bellajulz Posted January 12, 2011 Report Share Posted January 12, 2011 I was diagnosed with pots in Dec. 08.' Which I pretty much have classic symptoms, I am a fainter which led to a quick diagnosis for me of only 2 months. I went to a new neurologist today who gave me his diagnosis of 'Hyperventilation Syndrome '. Which pretty much has same symptoms as pots, he wants me to stop all meds and start anxiety med. He said to think it over and see him next week. Has anyone been given this diagnosis? Any and all input would help as I feel so lost right now. Quote Link to comment Share on other sites More sharing options...
lieze Posted January 12, 2011 Report Share Posted January 12, 2011 I've never heard of it before, I'm going to look it up.I did read something interesting today in my anxiety disorder group.One of the leaders indicated that anxiety can cause two changes in breathing.One is hyperventilation, the other is hypoventilation.I think I'm a breath holder.When I stand up I feel pressure in my chest and I feel myself push down almost on my diaphragm to counter it and it seems as if it depresses my breathing.I'm doing something weird I can tell and then the result is I can start to feel as if I am not getting enough oxygen to my brain.I guess I'm open to anything--I would be concerned if he removed your POTS diagnosis though and then somehow that adversely affected you.I do believe when it comes to administering medications and things like that it is good for our health care providers to know we at least "might" have some autonomic dysfunction and can be very sensitive to meds.So as far as treatment personally I would be open to trying different things but then if you try it and it doesn't help---I would want my POTS diagnosis back. Quote Link to comment Share on other sites More sharing options...
lieze Posted January 12, 2011 Report Share Posted January 12, 2011 Do your midodrine and propanolol help you?Did it decrease your syncope episodes?I have hyperventilation syndrome...I do it all the time...just didn't know there was a name for it.I couldn't get through the article without starting to hyperventilate. Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2011 Report Share Posted January 12, 2011 That was said to me before the POTS diagnosis. Did you have a tilt table test done? You definitly need that to confirm the POTS and it should last for about 45 minutes. I had mine with cardio dept. at Mayo. There are breathing issues involved and you may have both. But, I agree - don't let them throw out the POTS diagnosis until you're sure. Do the meds help? If not, taper S L O W L Y off of them and see if there is improvements. Sometimes the meds can mess you up worse than the illness.It was suggested to me to get the CD from Andrew Weil called "Breathing". Haven't done it though. Taking long breaths make me allot worse. Quote Link to comment Share on other sites More sharing options...
bellajulz Posted January 12, 2011 Author Report Share Posted January 12, 2011 Thanks ladies for your replies... I have had 2 ttt one in dec. 08 and jan. 09 at mayo both were positive within 10 minutes because of vitals and I passed out in one. The doc yesterday said it was because of stress of having testing done. As far as meds I was passing out daily and midodrine has helped to where I have been able to control fainting better, I've called it my lifeline. The other meds I do see improvement though my health isnt the greatest, Im not sure if I should go forward with this doc??? Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2011 Report Share Posted January 12, 2011 THINKING . . . . .NOT!! Unless, he's willing to agree that two tilt test can't be wrong. There can be both issues involved. We've had many discussions about how we all breathe wrong. But, you had two test showing POTS. It is a syndrome - and hyperventalation syndrome could just be one piece of the puzzle. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 12, 2011 Report Share Posted January 12, 2011 If you are having some success with the meds you are on, I'm not sure I would be stopping them. Especially if you are a fainter. After all 3 of my TTTs I had symptoms of hyperventilating and yet, each time a nurse or even a cardiologist said "but you're not hyperventilating." Also, with some of my BIG flares I do have times where I KNOW I'm hyperventilating but it really feels like it occurs in response to something else. It feels like something centrally is messing with my breathing and hyperventilating is my body's attempt to compensate for it... not that hyperventilating is the CAUSE of the problem. I think that hyperventilating may be part of this whole thing, but like Issie, I'm not sure it's the cause. I looked into hyperventilation syndrome when I was wondering why I kept hyperventilating. The problem is that so many of the symptoms of ALL of these things are so general and so common, it's really hard to know what's what.I was sent for a whole series of pulmonary function tests when they were still trying to figure out what was wrong with me. The doc looked at my numbers, and my CT scan and said "I wish I had lungs that looked this good." So maybe you'd need tests other than a basic pulmonary function series to tell if you're hyperventilating. I don't know. But, if you are doing fairly well on your meds, I'd be cautious of stopping them. Of course, since we're all different, your experience will be different from mine. I'm not a fainter for starters. So these are just my thoughts on the topic. Good luck deciding what to do! Quote Link to comment Share on other sites More sharing options...
