I Just Can't Breath

[all4family]

Hi Everyone,

I am sorry to come here like this, I just don't know what to do. I know everyone says go see a doctor, but I have had 2 Pulmonary function tests, 2 chest ct's, and about a zillion x-rays. I really don't want to get anymore radiation, and all the doctors tell me is you have some air trapping, but it is because you are overweight. I would take this as an answer, but I know that I had the same breathing problem when I was "anorexic". I have told them at the Mayo clinic about the breathing problem, and seen a pulmonologist, (my second one), and that was my second lung function test. I know that shortness of breath is supposed to be a POTS symptom, but does anyone know the reason for this? And how do you know when to fight the doctors and say no there is something wrong here. I really ran out of fight a couple of years back. Do you guys think my breathing troubles are due to POTS?? What do I do?? Can muscle tightness make breathing more difficult? I am tired of feeling like I am suffocating! I know you guys aren't doctors, but I have learned more good information from you guys, then from doctors, who just don't know what is wrong. I fear having lung cancer, but hope that with having the last ct about a year ago, and a special one for sarcoidosis, about 3 months ago, that there is nothing to worry about. If I lay down, and am really relaxed my breathing is usually fine. But I always have a cough. But right now if I am up for even one minute I feel like my lungs will collapse! uuurrggghhh.....I know that others on here have breathing troubles. Does it seem really bad to you? Does it scare you sometimes? Can stress cause this? I do everything I can to keep my stress levels low, but you know life! Thanks everyone for taking the time to read this. I hope you all are having a better day!

Suzy

[erikainorlando]

Suzy -

I am sorry to hear your difficulties....I used to wake up at night gasping for air (when I was trying to still work). Many times my breathing is bad...especially at the end of the day or when trying to do anything....it is very much POTS related for me (I figure...but I am no Doc). I am very thin. And yes...I have heard it all too from "you are deconditioned" - soo I told them "but I was playing tennis 3 months ago....before I got a virus!!"....they never listened...but my POTS docs listen...

Good luck.

Erika

[all4family]

Hi Erika,

Thank you so much for sharing that with me. It is funny, I can see a symptom on the list, but when I hear from someone else first hand that they experience it too, it makes it much more real. I know it is a vicious cycle for me. I try and do something, and get short of breath, then I wonder well could this really be from something worse? Then I am stressed, and that makes my breathing worse, and so on, and so on. The support means a lot to me. Some doctors just don't understand how important what they say is to us. I am glad you have a POTS doc that listens! That is great. Now if we could only breath better! Take care, and thank you for sharing that!

Suzy

[vemee]

I feel like I am suffocating lying down at times. It has been worse since I was put on a beta blocker. There are times when I feel like I need to take a deep breath and have to make several attempts before I can take one.

[all4family]

Hi Vemee,

My breathing problems really started after I started a beta blocker, (and other drugs) . My doctor from Mayo said beta's are notorious for this. It used to wake in the middle of the night gasping for air. Have you mentioned that it got worse after the beta to your doctor? Just wondering. I feel like that too with the feeling like I need to take a deep breath, but can't. It feels as if my body has forgotten to breath, even though I haven't! Thank you for sharing that with me. At least if I am not alone, I feel less stressed, which ultimatly helps me breath better. Breathing difficulties cause me tooo much stress! Thank you for sharing.

Suzy

[babettess]

Hi Suzy,

I too have trouble breathing at times. I struggle when I try to exert myself and also at times for no reason. When I haven't exerted myself, I have found that what helps me the most is to make sure I am breathing with my diaprahm (or belly) and not my neck and chest muscles. I make sure my belly is rising on inhalation and lowering on exhalation. I seem to find myself breathing too fast when this is happening. To get my breathing back to normal I try this "exercise". I count to five slowly as I breathe in to make sure I'm not breathing too fast, then I hold my breath for 5 counts and then breathe back out while counting to five, then don't inhale for 5 counts and then start all over. My physical therapist notice that I was breathing with my neck and chest muscles and has been working with me to make sure I am breathing basically with my belly.

