Dysautonomia Breathing Related Issues And Treatments

[RichGotsPots]

Hi Everyone, I thought it was about time we get poll everyone to see what type of breathing issues we all have that are related and what the best treatments have been. Sorry if I missed some questions.

I'm also going to post a link to a new pool for what treatments made our breathing worse for us.

Hope this benefits everyone, please keep in mind this poll is for Dysautonomia breathing problems exclusively and not for asthma, allergy, or any other non-related breathing issue. But if you feel mast cell issues, VCD, Chronic fatigue issues or any other issues are related to Dysautonomia then by all means you are included in the this poll

Rich

[Dizzysillyak]

Wow .. Looks like you covered everything. Great job. I would just add laying down as a treatment

that works. It's my only successful treatment. I can't breath properly unless I do this. And I'd split going up stairs into a separate trigger.

I can walk easily if I'm rested but I can't do stairs.

Fwiw. I think it's interesting that they've found that we might have weak thoraxes and going upstairs nails many of us.

I wonder if there's a connection.

Also, I couldn't walk for 16 1/2 years and it turned out to be ataxia which is a problem in the cerebellum.

I was surprised to find that my arms and legs weren't heavy anymore. Not falling over anymore I understood. So at least part of my brain damage has been reversed.

Tc .. D

[RichGotsPots]

the purpose of my post is so that people who have the same breathing issues can exchange helpful treatment. Likewise I will make a post for worsening treatments

[bellgirl]

This was so thorough...I'm impressed!! Thanks Rich...When I have a problem with breathing, I do take special effort to concentrate on the way I am breathing, so I get better perfussion, slow deep breathing through my nose and out my mouth (that is how our bodies are designed to breathe). There are a lot of times when I am not conscious, that I am either holding my breath, not sitting properly to get the best lung expansion and perfussion, possibly worrying over something, that I could just pray about, and remedy by releasing some stress related issue that happens to everyone; it just affects us with breathing problems more than someone who doesn't have them. Climbing stairs is very taxing for me, too. I also have Mitral Valve Prolapse, so I am sure this doesn't help matters, along with yoyoing heart rate, blood pressure lately has been somewhat constant, due to B/P medication, though, which I am grateful!! I know that my Cpap has helped me sleep so much better, because of my sleep apnea, along with the small dose of clonazepam at night. Any eating causes blood pooling for me, so I have more trouble breathing after I eat; it doesn't matter what I eat. I can eat better in the evening, because of my nausea in the morning, so that's when I try to eat the most. Small meals during the day...drinking fluids is better in the afternoon, although I force myself in the morning, as well. I can't drink anything too cold, ice in a drink is horrible for me. It makes my heart ache! This has nothing to do with an achy breaky heart...lol I used to scoop out the ice in a restaurant, and then it dawned on me to start asking for NO ice. My son tells me I would be very comfortable with the drinks in Europe...they are room temperature

[Monstrosity]

Nice work! I didnt click a treatment but resting/laying down helps. Also Singulair helps some.

[Sif]

I'm pretty sure mine is related to tachycardia or whatever is causing the tachy. Beta blockers cut it right down. I tried out some Salbutamol during a lung test but it really aggravated my POTS symptoms and just made my breathing worse, lol.

[abnel]

I voted but wanted to add that my breathing is worst of all during meals. I often feel like I can't take a proper breath while eating. Sometimes it's the food I'm eating, other times it's just my lungs don't seem to want to co-operate while I have food in my mouth. I have to force myself to keep breathing through it all. Warm and/or humid air or very cold air is not good for my lungs. My breathing problems do not directly correlate with how severe my POTS/orthostatic intolerance is. I can be having a great day POTS-wise and can stand for longer periods with no racing heart and do some decent exercise, but have terrible breathing issues whether I'm sitting or standing. Makes me wonder how much of it is really related to Orthostatic Intolerance.

[Elfie]

I usually deal with shortness of breath or chest pressure and pain (for me they tend to be related) in the evenings and at night and it makes it difficult to lay down or sleep. I also have it when I'm on my feet to much or when my heart rate drops when I've been standing (like I'm moving around, I pause to catch my breath and the shortness of breath gets worse). Sometimes eating will trigger it, but not one food. Heat can be stifling and trigger it.

[RichGotsPots]

Nice work! I didnt click a treatment but resting/laying down helps. Also Singulair helps some.

I would include singulair in the allergy treatments

[RichGotsPots]

I'm going to start working on the other poll for treatments that have had bad effects. I'll also tally up a good list after we get to 30 responses...

[RichGotsPots]

here is the Poll for what medicines make breathing worse http://forums.dinet.org/index.php?/topic/20096-part-2-dysautonomia-breathing-related-issues-and-treatments/

[rubytuesday]

I just wanted to add with my orthostatic hypotension, it is not the sensation of my heart racing (as it did with my POTS) but with both POTS and OH I get bounding palpitations.

