Scared because I don’t know what’s going on

[Madisonjan7]

So my problems all started about two months ago, I realized when I was standing that my heartrate would go to 120 or above and I felt nauseous a lot. That was my only problem, but it scared me because I have major anxiety. After my mom putting it off for months she finally realized after seeing my hr go to 160 bpm one day that this was a problem. I went to the ER one time out of being scared of the high hr  and they recommended me to a cardiologist. I’m 18 and they recommended me to a pediatric cardiologist but I went anyway. His nurse took my BP lying, sitting, and standing (I have no idea what my BP was he never mentioned it) and he quickly came in saying that he has never seen anyone’s hr go as high as mine standing(it was 150) . He did an echo, several EKG’s, blood test, and 7 day heart monitor which all checked out to be fine. He put me on Florinef 0.1 mg. I was constantly checking my hr and realized the meds were not doing me any good at all. I started having worse anxiety attacks. I would get tremors, nausea, and dizziness. So for whatever reason that he did not explain he took my dose up to 0.2 that I have only been taking for a week. I started getting real bad dizziness standing, so bad that I wouldn’t get off the couch but even lying down I would get dizzy at times. So my mom suggested low BP as my problem (I didn’t know I had this) and she bought me a wrist cuff to take my BP. (I’m so obsessed with taking my BP now). With this cuff I have realized that my BP is low when I lie down and it goes up if I sit or stand. Lying down it is always 90/58 or lower sometimes down to 80/50. This scares me because can’t you die from low BP?? When I’m sitting it varies from 98/60 to 108/65. Standing 116/75 usually around there. I just went to the cardiologist and he started me on midodrine 5 mg 3 times a day and lexapro 5 mg once a day. Along with the same dose of florinef. He did not tell me why I’m having low BP and says he’s just treating my symptoms. I’m very scared to what might be wrong with me. Does anyone else experience what I do? I get terrified to go to sleep. The midodrine/florinef/lexapro all combined keep my hr in 60-70s sitting and standing about 100, but my BP still goes crazy. 

[Madisonjan7]

I would also like to add that I’m dizzy no matter what my BP is. I get nausea and headaches often too. It’s very scary not knowing what’s going on. Makes me mad how ungrateful I was 2 months ago in perfect health, I would do anything to feel good again.

[Weyland]

Don't get scared ,you won't die from your low BP and high standing heartrates. Same things happened to me when I first got sick. Your in the right place to ask questions, almost everyone on here has these problems. You should try to get to a specialist . They have a list of doctors on this site....

I know what you mean about taking your good health for granted . I think everyone does . I would give anything to get my old body back....

[Madisonjan7]

I just found a specialist in Florida where I am and I’m definitely going to try and get in @Bladerunner !! Thanks for the encouragement, does this disease ever get better? Or is this something that is gonna cripple my life? I just moved to Florida and I’m right on the beach and can’t even enjoy it because my symptoms. Also I noticed that almost everyone on here had low BP standing and it goes back to normal lying down. I’m complete opposite, very low while lying down and normal to low while standing. Would that mean I do not have PoTs? I’m just so confused, sorry for all the questions

[Weyland]

Many people recover and get better or they find the right combination of drugs and doctors to feel as normal as they can . You are young so you have youth on your side. 

As far as your BP changes and having pots ,only a doctor can tell you that . I'm no doctor but as far as my experience with pots goes , it sounds like you have pots if your hr is going to 150 when you are standing . Mine did the same thing . Some have low BP and some have high BP ,depends on the type you have . Have you had any autonomic testing or a tilt test done ?

[Madisonjan7]

@Bladerunner no my cardiologist just did echo, ekg’s, and 7 day heart monitor and told me I would out grow low bp. He didn’t tell me why I have it or anything.

[Weyland]

Yeah sounds like you really should see a specialist that understands these kinds of problems so they can do the autonomic testing on you ,and check for any autoimmune issues you might have....

[KiminOrlando]

@Madisonjan7 Hi, and Welcome to Florida! I'm in Orlando, grew up on the beach and it STINKS to be so close but not be able to enjoy the beach.

I wanted to let you know that arguably best doctor for Dysautonomia is in Jax at Mayo. He is a neuro, Dr. William Cheshire. He does research and publishes on PubMed. I don't know where you are exactly, but in my opinion, he is worth an overnight stay in Jax. I'm in the process of going back to see him for a follow up from 10 years ago... new problems / old problems, where do I go from here type of things.

Good beach days are coming up- December, February and March. Of course, I bring a giant cooler full of water and gatorade, salty snacks, chairs and a giant tent like shade, so it looks like I'm moving in when I do manage to get there. Some times you just have to get your toes in the sand!

Take care.

Kim

[Madisonjan7]

@Bladerunner I’m going to try and make an appointment next week, my midodrine and florinef aren’t seeming to work that well. It’s still low. 