I know this sounds crazy but it has helped me. I don't know if it would help you or not but hey-it doesn't involve medication so that's a real GOOD thing!! Oh and I don't get lightheaded when I do this even though I thought I would.

I also have "spells" where I feel like my air is cut off or that someone is choking me. I can take deep breaths during these spells but they are still scary. I'm hoping when I see the neurologist on Tuesday that he can give me an idea of what is happening when these spells hit. I will let you know if I find out anything interesting.

Hang in there and remember to "Just breathe". ( That's what Faith Hill says anyway. But I know it's easier said than done. I'm struggling today myself.)

Babette

[all4family]

Hi Babette,

Thank you for sharing that. I have tried different breathing "exercises", that I was given when I first started having breathing trouble. I found they made me think of how I was breathing too much because I was always thinking of it. But I really didn't have very good help with that, I was just given a piece of paper, and told to just relax. But I did find this most interesting site, that I am really interested in. It gives you a free onine breathing test, and they say you can improve your breathing. I am really kind of interested in it, because like you said I really don't want to take medication, and they tried me on an inhailer, and it didn't improve anything for the pulmonary function test. http://www.breathing.com/articles/shortness-of-breath.htm

It doesn't sound crazy at all. It sounds like just what I would like to do. I will give what you said a try today, before I start feeling short of breath. Thank you.

I hope things go well with your neurologist on Tuesday, and please do let me know what he says.

I love that song. Now I have to go buy another cd! I think I may already have it though. I am so sorry that you are having a hard time today also. I am starting to wonder if weather plays a role in some of all this stuff we experience. I noticed that there were a lot of people who were having "good spells" right around the same time as me, then they started hititing bottom around the same time also. Then I posted on the post about migrains, and they were saying that they are caused by vein constriction. Well I had just been on a site that ties barometric pressure with vein constiction, and thought well that would affect anyone with POTS! Just a thought. I really hope you have a better day, If you need somone to talk to please feel free to PM me.

Suzy

[vemee]

Thanks for the info on beta blockers. I just got back from my doctor when I read your post. I'll have to bring it up to him on my next follow up.

[all4family]

Hi Vemee,

No problem. I hope it helps you.

Suzy

[ashleighheath]

Suzy,

Thought I'd throw out my experience to you in hope that in might help you or someone in the POTS community.

After being "best guessed" and treated by my (ex) GP for seasonal asthma with an albuterol inhaler (which is bad for POTS) last year, I went to see an allergy/asthma specialist that quickly found that I had neither allergies nor asthma. The 1st pulmonary test indicated that I had an inspiratory problem but no expiratory issues (which would be indicative of asthma). He personally administered a 2nd pulmonary function test, and was able to coach me through a more suitable inspiratory cycle. He surmised that I most likely had VOCAL CHORD DYSFUNCTION and referred me to a specialist.

Because respiratory issues are frequently attributed to POTS, but the reasons(s) are not necessarily explained, I had been wondering if my breathing problems could be chalked up to the POTS and it seems like they can be indirectly. The allergy/asthma doctor had never treated anyone with ANS dysfunction but he immediately seemed to narrow down some good theories. Number one: our systems are "twitchy" which matches with the VCD phenomenon. Secondy he asked if I had reflux. Which I do/did. And I had been ignoring and not treating b/c I thought it was more of a nuisance than anything. Well, reflux exacerbates VCD.

After seeing the Otolaryngologist (ENT) and he confirmed the VCD diagnosis, as well as provided me with a NON-ALLERGIC RHINITIS diagnosis, and he provided breathing therapies (similar to Babette's), daily sinus rinse (for the rhinitis) and referred me to a GI to treat the reflux. He said normally he would treat the reflux, too, but because of my ANS dysfunction he wanted me to see a GI.

