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cma
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HI everyone,

I am new to this site. I hope to find knowledge, support and just share my experience.

I've been sick for more then a year now. It all started with severe dizziness after the surgery for my impacted wisdom teeth. At that time the anesthesia was to blame. After that I had episodes of panic attack, well at least I was told by a doctor it was that. Then unexplained pain in my calves which I still get now and then until this day. My GP told me I was just anxious, but after not getting any better for a few months and a blood test done I was diagnosed with thyroid problems, hyperthyoirdism at that time. High heart rate, fatigue and adrenaline rush all were symptoms of hyperthyroidism. I am autoimmune and at this day my thyroid levels are within normal range, but I don't feel any better. I had days when I was so tired that I could only drag myself to the bathroom and back to bed. Now my thyroid is no more the reason for my symptoms, but they are still present high heart rate which is even higher when I stand up, fatigue, lightheadedness, brain fog, anxiety, calve pain, cold hands and feet, symptoms are worse when it's warm. My first guess was anxiety maybe even agorahobia. I don't feel safe to go anywhere alone, because for some reason I get tired and lightheaded very fast. Bright light in the stores and noise make it worse. I was refered to a new doctor, endocrinologist and he explained to me that he doesn't know what is wrong with me. My heart rate is elevated plus there is some kind of abnormality in my ecg which he didn't explain. He ordered more blood tests and after me mentioning POTS he smiled and told me that I did a good research, but he doesn't think that I have it, because my bp is not low, my heart rate is elevated even when I sit and beta blockers wouldn't help me. I don't know why, but I didn't have anything else what to say. He told me he wants to wait with ttt and wants to do EP instead and try to figure out what is wrong with my heart. I never had heart problems before, I was healthy and fit, a personal trainer before all this happened. When I got home I was so upset that I didn't stood up for myself better and now I have to wait 2 months until the next appointment, because that's how it is in Ireland. I feel devastated . My life has stoped, I've lost myself somewhere along the way, everything that I believed proved to be wrong. I thought if I eat good, take care of myself and exercise I will be healthy for many many years. But life proved me WRONG. I don't exercise I am afraid to make everything worse until I know for sure what is wrong with me.

I am so scared at this point about my life. What if it won't go away or get better. I want to have a normal life, have kids and be able to take care of them, I wan't to travel, I want to spend a day without worrying about my health and feeling that my life is over. I understand that probably the majority of you feel this way, but this is still so fresh for me, so raw and painful. I guess I just wanted to share my feelings, because sometimes I feel like an alien. There is a life out there where ppl have kids, and careers and parties with music and drinks, and there is me without all this and only with loneliness left still waiting and hoping.

Sorry that I started on this sad note. I am not always like this, but probably today is the day to feel this way.

I would like to get any ideas or suggestions.

Thanks for beeing here and supporting each other in such a beautiful way.

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{{{{{{{{{{{{{{gentle hugs cma}}}}}}}}}}}}}

I thought if I eat good, take care of myself and exercise I will be healthy for many many years. But life proved me WRONG.

It is true most of us believe that things will be a certain way. We make assumptions that we will wake up in the morning. That we will go to work. That our LEGS will WORK and carry us anywhere and everywhere we need to be.

Then for some us ... we realize the illusion of our situation. That none of us are walking on solid ground. That each of us are skating on thin ice. And of course that things can change in an instant. But the good news is that things CAN and DO change. Sometimes we like the changes (and we accredit them to things like eating well and exercise) and sometimes we don't like the changes (and we blame ourselves, or our doctors for our situation). But maybe, things just CHANGE.

One thing we know, is this moment. How things are right now. And it is only in this moment that we can build our life. Letting go of the illusion that we can control everything (or anything in our environment) can actually be very empowering. When we can accept without guilt or blame that this is where we are, we can focus on places that perhaps our "busy" life before did not permit us to examine. And in this curiosity may lie a new dimension and opportunity for wellness.

Welcome to the adventure. I know it is not one that you would have chosen. But it IS the one that you are on, and you are among friends and people who understand how difficult this transition has been for you. You are also among pioneers who have led amazing lives even with the health challenges they have faced.

And of course we are among good company to meet you.

Good luck on your healing adventure. And Welcome.

~EM

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Hi, welcome to the forum. I just wanted to let you know that not all people with POTS/ Dysautonomia have low blood pressure. I am 19 years old , about 5'6" and weigh only about 99 lbs. I have very high blood pressure. Ive been on betablockers for the last 3 years, but only one has actually worked for me. Some dont help at all. When im not on my BB I start to go into hypertensive crisis. I also have Supraventricular Tachycardia, and even when I have been on beta blockers my heart rate has been in the 160s. Thankfully the beta blocker that I'm on now is working much better for my heartrate. Ive been sick for 4 years now. Some days are better than others. I still get discouraged and frustrated but Im leaning on the fact that God is my strength and He will see me through. This disease has taught me that its the little things in life that make it all worth it. EarthMother is right. We have this moment in time that we've been given and thats what we need to focus on. I hope that you are able to find encouragement and support from all of us here. Not all of our stories are the same, but we are able to understand a lot of what eachother's going through. We're here for you. :(

The LORD is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song. Psalm 28:7

- Candace

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Hi CMA,

welcome to the forum, I'm glad you've found us - this is the place to find out lots about autonomic problems. There is a wealth of information that can be found on both the main DINET website and by searching the forum for old topics - but if you come up with questions / can't find answers then please ask and hopefully one of us will be able to help (or at least commiserate).

I'm used to the NHS in England so I know what you mean about waiting for follow up appointments.