[RichGotsPots]

Great a few responses and I'll organize the results some

[fc3schick87]

in 2010 i was having issues feeling confused and out of breath , for about 8 months i had this issue i couldnt complete a train of thought when it got bad. i kept forgetting what i was doing, what i was thinking about... it got bad.

i did a stress test but nothing really showed up. they even took pictures and video of my heart. nothing showed anything.

in september of 2010 i got sharp pains in my chest. my friend offered me xanex , she thought i was having a panic attack. i took 0.50 mg and i felt better.. the next day i had lunch with my mom and i told her what had happen. she offered me her inhailer. it also helped...

i went to the dr and he perscribed 0.25 mg of xanex ( i take half of it) and a rescue inhailer. i havent had any issues like that since. i also take singular but it makes me extremely moody and irritated and i even have thoughts of suicide (such panic i want to crash my car? ya im not taking singular any more lol) which helpd but i just dont want to risk taking it.

so yeah..... but the only down side is the inhailer makes my heart race if i am not hydrated.... but it works good when i need it too

[RichGotsPots]

Everyones answers we on the money compared to mine. The best treatments for are h2o and cooling down. And my biggest triggers are also #1 & 2 walking up stairs and standing too long... We really need to get to the bottom of fixing this..

[issie]

Rich,

I tried to PM this to you, but your box is full again. Some of us are talking about mast cell issues and it has been discovered that there could be high PGD2 levels that mast cells release. The doctors are having us try aspirin therapy for lowering those levels. In doing some research on this - it can also be a factor in asthma and breathing issues. Just thought you might want to look into this idea as a possible issue with you and your breathing issues.

Issie

[Relax86]

I returned to a 5mg hydrocortisone this weekend due to breathing issues... it worked immediately. Stairs are terrible for me even when all other symptoms are quiet. I attempted to get off the hydro about 3 weeks ago feeling strong enough to try and be independently med free. My symptoms all slowly returned. I responded so quickly to getting back on the med that it makes me wonder if I really am POTS/Dysautonomia or something else. Although I realize this thing is an individual game I don't see anyone else on the forum using hydrocortisone regularly or saying this med was their savior. I'm just coming off of a week without breathing well so this Poll interested me.

[RichGotsPots]

Rich,

I tried to PM this to you, but your box is full again. Some of us are talking about mast cell issues and it has been discovered that there could be high PGD2 levels that mast cells release. The doctors are having us try aspirin therapy for lowering those levels. In doing some research on this - it can also be a factor in asthma and breathing issues. Also, one thing of intrerest to me is they are discovering that people losing their hair this could possibly be due to high PGD2 levels. Since I have autoimmune issues causing hair loss and pigment loss - wondering if this could be a connection with me - since I have a probable MCAS diagnosis. Just thought you might want to look into this idea as a possible issue with you and your breathing issues.

Issie

Issie, as you can see on 4 out of 36 pool takers said allergy meds helped with their breathing. So while it may be an issue for some it doesnt appear to be for many. I think many people on here try allergy/mcas meds because it mentioned so often on this forum but I dont see any proof of it being wildly effective for people on here with breathing issues. That said I personally have experimented with taking these meds and it didnt harm me to try but didnt help at all.. Asthma can be triggered by allergies or MCAS that is why I was given singulair when my pulm thought I had asthma. Again that med didnt help at all..

[issie]

Rich,

PGD2 has to do with inflammation and what the allergist are trying is aspirin therapy for those with mast cell issues. I know a lot of asthmatics are not supposed to take aspirin and haven't really done a good check to see what other supplements might lower this protein. But, just wondering if some sort of inflammation type thing could be contribiuting to your breathing issues. I knew you said that you didn't think the allergy meds were of benefit to you. But, trying something for inflammation might be another direction. Didn't know if you'd look at this angle before, or not.

Issie

[RichGotsPots]

I returned to a 5mg hydrocortisone this weekend due to breathing issues... it worked immediately. Stairs are terrible for me even when all other symptoms are quiet. I attempted to get off the hydro about 3 weeks ago feeling strong enough to try and be independently med free. My symptoms all slowly returned. I responded so quickly to getting back on the med that it makes me wonder if I really am POTS/Dysautonomia or something else. Although I realize this thing is an individual game I don't see anyone else on the forum using hydrocortisone regularly or saying this med was their savior. I'm just coming off of a week without breathing well so this Poll interested me.

I think that is very interesting. Did they check you for pheochromocytoma and adrenal insufficiency? When my breathing was first very bad thye gave me prednisone which is 4x stronger than hydrocortisone and it helped but only about 10% and then it took me 4 months to get off of it. When I would try my breathing would also get worse. Because the synthetic steriod acts as cortisol so the body stops making its own and the adrenal gland shrinks. I've been off prednisone for over 2 months but havent improved or gotten worse. While I ruled out pheochromocytoma I now need to get my AM cortisol tested as well as a full endo work out.. I dont rule out cortisol issues completely. But I dont think they are what is affecting my heart or breathing though..

[tachyfor50years]

My biggest triggers are:

1) Carying heavy objects starting from 5 Pounds! even on a flat floor and for a short time (like for 1 minute or so).

2) Lifing up my arms, like when I try to reach over.

3) Bending down or over.