As we all know, there are many "motility" issues with POTS, including reflux. So in a back-handed sort of way my breathing problems were the fault of the POTS. Remarks in the postings regarding breathing difficulty at night (which I can relate to) would make sense if reflux is involved b/c it tends to be worse at night.

I hope that you get some relief and some answers. If you have any questions regarding VCD, please post back.

[potsgirl]

Hi Suzy,

Sorry I can't offer anything new, but just wanted to let you know that I'm thinking of you, and hoping this stage passes quickly. Please feel better soon, and let us know what you find out...

Best,

Jana

[janiedelite]

Hi Suzy,

I've been following this topic since you started it, but for the past two days have had an exacerbation with this breathing symptom (especially while laying down). My abdominal pain and nausea has worsened also. My BP and pulse are actually more normal than usual, but I can't sleep much because my chest feels so heavy I keep having panicky feelings. This has happened before, last summer. It lasted for weeks. Maybe it's just a warm weather thing? Or maybe since my hubby's a teacher and is home for the summer I'm doing too much? Talking really is making this worse too. I've resorted to a kind of made-up sign language ! Even my dogs respond to hand signals now!

Anyway, I hope at least you're getting some relief. I remember you mentioning your oxygen sats have dropped at times, especially when you're upright. Mine don't thank goodness. Do you feel this shortness of breath more so when you're upright or lying down? I wish I could lie down and make this symptom go away, but it just gets worse. I'm taking my reflux meds and hoping this will go away.

Janie

[all4family]

Hi RaleighPOTS, thanks so much for sharing that. It is so helpful to hear what other people experience on here, and what they find out. I am actually interested to know about the vocal cord dysfunction. I lose my voice quite frequently, although I haven't in a couple of months. When I had a DR. listening to different pitches of my voice I could not do some of them. And when I talk I always feel like I have to yell just to have a little voice. I get short of breath almost every time I talk. As a matter of fact if I didn't talk I probably would hardly ever faint. Thank you for sharing, and I am glad you found some answers.

Hi Jana, thank you for being there. The support means so much to me. How are you doing? Take care.

Hi Janie, I am so sorry to hearyou have been experiencing this yourself. It seems you and I have our fair share of these issues with breathing and talking. I have been experiencing the heavy chest, especially at night, and wake several times at night. It is an awful chest pain. It feels like a tooth ache all the way from my waist up. I get it during the day also, but Like you at night it is worse. I get panicky feelings with it too. (although I imagine it is hard not to feel panicky when you feel like your chest is smothering.) I know when my husband is home more then usual I have a lot more stress. Just because it takes you out of your normal routine. I love that your dogs respond to the sign language that you created. Dogs are so much more in tune to us I think. I do feel more short of breath when I am up, but when I am sleeping I have the bad chest pain. I did learn something interesting though last night. I have had a side to side whiplash type injury just before I became sick, and I have a lot of trouble with my neck. Yesterday afternooon I cracked my neck, and afterwords the breathing eased up, and last night I didn't have any chest pain! So I looked up some information on chest pain with neck pain, and side to side whiplash, and I found this most interesting article. http://www.jrheum.com/subscribers/05/12/2288.html I know you have had a car accident if I am not mistaken? Did you get whiplash from it? If you get a chance to read it let me know what you think. I do hope you get feeling better from this real soon also. I know that for me sometimes, even though I am on my laptop I cannot hold my head up long enough to type. Take care, and feel better.

Suzy

[janiedelite]

Hi Suzy,

Thank you so much for the information!!! Yes, the article focused a lot on TMJ disorder and the first accident knocked the disc out of the right side of my TMJ because of front to back whiplash. The last accident produced a lot of neck pain from side-to-side whiplash. My first tachy episode was a month after the last accident... hmmm> I told the mayo neurologist about this but he thought having mono a few months earlier was the more likely culprit.

