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any comment appreciated


Foxyblue
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Hey everyone,

I'm new to this whole thing so I guess I'll just lay out my whole situation and if anyone can offer anything, I really would appreciate it. Pregnant with my son in 04 I begain having a hard time going up steps, getting very out of breath with pulse racing, all that. Doctors looked at me like I was crazy, you know...pregnant girl trying to get attention. They really made me feel like maybe I was crazy. They tested for asthma, anemai. I was fine. Delivered my son in June 04, symptoms persisted. Felt near faint especially on hot days going up stepd. Picking up my son would spark all the sob and rapid heartrate. Going to amusement parks was not fun with me. I was such a crabby, miserable person, The heat would just get to me! Along the way I started to really have trouble with my stomach. Cramping, Bloating like I've never experienced, etc. Trouble with my bowels. I also developed an "eye allergy/ infection" The Dr. guessed anyway. I was on all these eye drops and could no longer wear contacts. As my sympotms got worse, I was referred to a cardiologist. He said it was anxiety. And I could see from the look in his eyes he thought I was a drama queen. rxd meds. I got a second opinion from another cardiologist and he said it was svt. But after trying medicine from him he referred meto an electrophysiologist and he did the tilt test, and alas, two years later I have POTS. I never thought these symptoms could be related. But it is starting to feel that way.

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Welcome BriBri,

I am sorry that you have to be here, but you are where there are many people who are in the same position as you are. There is a lot of support and good advice here. Many many of us have some of the same symptoms if not all as you do. I have not been totally diagnosed as of yet. I am waiting to see if I can get seen at Vanderbilt. The only thing that I do know is my life has changed drastically. I am not the person that I used to be. At least you were diagnosed relatively early. I have been going through all kinds of tests for over a year. My first doctor told me I was a hypochondriac, even though he had put me in the hospital several times due to my b/p dropping drastically. Now the ER treats me like I am something they stepped in in the parking lot. So now before I go to the ER I have to call my Cardiologist first. He will then call ahead just so I will get decent treatment. The last time I was there. I was having a stroke, and they treated me horribly. Then they sent me home. My Cardiologist was furious. But my Cardiologist is in another town. There are no good specialists in this town, and very few good PCPs. My PCP wont even touch anything associated with this disorder she always sends me to a specialist. I hope that you will get better treatment where you are. It is a disorder that very few doctors know anything about. So look up a Neurologist and ask if they have experience with Autonomic Dysfunctions, this will save you a lot of time. Hope you find some answers. Vanessa

Edited by Sunfish
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Hello BriBri,

I am sorry that you have developed POTS.

There is lots of help for you here. If you have not already read the information about POTS or the newsletters on the other parts of this site, you can start there to learn more. Especially read the "What Helps" section.

Unfortunately, there are not many docs who know a lot about POTS, so becomming your own advocate is one way you can help yourself.

As for the hypochondriac label, a lot of us with POTS have had that one pinned on us. It often means the doctor doesn't know is really wrong. I believe there are darn few real hypochrondriacs in this world. Many people who have been labeled as such have an illness that is still unknown--just my personal belief.

Just keep learning and being your own advocate and you will make progress.

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BriBri,

Welcome to the forum! I am sorry that you have been through so much and that it's been such a long ordeal for you getting diagnosed. Please feel free to ask any questions you have here and we'll try to support you as much as we can.

Hope we can bring you some encouragement during this diffucult season,

Lisa

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Hi BriBri,

Welcome to the forum.

I can only say that what you have been through seems to be fairly common if you read the posts on the forum. My case was somewhat different as I have both an anxiety disorder and a heart condition - but the prescribed meds didn't seem to be doing what they should - and only by luck was a referred to a neurologist as my doctor feared I may have a brain tumor - the neurologist he referred me to has a special interest in dysautonomia, and apart from testing me for everything under the sun also ordered a tilt table test, which picked up the POTS immediately. And once I learnt a bit about POTS it explained a lot to me, and helped explain the strange symptoms I had been having.

My GP and cardiologist had never heard of the condition, so I printed out the info on the DINET website for them, and also gave them the site address - I now have the leaflets to give to anyone that I need to explain it to.

In my experience, it is a strange disorder, and in my case I can feel fine one minute and terrible the next. The symptoms for me can come and go and change very quickly.

If you can give your doctor some info on the condition, and see a neurologist, you may get some clearer answers. There are some medications available to help with the symptoms of POTS, which you would need to discuss with a specialist.

I wish you the best. You will find that this forum is a God-send for helping with everyday questions etc.

- Daniel

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Hi BriBri,

I can relate to your experience. POTS symptoms alone can make you feel terrible, but when you have professionals (and/or friends, family, etc.) questioning whether you are really sick or not...that adds a whole other dimension to the illness. I'm glad you were finally diagnosed so that you can get the help that you need. Also I'm glad you found this board. Welcome!

Kristen

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