@KiminOrlando I am in Pensacola here on the navy base. I found that there is a PoTs doctor in Pensacola so I’m going to try him out! It’s very scary being so young and not knowing what’s going on. My mom is a nurse and is completely confused by it, I get very scared that they won’t know how to fix this problem.

Also, a question for both of you, what is the best all round low bp meds cause I have it no matter my position. It’s so confusing cause I have good and bad days, some days I won’t even feel it! And others I’m scared out of mind because how I feel.

[Weyland]

I know how you feel ,it can be very scary when your body is doing strange things. The midodrine is supposed to help with low BP . And taking in salt and plenty of fluids can help with low BP ....

[KiminOrlando]

@Madisonjan7 that is a trick question. They will try you on midodrine, most likely. It didn't work for me, but it might for you. Before they do anything they should give you a tilt table test and draw blood. They need to check catecholamines. How they do this is important. If the blood draw is done at the wrong time, it will give false readings, so they need to do it before you pass out, if you pass out. 

I'm on a beta blocker. It keeps my heart rate from going too high. My cardio explained that once your heart gets going so fast, it doesn't fully fill with blood before it pumps again, so it drops your pressure. Slowing the heart can increase your pressure in that case. Normally a beta blocker would lower your bp. If your pressure is low, your brain probably isn't getting enough O2, which makes you dizzy. You aren't going to die, but boy will you be miserable!

Depending on catecholamine levels, there are other drugs they can try - not many, but some. This is for hypoPOTS. If you have hyperPOTS or some other variation, all this is moot. 

I got sick when I was 13. I've been dealing with this for many years, but most people recover and it is temporary. Since your mom is a nurse and I know she wants to learn everything she can to help you, show her the Dysautonomia ebook on this website. She will get quite a bit from it since she is in the medical field. It is written by a very well known doctor who has done tremendous research on dysautonomia. 

I wish I could tell you how to 'fix' your body. I hope you end up being one of the lucky ones who only have temporary dysautonomia. In the meantime, still go live your life, even if you have to go in a wheelchair for big things like Disney.  Hit the beach and watch a beautiful Gulf sunset. You can get a tan by a pool. You just have to get in the water ever 10 minutes to cool down, hydrate constantly and NEVER SWIM ALONE. I do not recommend passing out in a pool. Been there, done that. 

Kim

 

[Madisonjan7]

@KiminOrlando thank you so much, you have helped tremendously!! I don’t feel as scared anymore. I’m sorry you have had to deal with this so long, I can only imagine! I’m only 2 months in! My heart goes out to you!! My cardiologist already started me on midodrine and florinef without tilt table test.

[yogini]

It is normal to be scared when you first get POTS.  You are very lucky that you got diagnosed quickly.   It is very important to monitor your HR and BP and write it down when you first get POTS.  But don't obsess.  I would not worry at al about the numbers or fluctuations in BP that you describe.  BP is supposed to increase for healthy people from lying to sitting to standing.  90/60-120/80.  Your numbers are right there. Rhey seem normal.  An HR of 160 or even 120 obviously is related to the POTS.

Personally I found that trying too many medicines at once created chaos.  It was much better to try one thing at a time, and slowly increase my dosage. Because of side effects, you want to take the lowest dose you need  and the fewest medications to make you feel better, with the fewest side effects. If you go too fast, you will be loaded with meds and won't be able to tell what you need, what's helping and whats causing side effects.  Both florinef and SSRIs take a couple of weeks to even kick in.  Many of the drugs are also very painful to get off of - more reason to go slow.  It may take a few months to sort it all out the right way.   Of course your doctor decides your treatment, but you should ask questions and feel comfortable.  

If you can find a very experienced doctor in your area that others recommend, that would be the way to go.

Edited October 30, 2017 by yogini

[Madisonjan7]

@yogini yes I noticed everyone else else started slowly on meds. My cardiologist had me on florinef 0.1 mg for a month and then added another 0.1 mg in the day And only had me on that for a week before he then added midodrine 5 mg 3 times a day. He did not take anything slowly but told me to not worry and just take them. He did not diagnose me with PoTs, I’m going to see a Dysautonomia doctor very soon though so maybe I can be diagonosed. He told me that I just have low BP and I’ll out grow it because I’m so young. I hope he is right! But just something makes me feel like there has to be a reason I have low BP... I lived a very normal life before all of this. it blows my mind something could cripple my life so easy and fast that I do not want to leave the house or be alone out of fear, I want my life back! Why did I take things for granted in the past. I feel so bad for the ppl who have this and they faint or can’t even sit up. My prayers are with y’all.

[KiminOrlando]

Oh no.... he used the 'you'll grow out of it' line? I got that one too. 35 years ago. Still growing.....

