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I'm New, And In Need Of Some Help!!!!


Steven9011
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Ok, I'm sure I have POTS, because for the past couple years when I stand up from sitting down I get light-headed, my heart beat really fast and my vision goes very dark for a second or two.

But for the last year or so I notice that when I stand up I've been getting a new symptom which is a pounding headache, I feel a lot of pressure in my head and I can feel my heart beating from my chest up into my head and it's been really worrying me lately.

I went to the doctor and explained to him all my symptoms, but he kept telling me it was normal, but I knew it wasn't because not a lot of people I know has this happen to them.

I've had a ct scan of the head so I know it's not caused by a tumor or anything and I was told that I don't have signs of increased intracranial pressure so thats good.

I just wanna know if this is normal or if anyone has had this symptom with their case of pots because it has been worrying me more and more. Is there need to worry?

Thanks in advance!

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Guest tearose

Hey Steven, I'm a little spent on energy but I'll try to direct you...

yes, we get very lightheaded and heart pounds and this is part of our symptoms.

Please go to the main pages and read, read, read! Grab a cup of tea and do yourself a favor and also go through the archives. You may find behavior mods you can do to help yourself. If you are having problems getting through your day due to your symptoms, get yourself to an intelligent doctor educated in the autonomic nervous system and have a complete work up.

take it easy, be pro active, tearose

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Hi Steven,

Welcome to the board. I do get the kind of headache you're talking about sometimes, and have been told they aren't dangerous. Mine are usually after eating, and eating smaller low-carb meals frequently has helped.

Have you had a tilt table test? That's really the best way to find out whether you have POTS. And tearose is right that there's a wealth of info on potsplace.com, including treatments and POTS doctors in your area who might be able to help.

-Rita

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Guest Julia59

Hi Steven,

I just popped in to say welcome to this discussion forum! You have come to the right place for support and for help in answering your questions.

Although the majority of us are not medical professionals---we are experienced in the day to day struggles with POTS and autonomic dysfunction. There is a lot of valuable information on this web site. I also think you need to find a knowledgable doctor who is familiar with POTS in your area. Not a lot of family Docs---primary care physicians (PCP) know much about ANS disorders.

You need a PCP who does, or another Doc who specializes in ANS dysfunction. There is a list of Doctors on this web site----here is the link:

http://www.potsplace.com/physicians.htm

Please hang in there---and know that we are here to support you.

Take Care,

Julie :0)

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Hi Steven:

Welcome to the site! It sounds like you'v e come to the right place....I'm so sorry to hear about your suffering....it sure sounds like POTS to me...I'm not a doc but I have had POTS all my life and experience what you describe every day.

I agree with the others...a tilt table test is a good idea....also, checking the physicians list on the site as well. Do you live in a large enough city that you can find an electrophysiologist (cardiologist who specializes in the electrical stuff)...if not, it might be worth a trip.

Good luck and please keep us posted? We are all here to support each other.

Kristen

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Hi Steven! Welcome!

Sorry you're having this trouble! I don't have much to add to what the others have said, but agree with them completely.

Our symptoms are not normal ~ at least in terms of the general world population. Do actively seek out help -- I found an electrophysiologist at UPenn who was able to give me an initial diagnosis and guide me towards the most appropriate places for further evaluation and treatment.

I wouldn't worry about the syptoms, though. I've experienced all the things you've mentioned and have checked out okay on cardio tests, brain MRI & CT scan, etc. I get the headaches frequently, but more often when taking meds like Florinef, when it becomes almost constant. Are you on anything right now that could be contributing to it?

Good luck on the dysautonomia research -- you've come to the right place! Please ask all the questions you want! We've all been in similar shoes at one point or another!

Angela

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Welcome, Steven. Sounds like you're one of us. :)

I get those headaches... And sometimes, sensations like my head is so pressurized, it's going to POP or something.

Hang out here for a while, educate yourself, and get ready to roll with the punches. This condition can be worrisome, but there's lots of hope. How do you take care of yourself?

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Thank you all for the reassurance and the help with this.

I just get so bent out of shape over this because I thought something had to seriously be wrong, but you've all reassured me. I will be talking to my doctor about this and see what he can do. But your replies have stopped me from going crazy, so thank you all!

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Hi, I'm Miriam welcome. I too have this symptom. I would check my blood pressure when the headaches start-- you will probably find its low, mine was...

Something that might help is to keep a journal of symptoms, that way you can see if there are any patterns that you can see. It helps alot.

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Steven,

I get really bad headaches sometimes like you described. I get them if I stand up too quickly and I also get them when I wake up from passing out. Standing up slowly helps - either the headache won't come, or it won't be as severe. Also, when it does come, if I tilt my head back as far as I can the headache goes away fairly quickly. I don't know if that works for anyone else, but it might be worth a try.

Rachel

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