I'm so sick of this chest pain. I went to a chiropractor last year a few times but had bad migraines a couple days afterward. I might try one more time this afternoon. I'll let you know how it goes. I usually feel pretty good for the hour right after the adjustment. I'm just so incapacitated today and my ANS feels so jumpy. I might make myself worse, but I think it's worth a shot.

Thanks for the encouragement, janie

[all4family]

Hi Janie,

I'm glad you found the article useful. I think that is interesting, because one of the few things that they found wrong with me was I have a pinched nerve in my neck. I mentioned the side to side whiplash, and asked if this could cause the pain in my chest, and everyone I asked said no. But it really makes some sense to me. I mean all our brain signals go through our neck, so if there is a problem there, even if it is not a visible one it can cause all sorts of trouble. I really hope the chiropractic appointment helps you. I went to one, but it got too expensive, and the last one I had gave me a really bad migrain also. I will pray that it will help you, and really pray that it won't make things worse. This is case studies on people with whiplash, that have gone to a specific doctor. It is an advertisement for the doctor I am sure, but the stories are worth the read I think. http://www.erinelster.com/CaseStudies.aspx?ConditionID=26

I really hope you get to feeling better. It is so miserable not to be able to get away from pain. Please let me know if the chiropracter helps. I might try going back too!

Suzy

[janiedelite]

Yeah, I have a nodule on the Left side of my C-6 vertebrae (it's not cancer, just the lining of my spinal cord pouched out). But I've had neck pain since my first car accident 10 years ago and chiropractic used to really help. I even worked in the chiropractor's office during nursing school for free adjustments. The last few years have found it less helpful and even hurtful. I've used PT instead, but I haven't been to her for my back problems for a couple months. I have a number for a massage therapist who does myofacial work. If the chiropractor doesn't help much, I think I'll see the masseusse.

Take care, Janie

[all4family]

I am almost certain it is my c-6 that has the pinched nerve in it. I will have to look it up in my medical records. That is interesting. I also remember the day after I had the whiplash injury I took a long car ride with my husband, and I kept comenting on how weird I felt. Nothing felt right, and my vision was dark too. I will have to look up myofacial work. Thanks for telling me about that. Good luck today, and I hope you get some relief.

feel better,

Suzy

[ajw4790]

Those who have breathing difficulties while lying down, sleeping etc. Have you been checked for sleep apnea? Even if you have no signs or don't fit the typical apnea profile. Some of what I read in posts sounds a lot like apnea or related issues. You may want to talk with a sleep specialist.

Also, did you look into asthma?

[janiedelite]

Hi ajw, I did a sleep study and was told I have no apnea. Also, I never have had any wheezing. Good thinking, though!

Hi Suzy, Don't waste your time at the chiropractor. My chest feels just as heavy as when I left, my back feels better in some places but worse in others. And I have a headache now. I wish it would have helped. My chiropractor is really nice and helps my hubby a lot with his back pain. Oh well!

[all4family]

Oh Janie, I am so sorry it made you feel worse. The last thing you need is a headache. I remember that is one of the reasons I quit going. That and the money. When my neck cracked yesterday it was because it was really stiff, and I pushed on the side of my chin just a bit, and it cracked, and gave me a huge amount of relief. But now tonight I am getting the chest pain back. I am hoping it is just temporary, and maybe it is just healing. I feel so bad for you, and wish I could do something to help. It is such a sad illness, it makes us willing to try anything, sometimes even more then once just in hopes of feeling better. I hope your headache goes away quickly. (and your chest heavyness.) Please let me know how you are doing if you can. Take care. (((((HUG)))))

AJW, I do have sleep apnea, but it is mild, and the breathing improves for me when I lay down. I also have had 2 pulmonary function tests, and neither doctor said I have asthma. I am sure there are some others who should have these things checked here, so thank you for mentioning it. Take care.

Suzy