Can't Breathe

[Kujiforo]

This is my scariest symptom with, whatever I have. It feels like I just can't breathe, a very smothering feeling. It normally occurs after I eat with/without chest or stomach pain, but sometimes strikes at random, daily. My heart rate increases right before the sensation. I have only passed out a few times from it. Chest pain usually just feels like someone has a finger and pushing it into my chest area. I've been to the ER with it, they just say my heart rate is really high and my blood pressure low, but they do not know why. It does not appear to cause damage to my heart, but it sure feels so awful.

Does anyone with POTS or other dysautonomia have this problem? Its my scariest symptom to me and hard to stay calm during an episode (Which can last from 5 - 30 minutes typically). I feel really drained afterward.

[mvdula]

I don't have this particular symptom - but do have something similar sometimes - chest tightness or pain. Just want to say you are not alone w/ the scary symptoms - and it is very hard not too get anxious/panicky when they happen, which of course just makes it worse!! Yuk!

[futurehope]

Kujiforo,

Are you taking anything or doing anything to keep your blood pressure up? It sounds like it may be getting too low at times?

[lieze]

The feeling that I couldn't breathe or my lungs tightening up was something I felt from the beginning and has persisted although it does seem better now.

It would almost feel as if my diaphragm was paralyzed for a while and I would have to mechanically breathe until everything relaxed again.

My doctor thinks I am histamine sensitive.

That feeling with my lungs has improved and I'm wondering if you would try a little Benadryl (I have the liquid) or another type of antihistamine if you would see a bit of improvement.

It maybe something to ask your doctor about and I have to take just a tiny amount.

I had started to wonder if I had asthma.

[Angelika_23]

I had breathing issues, and it turned out I was hyperventilating (I didn't know it!). I am on Klonopin, and that helps me with the breathing issues. I am not exactly sure why... One doctor thinks I am hyper POTS and the klonopin slows down the adrenaline production.

Good luck,

Angela

[Chaos]

Had several months with similar symptoms. At times I too was hyperventilating and knew it but couldn't do anything to change it (even trying to do meditation breathing) while it was happening. Other times, like after I ate or if I tried talking (especially while standing) I would have terrible "breath hunger" where I felt like I just couldn't get enough air. I think this is not an uncommon symptom.

[issie]

I do this too. A doctor at Mayo said that since I'm hyper sensitive, I also hyper ventilate. He recommended a CD by Andrew Weill called Breathing. It is supposed to help you learn how to breathe properly, especially when these hyper times occur. Haven't gotten it yet, but think it may be helpful. My breathing actually brought on a POTS attack when he checked me.

[Kujiforo]

The doctors haven't given me any medication, because they don't know what the exact problem is (and they don't want to "mask the problem") so I've pretty much just suffered for a year with all my symptoms.

I also hyperventilate. I can't seem to control it when I do, it is like my body naturally reacts this way. I also notice I have very poor breathing patters. I breathe chaotically without noticing, including holding my breath for some seconds, then breathing fast, then too slow. No matter how much I try to remind myself my breathing ends up in a wreck. Its disturbing because it FEELS like I can't get a proper handle on it. And whats worse is that I do not notice it until its too late, and then I feel like I'm starved of oxygen.

[lieze]

I notice I hold my breath too and I think anxiety is the reason.

It's pretty subconscious. I don't realize either until I've already done it and then at that point all I can do is regulate my breathing. One helpful breathing pattern I read on my anxiety group is 7/11 breathing. You do abdominal breathing. It says most of us with anxiety are usually shallow breathers. So you take a deep breath in for 7 seconds. I never make it the entire 7 but I count through it anyway and then breathe out for 11 seconds. Also try to blow out all the extra air that you are probably holding in the bottom of your lungs. It is most likely stale air. So do this over and over and you will get enough oxygen. I notice I swallow air too and end up burping it up. There is a name for this that I saw in the one textbook I have. Anxiety causes that also.

Another breathing technique is to close one nostril and take several cleansing breaths through the one side and imagine the breath going all the way to your toes. And then release that nostril and go to the other side. I think this is a yoga move but what I notice with this is how much nasal congestion I have. I sometimes feel like there is any air moving through.

A year is along time to go without any treatment. I have tried a few things so far but haven't settled on anything that I'm sticking with yet.

I'm going to start a journal! I think it might help.

[juliegee]

This is my scariest symptom with, whatever I have. It feels like I just can't breathe, a very smothering feeling. It normally occurs after I eat with/without chest or stomach pain, but sometimes strikes at random, daily. My heart rate increases right before the sensation. I have only passed out a few times from it. Chest pain usually just feels like someone has a finger and pushing it into my chest area. I've been to the ER with it, they just say my heart rate is really high and my blood pressure low, but they do not know why. It does not appear to cause damage to my heart, but it sure feels so awful.

Does anyone with POTS or other dysautonomia have this problem? Its my scariest symptom to me and hard to stay calm during an episode (Which can last from 5 - 30 minutes typically). I feel really drained afterward.

Hey Kuji-

I read in another post that you are often also covered in hives. Have you been tested for allergies?

Please check into Mast Cell Activation Syndrome/Disorder (MCAS/MCAD) Go to The Mastocytosis Society website to learn more: www.tmsforacure.org

Let us know if you think your symptoms fit.

Julie

[scarfgirl]

I don't have the pain, but I do have breathing issues. I haven't taken a full breath in almost a decade.