4) During conflicts or problems (At work and at home).

[Relax86]

Rich ~ I have not been tested for pheochromocytoma. I was diagnosed with adrenal fatigue with just a conversation about symptoms by a women's health Doc that mixes some Eastern thought with traditional medicine. She originally prescribed me the Hydro. I was fine on 5mg 2x per day. I sought an endo who went ballistic that I was on it. He asked me to get off for 2 weeks then I had the test which ruled out Addisons. He told me he also found low aldosterone and renin but believed I skewed my own results....because of course I was just looking to be sick (insert sarcasm font). He told me that I didn't need an endo which was fine with me as he wouldn't have been my choice. He severely cautioned me about the use of the hydrocortisone; also saying that adrenal fatigue is an internet disease. I took his words about the misuse of hydrocortisone seriously and therefore attempted to d/c use. Within 3 weeks all my symptoms were returning and it was like I could do nothing about it. I'm day 4 on it and I feel nearly 90%. Which makes me not 100% sure I'm POTS but my symptoms are just so close to many people here. As far as adrenal insufficiency he seemed to believe the testing was black or white....Addisons or healthy. I have had an MRI with dye which was clear. I just wasn't it a good hospital and always wonder if something was missed. Using the cortisone alleviated my R inner ear pain and R neck spasms as well. I have this image of a small harmless mass on a nerve that's impacting me in a big way. I just feel crazy I guess. I believe that I'll get better but only due to this forum. So thanks for your thoughts and research.

[RichGotsPots]

Rich,

PGD2 has to do with inflammation and what the allergist are trying is aspirin therapy for those with mast cell issues. I know a lot of asthmatics are not supposed to take aspirin and haven't really done a good check to see what other supplements might lower this protein. But, just wondering if some sort of inflammation type thing could be contribiuting to your breathing issues. I knew you said that you didn't think the allergy meds were of benefit to you. But, trying something for inflammation might be another direction. Didn't know if you'd look at this angle before, or not.

Issie

what kind of asprin doses? i cant handle asprin ever since i 1st got pots

[issie]

Aspirin may not work for you then. But, I did a search for alternative things to lower PGD2 and posted it on another thread today - under "Follow-up with Dr. Afrin". I have about decided that the aspirin isn't the best for me either - but, some of these other things are helping - done something different for two days now and feeling better.

Issie

[RichGotsPots]

Rich ~ I have not been tested for pheochromocytoma. I was diagnosed with adrenal fatigue with just a conversation about symptoms by a women's health Doc that mixes some Eastern thought with traditional medicine. She originally prescribed me the Hydro. I was fine on 5mg 2x per day. I sought an endo who went ballistic that I was on it. He asked me to get off for 2 weeks then I had the test which ruled out Addisons. He told me he also found low aldosterone and renin but believed I skewed my own results....because of course I was just looking to be sick (insert sarcasm font). He told me that I didn't need an endo which was fine with me as he wouldn't have been my choice. He severely cautioned me about the use of the hydrocortisone; also saying that adrenal fatigue is an internet disease. I took his words about the misuse of hydrocortisone seriously and therefore attempted to d/c use. Within 3 weeks all my symptoms were returning and it was like I could do nothing about it. I'm day 4 on it and I feel nearly 90%. Which makes me not 100% sure I'm POTS but my symptoms are just so close to many people here. As far as adrenal insufficiency he seemed to believe the testing was black or white....Addisons or healthy. I have had an MRI with dye which was clear. I just wasn't it a good hospital and always wonder if something was missed. Using the cortisone alleviated my R inner ear pain and R neck spasms as well. I have this image of a small harmless mass on a nerve that's impacting me in a big way. I just feel crazy I guess. I believe that I'll get better but only due to this forum. So thanks for your thoughts and research.

my pots doc did a 24 hour urine test to rule out pheo.. Adrenal fatigue means something different to alternative docs... not sure about hydroc but predisone is given for autoimmune issues, so it weakens the immune system over-attacking the body. I have heard of some autoimmune issues causing dysautonomia thats why i stayed on prednisone so long, but in the long run it didnt help me..

Wikisays:

Anything that can damage the autonomic nervous system can potentially cause POTS. There are hundreds of things that can cause autonomic nerve damage, for example:

• physical traumas to autonomic nerves (car accidents, falls, head/spinal injuries during sports)
  
• toxic drug and chemical exposures (organophosphate pesticide poisoning, some chemotherapy drugs, thallium, pyroxidine, etc.)
  
• vitamin deficiencies (B12 is the most common vitamin deficiency associated with autonomic neuropathy)
  
• infectious or acute diseases, such as HIV, Diptheria, Chagas Disease, Lyme Disease, and Guillain Barre Syndrome
  
• chronic diseases, such as CIDP,^[13] Diabetes,^[14] Multiple Sclerosis,^[15] Sjogren's Syndrome,^[16] Lupus,^[17] Celiac Disease^[18] and other autoimmune diseases.
  
• inherited or genetic diseases (Familial Dysautonomia, Hereditary Sensory Autonomic Neuropathy)