bellajulz Posted January 12, 2011 Author Report Share Posted January 12, 2011 Thanks for your input... I don't hyperventilate or have breathing issues prior to fainting only after. I just feel frustrated, though my family is happy at the possibility if my not having pots. I really don't buy it, but am so tired of being sick. This appointment was my last shot at conventional medicine... just needed to get some input. Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2011 Report Share Posted January 12, 2011 Some of the meds given for hyperventalation syndrome are the same ones used for POTS. I was just reading e-medicine on the syndrome. Maybe there is a cross-over. Did they do all the labs etc? Check out pulmonary and heart? It mentions that the hyperventalating causes your body to become too alkaline and that breathing into a paper bag is not the right thing to do and it could make things worse. It also says that the hyperventalating could cause heart issues. Do you feel that you have anxiety or some of the other things that go along with this syndrome - OCD, panic disorder, agoraphobia? I still think - it might just be a piece of the puzzle. Not the whole picture - even if you do have these things. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 12, 2011 Report Share Posted January 12, 2011 Some of the meds given for hyperventalation syndrome are the same ones used for POTS. I was just reading e-medicine on the syndrome. Maybe there is a cross-over. Did they do all the labs etc? Check out pulmonary and heart? It mentions that the hyperventalating causes your body to become too alkalie and that breathing into a paper bag is not the right thing to do and it could make things worse. It also says that the hyperventalating could cause heart issues. Do you feel that you have anxiety or some of the other things that go along with this syndrome - OCD, panic disorder, agoraphobia? I still think - it might just be a piece of the puzzle. Not the whole picture - even if you do have these things.Thanks for posting this...great info. I read it and thought "wow, I've experienced these very symptoms!" But I agree with issie above...this is only one piece of the puzzle &/or the chicken/egg argument (which came first?). Hang in there and if you have a gut feeling that you aren't jiving with this doctor, let him go. You really need to feel confident about the one that is treating you. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted January 13, 2011 Report Share Posted January 13, 2011 I was just taking my son to the dentist today, and I brought along some articles she asked for regarding our medical conditions (why is it that the only medical person willing to take an interest, who cares what's going on and how she can help, is my dentist?). Anyhow, I was looking at the dental article re POTS and they mention hyperventilation in POTS caused by lack of oxygen to the brain (due to POTS, not anxiety) several times. There is also an article on the dinet site under research by Dr. Raj about the fact that POTS patients appear anxious (who wouldn't, feeling like this?) but actually having lower scores on anxiety scales. Here's the dental one:http://jada.ada.org/cgi/reprint/137/4/488 Quote Link to comment Share on other sites More sharing options...
bellajulz Posted January 13, 2011 Author Report Share Posted January 13, 2011 Thank you.. apreciate it.. as the days pass I am realizing that if this is an issue I may have its more of a secondary .. as I do not have breathing issues prior to fainting its immediately after. I do not feel like an anxious person, but im sure I probably have some traits free everything I've gone through.. I will check out the article and post again when I see a new Nuerologist on tues. Who is supposed to advised 1st doc if he agrees with new diagnosis. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2011 Report Share Posted January 13, 2011 I was just taking my son to the dentist today, and I brought along some articles she asked for regarding our medical conditions (why is it that the only medical person willing to take an interest, who cares what's going on and how she can help, is my dentist?). Anyhow, I was looking at the dental article re POTS and they mention hyperventilation in POTS caused by lack of oxygen to the brain (due to POTS, not anxiety) several times. There is also an article on the dinet site under research by Dr. Raj about the fact that POTS patients appear anxious (who wouldn't, feeling like this?) but actually having lower scores on anxiety scales. Here's the dental one:http://jada.ada.org/cgi/reprint/137/4/488Sarah,That's one of the best articles I've read on POTS. The only thing left out was Mast Cell - don't recall seeing that. Thanks for posting - will definitly go in my keep list. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted January 14, 2011 Report Share Posted January 14, 2011 Hi Issie - I thought it was a pretty decent summary too. It does mention mast cell briefly, under "Medical Treatment", warning against beta blockers. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 14, 2011 Report Share Posted January 14, 2011 Sarah....I also loved the article. Thanks for sharing it here! Quote Link to comment Share on other sites More sharing options...
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