The next excuse was 'girls and hormones'. 

At least he is trying the right meds. As rough as the road feels, it is so much better now. There is still a lot of research to be done, but at least the internet links us together so we can commiserate - and laugh.

Maybe you will have a temporary case and get back to your regular life. Many people have, but growing out of it makes it sound like the awkward tweens, not a medical condition. Geez, I hate that phrase!

[Madisonjan7]

@KiminOrlando I feel much better on these meds, I have spikes in my BP where I feel sweaty and shaky, I take my BP at those times and it’s usually 130/85 and when I wake up I’m dizzy but other than that this has been working good for me. You said maybe I would be lucky and it would go away, how would I know? So I could come off these meds. Also, not trying to be super nosey into your life, but do you live a pretty good life even though you’ve had this disease so long? Are you happy? and live a fairly normal life with medicine? I’m scared if it doesn’t just go away that it will cripple my life. My husband is young like me and a healthy marine and he wants to get out and do things, I don’t want to hold us back.

[KiminOrlando]

@Madisonjan7 One day you could wake up and not feel dizzy and shaky. Your BP could be high and the doctor would try backing you off the meds - and all your numbers could be normal. It has happened to people. It COULD happen to you. I think it is more likely to happen than for it to be permanent. 

How is my life? We are comparing apples to well, locomotives - not even oranges. I have so much more wrong with me. I'm so high maintenance that I annoy myself! I didn't get married because I was either in class, studying, working or recovering from those three. Then I went to work full time and was very worried about keeping my job so I could have insurance and keep a roof over my head, that all I did was work and recover from work. I didn't have children because I didn't get married. I never considered being a single mom because I knew I could never take care of a child without a husband to pitch in. There were times that I couldn't take care of myself. I know that sounds sad, but I'm ok. My choices are of my own making. I focused on getting in to a situation where I could be independent. 

I worked at a job that provided me with disability insurance. I bought a house. I get to spend time with my parents and my brother's family. I've been to ballet recitals, soccer games, Halloween, my niece's birth... all things I would have missed with my family if I was well. I would be working. I spend almost 3 weeks at Christmas with them. When I worked, it was 3 days. Yes, a lot of things my friends got, I didn't get, but I'm ok with that. I didn't get a lot of their problems. They are running around from place to place, but have no time to enjoy what they have.

Honestly, I'm happier now than when I was working... and I liked what I did. I just talked to a friend last week that made me want to go back so badly, but I know that I would crash and burn rather quickly.

Do I have a fairly normal life? No. 

Your husband loved you enough to marry you. That is in sickness and in health. Yes, this is going to change his life too, but he may surprise you at how supportive he can be. This will be a test for your marriage, for sure, but often these things make relationships stronger. 

It will take some time to figure out what meds you need to be on. Hopefully, no other symptoms will develop and you will be able to manage this. I hesitated to tell you I wasn't married and had no kids because I didn't want you to think that was your plight. Most people are married. Most people had kids. Like I said, I'm the locomotive in the fruit basket.

Kim

[RecipeForDisaster]

Just to pitch in here, since I hope I'll make you feel better... I think I have a great life and am very happy overall, despite not ever feeling well or being able to work full time or do all the things I want to do. My husband is wonderful and we either adapt activities to what I can do, or I just push through if I'm able. Sometimes I end up passed out in the woods, or just feeling extra bad, but that's the tradeoff. We have made a good life anyway. No kids because I can barely take care of myself, but wonderful pets and I'm good with that. I don't feel like my illness has ruined anything. Of course it sucks, but it's the hand I'm dealt...

[mountain girl]

Madisonjan7,

I am so glad you found this site. I can see others have been very informative and supportive to you. 

POTS is different for all of us. I am married, and have two grown daughters. My husband is very supportive, and has been from the time I became ill. We adapted to what we could still do together. 

I have a pen pal friend who has pots, and she has had it since she was young like you. She is married and now has a 5 year old son.

Another friend, their daughter has pots. She became ill at age 22, and is married with 3 children.

They both have family support, but many of us whether sick or healthy have family support with children.

My husband has a saying for me, and perhaps you have heard it before, "you have to find the new normal".

Life may not be normal as you know it right now, but the new normal is just different.  Allow yourself to grieve and be sad over things in life you miss doing. That is normal. But then focus on something you can still find enjoyment in. I jokingly compare my life to the ice cream stand, and tell my husband they only had chocolate and strawberry, and I wanted vanilla, so in other words, I don't like the hand I have been dealt, but I am dealing with it. Some days are better than others.

Try keeping a journal. Make notes daily of what you did, or how you feel. Later, when you look back, sometimes you can see you made more progress than you thought!

Blessings and hope to you:) 

[Madisonjan7]

@KiminOrlando @mountain girl @RecipeForDisaster Thank all y’all so much!!