The diagnosis of POTS is based on a change in heart rate (HR) from lying/sitting to standing. If you have a HR monitor / automatic BP machine or are well enough to count your own pulse you can do a "poor man's tilt test" at home. Lie down quietly for several minutes and measure your HR, then carefully stand up and keep checking your HR. In POTS the HR rises by 30/min or more, or goes up to >120/min usually within 10 minutes of standing up.

I have heard some doctors say that POTS has to have low BP and other doctors say that it can't have low BP! Basically whilst BP is useful it is only the HR response to standing that is used for diagnosis of POTS.

If you have a high resting HR but it goes much higher when you stand then that would fit with a diagnosis of POTS.

I have found that some doctors don't mind getting a brief letter from their patients (they know that we forget to ask questions during appointments). It would probably be okay to write to the doctor asking what the ECG finding was and if your rhythm is sinus tachycardia or if it is an abnormal rhythm. (POTS is associated with sinus tachycardia, but some of us get abnormal rhythms as well!). If you do the "poor man's tilt" as above you could put the HR (and BP if you can get them) readings in a table/graph and send it to the doctor too.

Good luck on your adventure of discovery!

Flop

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I've been sick for more then a year now. My life has stoped, I've lost myself somewhere along the way, everything that I believed proved to be wrong. I want to have a normal life, have kids and be able to take care of them, I wan't to travel, I want to spend a day without worrying about my health and feeling that my life is over. I understand that probably the majority of you feel this way, but this is still so fresh for me, so raw and painful. I guess I just wanted to share my feelings, because sometimes I feel like an alien. There is a life out there where ppl have kids, and careers and parties with music and drinks, and there is me without all this and only with loneliness left still waiting and hoping.

I've had mild dysautonomia symptoms during adolescence that have progressively worsened after a car accident September '06. I had my first tachy episode just after the car accident. I had to quit my nursing job and have two hip surgeries in June '07 and January '08 because the accident tore cartilage and ruptured ligaments. Symptoms became increasingly debilitating until June '08 when my skin started burning and fatigue really interfered with me doing much of anything. Now I spend 90% of my days in bed, laying down. None of my local doctors know what to do with me, but thankfully I am able to go the Mayo Clinic in a couple weeks to see a specialist.

I have chosen to not see my life as being "stopped." It certainly is easy to feel that I am without purpose, and to focus on what I have lost, but I try to do whatever I can. Last fall I was able to cross-stitch Christmas gifts for my mom and mother-in-law. Now I find it too difficult to focus and my hands hurt too much, so I started writing a book during the hours that I'm not so tired. Even so, I believe that God is with me and he hears me when I'm tired or frustrated. I also enjoy staying connected to family and friends via phone or internet. I really only have one good friend who has stuck by me, but her friendship is very precious to me.

I really think it's a grieving process when you go through chronic illness, disability, loss of friends, etc. It takes time, and I have been helped by seeing a therapist every couple weeks to talk about dealing with all this. I understand how it feels to be so helpless to change anything for the better. I guess what's also helped me is to try to be thankful for those loved ones who have stuck with me and to cherish my relationships with them.

I don't know what your options are in Ireland, but there are several members here in the UK who might have suggestions to help you get better medical treatment. You are not alone. I'm glad you found this group! Janie

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CMA-

My heart breaks for you. You are on your way to sorting this out. Keep posting, researching, and asking questions. You're among an amazing group of folks who will do their best to help you regain your health. You didn't do anything wrong, you were probably just prone to autonomic issues and the surgery set if off. I'm sending hugs across the pond and praying you'll soon get to a doctor who will helpyou feel better.

Julie

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cma--welcome to our group. You have found a place where you are accepted, cared for and understood. This forum has been wonderful for me. The support is amazing. My daughter was diagnosed at age 19, and has had lots of problems from various illnesses since. The main thing is never give up and never give in. I know its scary, and seems dreadfully unfair, but you are among friends here who will help you with information and caring. Best of luck with your treatment. And I truly hope you have a doctor with the knowledge to treat you properly.

Gentle, healing hugs from across the big pond -------Susan :(

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yeah i know how it can seem - that its not going to improve and your life is going to be difficult. WHen its bad it will also pretty much shoot off addrenaline all day long to try and maintain blood pressure and this will make you anxious, and then you get anxious about being anxious, etc.

Are you on medication? The anxiety with POTS is sympathetically mediated - so that means that if you take beta blockers they will probably help to some degree.

In my recent POTS crash i had constant anxiety for about three months - I dampened it down with beta blockers and then slowly withdrew the dosage and tghey tend to increase the dizziness.

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Welcome, I am sorry that you are here with us. :ph34r: But if there is a place to be with "this" it is here! There is so much support and understanding and knowledge on this forum, it is truly incredible. Take heart, it usually does get better. The not knowing and the doctors patting you on the head saying "there's nothing wrong," is infuriating, frustrating and can drive you to the brink of despair. Learn as much as you can, we have all found out that we are our own best medical advisor and that few doctors know ANYTHING about dysautonomia, and those that do still don't understand it. Becoming pro-active in your own care can give you a sense of control that you lack right now. Get ALL of your test results, keep them in a binder and organize yourself. You may want to keep a log/symptom diary, it could lead to insight into what makes you feel worse or better. Search this site and ask all the questions you want. We are here for each other, so welcome!

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I wanted to thank everybody for such a warm welcome. I know that you all are amazing people with knowledge and experience and I hope that in this journey I will learn and will be able to share some of my wisdom as well :ph34r: I've already used one of the advices, wrote a letter to my doctor today, lets see if that will help somewhat.

I'm amazed with the faith that some of you have, that inspires me not to give up and keep searching and hoping that everything is ok and will be ok no matter how it will turn out to be in the future.

Hugs to all of you and again thank you for sharing your experiences.

Peace,

cma

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