[Kujiforo]

I have been getting severe shortness of breath now...chest tightness, but not pain so much. More like I feel like I've been working out and pulled chest muscle and its so tight I can't breathe well so I hyperventilate. D:

I have not been checked for allergies specifically (only by being around/taking things and getting severe allergic reaction by trial and error), but I am allergic to many household cleaning products, and pollen, and most medications (which is another reason doctors are hesitant to put me on anything). I guess my body is just a wreck.

My birth control pills I take for PCOD seems to enhance my shortness of breath, chest pain, anxiety episodes....so I'm stopping them. My episodes used tobe once a week or less before I was in 2 weeks on those pills. I think they mess with my hormones too much. I've been on them nearly 2 months and since I have, things have gotten worse. So I'm stopping those and see if I see an improvement. My cysts grow and burst painfully while on them anyhow, so they aren't doing too good of job. Been on them 2 months already, I should have been seeing improvements. Instead, just got worse side effects.

If anyone has any more NATURAL suggestions to relieving PCOD symptoms besides birth control, I'll be glad to hear.

I also heard Paxil is great for both POTS/dysautonomia symptoms as well as reducing anxiety attacks. Its something I want to look into.

[ramakentesh]

I appears that sympo-excitation in POTS can mess up baroreflex responses and chemoreceptor sensitivity - resulting in postural hypocapnia, breathlessness and worsening cerebral vasoconstriction and anxiety.

[kayjay]

What pill? I am on kariva ( mayo clinic prescribed) but YAZ sent me to the hospital for a week. Not all pills are the same.

[Kujiforo]

I was taking Seasonique. It caused my tachycardia bouts to nearly double in frequency. I'm on my cycle now that I have stopped and its been the worst two days ever for me. I went to the ER yesterday looking for some relief. The doctor said my short of breath is caused probably both by the pills but also from stomach issues. They gave me a GI Cocktail and it helped tremendously. My GI appointment is still not for another months. With all my symptoms, I'm holding on by a thread to make it through another month. The ER doctor told me I may need to have my doctor push tests forward due to my pain and discomfort...he suspects Fibromyalgia, and that scares me. But he says all my symptoms seem to really reflect that, stomach issues and all.

Needless to say, I'm still feeling horrible. No energy...feel like I can't breathe sometimes, pain all over. Its awful.

[arizona girl]

Kuji, when you say you have pcod do you mean polycystic ovarian syndrome? Is the only way your docs have treated it, is with oral contraceptives? I have pcos as well. It is an endocrine disorder and should be treated in a similar manner as prediabetes. I am on glucophage for it. The cysts are caused by an overproduction of insulin and you can have elevated male hormones as well. BCP were the old school manner of treating it before they understood it was an endocrine disorder. I too could not tolerate BC pills.

I also after having my ttt, skin biopsy for neuropathy and standing and supine catecholamines can see a pattern how all these things are connected. In my case the neuropathy keeps the vessels from contracting when I stand, the blood then pools, causing my norepinephrine to triple on standing in an attempt to get blood up to the brain. My supine epi and norepi are also elevated. These elevations cause the liver to produce excess glucose thus causing the endocrine dysruption and pcos. I have had weight gain and high cholesterol that is not caused by my diet. That is my theory on whats happening, but for the first time I can now see how everything symptom wise is connected. It makes logical sense for the first time.

[issie]

Arizona Girl,

How does the Glucofage make you feel? Do you have side effects from it?

I think I had PCO, but it was never diagnosised. I had a hysterectomy at a young age. I have high test. levels even now though. I too have weight gain and it isn't diet related. Did your neurologist figure this out?

How are you doing since your plasmaphereies? Do you feel any better?

[arizona girl]

Glucophage can cause some digestive issues, but other then that it is an old good medicine. Test levels of what? I had very elevated insulin found during fertility work up, many years ago. Hysterectomy doesn't cure pcos as it is an endocrine disorder that effects the reproductive organs. No my neurologist has nothing to do with it.

I have had some signs of improvements and changes with the pheresis, I still feel unwell on my feet. It is still to soon in the treatment course to see end results yet, plus with the cellcept being added in I may be getting side effects from that. There are enough improvements with no severe side effects so far, not to continue for now. I will post updated news on my treatment when I have something new to offer.

Arizona Girl,

How does the Glucofage make you feel? Do you have side effects from it?

I think I had PCO, but it was never diagnosised. I had a hysterectomy at a young age. I have high test. levels even now though. I too have weight gain and it isn't diet related. Did your neurologist figure this out?

How are you doing since your plasmaphereies? Do you feel any better?

[HopeSprings]

I have this sensation too -- it's a tightness or pressure in the chest, like I am being squeezed from the inside. It's right around the sternum area and feels like you cannot get a full breath. It IS scary. You mentioned this often happens after you eat -- same here. I feel it at other times, but definitely happens every time I eat (or drink sometimes) and then I feel really spacy dizzy. I wonder if the chest sensation is really gastro related?

[Guest maia]

I have this. Sometimes now i think my body has forgotten how to breathe beause of all of this. Have you had the location of your kidneys checked while vertical? I started a topic called 'pots check your kidneys...'

[Freaked]

It does sound like episodes of low blood pressure, which can be brought on by eating in some dysautonomia people as blood diverts to digestion. Your heart goes fast to compensate and you can get upper body pains. I read of a girl with POTS who passed out every time she ate for a while. But have you been to a cardiologist or had a holter or event monitor to rule out arrhythmia?