Hello, I'm New!

[Carly87]

Hi!

My name is Carly, I'm 21 and have been dealing with dysautonomia for close to 2 years now. I'm so glad I found this place! I've struggled with this condition on my own for way too long! Here is a little bit of background about me and my journey with dysautonomia:

Well, I'll start by saying that I've never been 'officially' diagnosed with POTS, or dysautonomia for that matter. I slowly began getting symptoms when I was 19...Weird changes began happening in my body that I couldn't explain. I began getting winded much easier, I'd feel lightheaded and my heart rate would increase significantly whenever I would stand up. Each morning was horrible with the tachycardia...I couldn't get out of bed or even shower without getting heart rates of 150+. As a college student already in a stressful environment, this made my life a complete ****...I had recurring episodes of hypoglycemia (never happened before this) as well as an intolerance to alcohol. I was very fit a few months prior, so I had no idea what was going on.

Needless to say, I developed an anxiety disorder...No doctor would believe me that my anxiety was NOT the cause of these symptoms, but rather these symptoms were the cause of my anxiety. Panic attacks made my life and condition so much worse that I eventually gave in and tried some SSRI's at my doctors discretion...Bad idea, I'll leave it at that. Basically at this stage I was a complete mess...Lost 20 lbs cause the anxiety was so bad I couldn't eat (I was already thin...Went from 135 to 115lbs which is very skinny for my height.) I was so desperate for SOMETHING to change but no one could give me answers.

I hit an extreme low and I decided to take things into my own hands. The doctors didn't understand, so it was useless to sit around in fear all day every day. I searched the internet night and day about things I can do to help alleviate my symptoms and I was shocked when I came upon the description of POTS and Dysautonomia! I had almost every symptom listed. After researching, I felt a lot of my anxiety lift because I was assured I wasn't dying. I could eat again, I no longer got panic attacks. My heart symptoms were still prevalent, but I wasn't as scared of them.

I basically just "lived" with my condition for the next 6 months or so, until one day I went to the ER with really bad chest pain. My heart rate was also very fast. I went through the ringer with all the tests and the only thing they found "off" was low potassium. I have been diagnosed with MVP since age 11, mild regurgitation, but my new echo showed there was NOTHING wrong with my heart, no more MVP! This made things A LOT harder with the docs. They wouldn't even hear me out about dysautonomia, etc. Its all just anxiety, anxiety, anxiety.

One thing I am thankful for, although my doctor doesn't hear me out, he was concerned about my fast heart rates and near fainting episodes he decided to put me on beta blockers (25mg of Metoprolol/lopressor morning and night) which I agreed to because I knew from my research that POTS can be treated with them. The beta blockers DEFINITELY made a big difference in my quality of life, however when I took the 25mg at once I had breathing difficulties. So from then on until now I take half in the morning and half at night. While this has increased my quality of life a lot, there is still a lot of work to be done...

I'm happy to say that I've come a LONG way since the days of being so afraid of this condition, but I still have a long way to go. I'm a much stronger person now, I've hit rock bottom so there was no where for me to go but up. I exercise, eat almost all organic diet, and try not to stress and it has helped tremendously. Despite feeling better, I still get major symptoms in the heat, PMS, and when I get stressed. I'm trying to think of other things I can do to help offset symptoms, but as a broke college student, I can't afford to go to a place like mayo that specializes in this area of dysautonomia. If I even asked for a referral from my doctor, he probably would tell me to quit worrying about it. My plan right now is to increase my exercise regimen when I can in order to build stronger muscles (which I hope will help make things easier!) I have a big big year ahead of me (Senior year at college!) in which I will be applying to law school and all that goes along with that. I know that will stress me out, so I NEED to be able to handle it!

Phew, sorry I wrote a novel here, but I've never really been able to share these issues with anyone who would understand. I wish all of you the best of health and I look forward to chatting with everyone on here.

[Ernie]

Hi,

Welcome to our family.

You will make many friends here.

[helen.t]

good Luck in all you do!! The one piece of advice I'll give you is to pace yourself and not take on too much at once, especially when you are having a good spell, even if it takes longer for you to complete your course, your health comes 1st because without it life becomes so much harder. I say this because as soon as I had times of feeling good, I would take on more commitments and then have a major crash trying to keep up with them. You sound like you've had the same experience I had for 25yrs before I was dx properly but sometimes treatment for anxiety can help with some of the symptoms we have to cope with. As long as you know that they are helping you for a different reason and they help, who really cares. At the end of the day you just want to be as well as you can be so if doctors want to put a label on it, just let them. I did for a long , long time even when I knew they were not right, but it gave me peace when I didn't stress out about it and went along with it and tried out different things. When they don't work, they have to pay more attention to what is actually wrong with you. All the best for your studies, Helen

[Rachel]

Hello Carly,

Welcome! I'm glad you found us.

That's great that the beta blockers have helped you. I hope that the exercise helps you as well.

Sorry your pcp doesn't blieve you about the dysautonomia. If you need more help from a doctor, don't be afraid to look for a new pcp. Your health is important! Also, you can sometimes get into a local cardiologist or neurologist without a referral from a pcp, so that might be worth looking into if you want to get an official diagnosis and help from a doctor with managing your symptoms.

Good luck with law school!

Rachel

[Mary P]

Hi Carly,

Welcome to this forum. Everyone here will listen and understand and support you in every way possible.

I echo Helen T's comments 100 %, to pace yourself and take things easy even on the good days. Pushing yourself isn't worth the crash that will always follow. It's difficult not to want to want to 'make up for lost time' when a good day comes our way.

Having said this, I must also confess that I haven't always done what I know my body needs and expects of me. Sometimes this is my own doing and at other times I can't always say to others, "I need to lie down now", "I have to go home now", etc. You'll find that you have to set limits for family and friends as you must do for yourself.

