No, I agree with Rama and puppylove that there are doctors out there to help you find a treatment plan specific to you to help you get back on your feet. Some on here have gotten better and resumed their lives and there are many on here like myself that go in and out of remission and try to have some normalcy in their lives. The forum will help you with understanding what you have and help you find what will work for you. Keep us posted with your planned visit to Mayo. It could very well be a start of getting you back to your normal self.

[MomtoGiuliana]

Welcome to the forum, although I am sorry you had to find us and that your doctor didn't give you a lot of hope. As others have said most do see improvement over time and most respond to some sort of treatment. I hope you can see a specialist who can give you more assistance soon.

[jangle]

Sonya it is true its going to be difficult to find a doctor to treat you be cause they don't teach dysautonomia in medical schools or residency. However we're a bunch of smart people ourselves and working together with doctors we can find things that can work. For me, endurance exercise has helped alleviate my symptoms quite significantly. Also vitamin d and lipoic acid has helped. It is simply not true that you can't improve, im doing better now than I did before and at times, significantly better.

[FarmerAmy]

Hi Sonya, I think a lot of us can relate to feeling abandoned. It *****! I have had undiagnosed POTS for over 20 years. My symptoms took a drastic turn for the worse in November 2011. Coincidentally I was also diagnosed with POTS around the same time. For me it has been a lot of trial and error to see what works. I have spent a lot of time on this forum and others seeing what helps other people.

I am not back to my "normal" level (i.e. pre-November), but I feel so much better than I did a couple of months ago! I have the right medication that helps me, I drink an electrolyte drink (and spend half my day going to the bathroom!), I wear compression stockings, I work on my laptop in a recliner, and I try to walk a mile or two each day. I only shower (or take a bath) in the evening and sometimes I skip a day when it seems like too much effort.

One of the biggest things that has helped me is learning that I have POTS. Before I knew what was going on I really pushed myself and struggled every day. Now I know that I need to take it easy and my frustration level is much lower. I used to get so frustrated because I would feel ok lying on the couch, but I couldn't sit at my desk for more than about 30 minutes without feeling exhausted. That made me crazy!!! Now I know that I just need to set myself up in my recliner and I can work for a long time without feeling fatigue.

It really seems like different things help different people. And some people have a much harder time than others. My advice is to try anything and everything you come across that you think might help you. Hopefully you will find a few things that will make your life easier!

[Chaos]

Welcome! Sorry to hear you're having such a hard time. Sounds like we have a lot of similarities.

I was also diagnosed initially at CC in Ohio (after a preliminary TTT locally by a cardio). Then I saw a neuro at Mayo in AZ who I found to be much more helpful than any of the cardiologists I saw. Personally, the cardios I have seen seemed to think that if my HR and BP were ok, then I was "healed". They didn't see the whole picture at all.

I know others on here do have cardios who have helped them (Blair Grubb being a prime example), that just hasn't been my experience. However, I think the real issue is just finding a doc who really knows and understands POTS and all it's implications and who can see you as a whole person and not just one with HR and BP issues.

I have also been diagnosed with Autonomic Neuropathy which may be one of the causes of my POTS. Not sure if you were given the whole autonomic reflex screening or just a TTT to diagnose your POTS? In my case, the neuro told me (after seeing me for a year) that I will likely have this for the rest of my life but did say that with lifestyle management and meds he was hopeful that I would have long periods of remission. He told me this because of the autonomic neuropathy and the fact that "at your age (48) nerves don't regenerate like they do in someone who is 18." If you don't have the AN then you would probably be even more likely to see improvement/ remission in your POTS symptoms.

I was really sick and off work for 9 months when I first got this. Since that time I've been able to work part time and resume many of my activities but never have been back to what I was before I got sick. But with lifestyle changes (primarily pacing myself and making a lot of changes in my attitude) I've been able to live a life I find satisfactory most of the time.

Don't give up hope for improvement!

[abbyw]

Hi Sonya,

I want to continue encouraging you just like the others here. With the help of the World Wide Web and a doctor who first suggested OH, I basically self diagnosed myself in November. Like many others, I also have had doctors tell me that I have anxiety and the only thing I need is psychiatric meds, and other doctors who told me that I should stop surfing the web so much and obsessing about how I feel, and then I'd be fine. I was really depressed, thinking that I was going to be incapacitated for the rest of my life without anyone even believing me that there was anything wrong with me. I didn't even know if I believed it myself. Once I had my own diagnosis, I went to my doc who had never heard of POTS. She was open enough to look it up and said "OMG, I think that's what you have!" She wanted to give me an honorary medical degree for all of my research! This forum has helped me to know what is "normal" for POTs and what to expect and what avenues to explore.

I would definitely say that I have a milder form than many of the people here, but in November, I was getting dizzy so many times a day, and I was so exhausted all the time that I spent most of my time trying to sleep. I couldn't walk for more than five minutes without feeling faint. Now, only 4 months later, I can honestly say that I have 95% of my life back. I am back at work, I have enough energy to make it through each day (I wouldn't say gracefully, but I make it) and I am functioning again. It is not life before POTS, but it is not lying on the couch all day praying to feel better.I know my limitations, I need more sleep, I have some side effects from the meds, but I am really OK. Of course, I do hope and pray that one day, I will be all better and won't need the meds, but for anyone to say that this is how you will be for the rest of your life is just not necessarily accurate. I have read many posts here of people who are so much better. I now look back at the two months from November to January as a nightmare, but it is a memory. I am grateful to the members of this forum for providing so much support and information. I hope that you, too , find the right combination to get you going again. Don't believe that the situation is hopeless!

Like I have also seen in other posts, my recommendation is to do your research to find the right combination that will work for you, and then try to get your mind off of it. Do as much as you can each day (that you won't have to pay the price for afterwards). Those few minutes of feeling "normal" will build up minute by minute.

Wishing you much luck!

Abby

[sonyasmith12]

You have all been such an amazing help. I don't feel as lost and anxious over this diagnosis. Thank you all so much. I pray the Lord just leads my way, since its so easy to get all caught up in the poor me attitude. Does anyone have a problem with their husbands being irritated or distant when you are sick???

[Lemons2lemonade]

Sonya, oh yeah. My whole family is a problem. They all expect me to be healthy and I can't be. This starts a lot of arguments.

[FarmerAmy]

Sonya, maybe this is a time for some couples counseling. You are really sick and you need your husband to understand and support you. Would he be understanding if you broke your leg or if you got cancer? This is a medical problem as well and you did not choose to be sick and you can't just choose to make yourself well.

I have had undiagnosed POTS for over 20 years. About 5 years ago my husband convinced me that my fatigue, etc. were not normal. That is when I began my search to find out what was wrong with me.

Prior to my husband convincing me, everyone else in my life made me feel like I was just lazy. My ex-husband used to get frustrated with me because I was so slow to get going in the morning. I was always late for work and people thought poorly of me because of it. Even my mom used to call me a "slug" when I was a teenager. Granted, these people did not know that I had a medical condition. But it made me feel terrible about myself.

You are having a hard enough time right now. You don't need other people making you feel worse on top of your illness.

[sonyasmith12]

Thank you FarmerAmy. This illness does go unrecognized in the family as well as friends. They don't see something broken so they think I am exaggerating my symptoms. It definitely takes a toll on your emotions. I'm so thankful to have found this site, since I can never express to anyone the significant impact this syndrome has on our lives.