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I am scared..need soemone with POTS to talk to


Guest Belinda
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Guest Belinda

I have all the average symptoms of POTS but then I have for the last week or so felt like my breathing is being comprimised..I feel awful and I am sorry to post such a negative post but I reallyh feel like I am going to stop breathing or I am being suffocated.

I have tried relaxation..deep breathing..ativan you name it. I saw PCp two days ago and she did ekg and pulse ox which were fine.

I would like to talk to someone on the phone isf possible because I am scared and I know those of you with POTS would understand a little better..I know this sounds desperate..but like I said I am scared and know if I go to the ER they will do the normal tests and nothing will come of it.

Belinda :)

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belinda DO NOT worry about what you post.. this pots is very hard to deal with at times and you need to be able to vent whatever you are feeling about it.. I PM you my number.

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Hi Belinda,

I have breathing probs as well... They don't come in a pattern or anything, just totally random... What did your PCP say about this? Maybe you can get some Oxygen to have at home for when you have these spells.

Jacquie

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Hi Belinda,

I just sent you an e-mail.

Kim

I have all the average symptoms of POTS but then I have for the last week or so felt like my breathing is being comprimised..I feel awful and I am sorry to post such a negative post but I reallyh feel like I am going to stop breathing or I am being suffocated.

I have tried relaxation..deep breathing..ativan you name it. I saw PCp two days ago and she did ekg and pulse ox which were fine.

I would like to talk to someone on the phone isf possible because I am scared and I know those of you with POTS would understand a little better..I know this sounds desperate..but like I said I am scared and know if I go to the ER they will do the normal tests and nothing will come of it.

Belinda :)

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Belinda,

Im scared too. I have felt like I'm having trouble breathing and didn't know it could be related to POTS. I just thought it was all anxiety?!? I wish you the best :) And hope that you find peace.

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I am sorry you are having this symptom - I am on the other side of the world, so it would cost an arm and leg to call me, however in the last 6 months or so, I am noticing that I am holding my breath involuntarily - it takes me a while to realise that I actually need to draw breath, and I am with you 100% on that fact that it is very, very scary. I worry that one day, I won't realise that I need to take a breath....

I'm discussing this with my neuro at the moment, however, it seems to be a symptom she is not aware of as yet.

Anywho, please feel free to PM me, if you want.

All the best,

Daniel

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Guest Julia59

Belinda,

I'm sorry your having scarey symptoms-----it is very unsettling to feel like your breathing is restricted in some way. Sometimes beta blockers can give us bronchial spasms---I know I get them from time to time. They are mild, but feel pretty scarey until they pass. I have had these for years.

Now i'm getting a restricted/asthma type feeling when I turn my head in different positions---I have no idea why............and don't want to deal with another doc to find out ..... I just relax and try not to worry----easier said then done. A pulmonologist saw some shadows on my lung x-ray---and ordered a sleep study----and I have not been able to finish it because I couldn't sleep for it. They still want me to finish the study because they saw loss of oxygen the couple of times I dozed into a light sleep for a few minutes. However, no rem/deep sleep.

You may want to get any pulmonary/cardio problems ruled out---and then have a neurological evaluation to make sure it isn't neuro related. I know a lot of dysautonomia patients get these spells from time to time----I think it is just part of the symptoms. If they continue to happen and you have a lot of these spells---I would get it checked out by making an appointment. The ER---is an option, but we all know how that goes.

Hang in there,

Julie ;0)

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My daughter has had this symptom before and a couple things that helped were to get into a chiller situation....turn down the heat...... lay down... get your feet up.... ..... relax as much as possible.....breathe in a brown paper bag [as if you're hyperventilating] .... eat ice chips..... call someone who can reassure you.... It's a horrible symptom and, unfortunately, not uncommon. I feel for you.

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Guest Belinda

Hi potsy pals..Well I went to pulmonoligist yesterday afternoon..and he doesn't feel that it is asthma or anything similar. He said maybe some bronchospasms, at any rate we will repeat a pulmonary funstion test this next week and see whaat it says.

I told him that i feel I am having to breathe heat/wierd sensations like my blood vessels in nose and throat are throwing off heat. And kind of spasms and he had nothing to say about that expect we could try claritin.

I think the breathing and the feeling of heat are related but I am not so sure now.

I wonder if it is vasospasms in nose and throat along the blood vessels in these areas maybe from the nervous system..or if I am outpouring norepenephrine/catecholemines.

Or just from reduced blood flow in these areas.

I thank you guys for not judging my post/it is just such an uncomfortable feeling..and to not run to the ER with it....uuuggghh.

My cariologist said I could go the ER or wait until MOn.afternoon to see him..so i guess for the time being I will wait it out and if gets worse I wil just bite the bullet and go.

Thanks again..all of you even the people who just took time to read my post.

Hugs to all of you..Belinda

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Belinda,

I also have breathing problems. Sometimes I feel like my lungs aren't filling up enough and I'm suffocating, I've learned this happens when my blood pressure is dropping and I can usually alleviate it by laying flat on my back with my legs elevated (which elevates my pressure). I will actually start panting if I don't lay down (and then I usually pass out).

I also have episodes where I feel like I'm having to "remember" to breathe, like my body isn't doing it naturally. I've tried to learn to ignore these since they haven't proved to be dangerous.

I would give you my number, but I can't talk on the phone much (talking aggrevates my symptoms). But I've sent you a PM with my email if you want to talk that way.

Hugs,

Lauren

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