I wish you the best in locating doctors who will listen and respond in a caring and supportive way.

Mary P

[Carly87]

Thank you everyone for the warm welcome!

I appreciate the advice about taking it easy. I've definitely had times where I've pushed my limits a bit too far and wound up feeling worse for awhile. I'm learning more and more as time goes on how important this is, and what exactly my limits are.

I got out of school in May and I have been "relaxing" ever since! Even though I was feeling alright, I opted not to pick up a second job working nights this summer (even though I need the money ) My other job starts in about a week and a half. Until then, more relaxation

[momofsara]

Welcome Carly--Speaking as newcomer myself, you will find many friends and understanding people here. This forum has been a godsend for me. If for nothing else but to vent about non-understanding doctors! Best wishes in finding one who will listen to you and look for treatment for your symptoms. I came here because of my daughter who has numerous health issues along with dysaautonomia, as do most everyone here. Hang in there sweetie and best wishes in your future. Susan

[lloppyllama]

Hello Carly,

I'm glad you found us. You have had a rough couple of years dealing with all of this, sorry you had to go through all that, and still do.

I'm glad that even though your doctors haven't officially diagnosed you, that you found out about POTS and now know how to treat yourself better.

You said you don't have the money to go to a place that specializes in dysaut. like Mayo. I go to Mayo in MN, and I just though I would share with you the things that they do to "treat" patients, since you don't have a doc who is helping you, and it definitely sounds like POTS to me.

First off they had me increase my liquids and salt. They had me start out by taking in 2 liters more of liquids a day than I had previously, and now I am supposed to take in as much as I can. As for salt it is the same, as much as my body can handle. I also am starting taking salt pills to increase my sodium.

The other main thing they stress about at Mayo is exercise. I am exercises for 30 minutes a day, of upright exercise. I am also starting to run a little bit each time... hoping that soon I can make my exercise more strenuous.

They also put me on metoprolol, which you are on, but I take my 20 minutes before I get out of bed in the morning, which makes mornings go a lot smoother. I am also on midodrine, and nortryptiline and melatonin for sleeping.

I don't know if that will help much but, I hope things start to get better for you now that you have more support in your life!

Oh I also use compression stockings, which are very helpful.

Best of luck, and Welcome!

Mary

P.S. One more thing that came to mind, is that even though you do need to pace yourself, you really need to push yourself as well. For me that is more important than pacing myself. There are a lot of things in life that I want to do right now, and so I have made the decision that since nothing is actually harming my body with this illness and I just will be in pain or feel crappy, it is ok to push myself. I just have to be able to handle the "crash" and persevere through it and get the things done that I need to do. So I guess I am just telling you that you might need to make the decision of whether or not you would rather accomplish all the things you want to do while feeling ill, or feel healthy but not get everything done as quickly as you want, or at all. Either option is fine, and just becuase I chose to feel crappy but get to do more of what I want, does not mean its the right choice. But I think that for me, I needed to sit down and figure out what was more important to me, so that I could go on with life, and have a plan.

Sorry for such a long post,

Mary

[Maxine]

Welcome to the group Carly!

I hope you find GOOD doctors who will help you.

You need understanding docs to keep your symptoms under control.

Especially being younger-----you want to have a good quality of life---

Maxine :0)

[Megan]

Hi Carly! As a fellow college student (I'll be starting my junior year in the fall), I understand the stress! I have been diagnosed with POTS (...that doesn't make college any easier!) and after a few years of being treated for being psychotic (and reacting very badly to many meds...) I'm doing pretty well. I'm actually leaving Friday to study in London for six weeks! I guess I just wanted to let you know that there is hope. I can do so much more than I could a few years ago. I didn't think I would be able to graduate from high school, but I'm in the honors program at my university and thriving. I hope that at some point you do find a doctor who will support you (could you try a different physician to see if someone else will listen?) but the support here will help, too.

Meg

[helen.t]

hi Just want to comment on Mary's post about pushing yourself. I'm afraid I don't really agree too much on this as when I did this, which was often, I became so ill that I could not function at all. Usually people with this disorder are people who want to push themselves anyway as they do not want to be ill and it's a case of learning how much your body can withstand before collapse. The trouble is sometimes you can push and get away with it and other times when you have too much going on at once, then it spells disaster. Sometimes people have collapse even when things are going well but I think the key is to get to know what helps your body, as we are all unique, and know when to rest and when to push. The advice I was given when I was dx with CFS was to do enough as you could do without getting tired and stop as soon as you did, have a break to recharge, then do a little more, repeating the same principal. It was the best advice for me and helped me achieve in the past more than I could do if I kept pushing all the way. Things are way different for me now as I'm profoundly disabled but I still hold to the same principal which helps me have a life of some sorts. Everyone's different of course, but that has been my experience. Hope all goes well for you, Helen

[maryfw]

Welcome. It can take awhile to get diagnosed and to find a doc that will listen and explore. It took me over 20 years to get a proper diagosis. I was diagnosed with MVP at 15 yrs old. I now know that I dont have that. I have been told that I anxiety and panice attacks and even told by one doctor that I was hyperventalating. My main complaint was fatigue. My doc had run test after test and had run into a brick wall. Only after I broke down in tears in his office did he sugesst a tilt table test and that is when I was diagnosed with Neurocardiogenic Syncope. Now after a year I am doing much better. I take midodrine, drink lots of water and gatorade and have learned alot more about my body and when to stop. I also take depo to stop my periods and that has helped tremendously.

hang in there and dont stop searching for help.

mary

[maryfw]

i have also found that eating on a regulat basis helps me too.

mary