Anyone Take Medication That Helps With Breathing?

[abnel]

Summer has arrived here with a vengeance and I am really struggling to cope with the heat and humidity. Worst of all is my breathing which has deteriorated rapidly. Normally I do short walk every day outdoors but now I can't even manage leaving the house without having major breathing difficulties. Inevitably anxiety kicks in, making the whole episode even worse. I am taking huge lung fulls of breath but it feels like I am not getting enough oxygen. During these episodes I don't feel I can shallow breathe at all. Breathing is a real struggle.

Two doctors I have seen have ruled out asthma and seasonal allergies. One of them has talked about beta blockers.

I have read on previous posts that some of you have found beta blockers have helped with breathing. But does this only work because you have tachycardia at the same time?

My breathing difficulties start at around 10am every morning and last until 3/4pm. I usually have tachycardia from noon and this lasts until 2pm. So I'm just not sure that beta blockers will work if tachycardia is not associated with the breathing difficulties.

I haven't started any drug treatment yet except for salt, as I was only diagnosed with POTS 3 months ago after being symptomatic for over 12 months.

Any ideas you have regarding medication would be greatly appreciated.

Thanking you in advance.

[dianne.fraser]

Hi. I have breathing difficulties when my illness is more active. The sicker I get, the more strained my breathing feels generally, as though I'm trying to suck oxygen out of a really thick fog - I just don't feel as though I'm getting enough air. During exacerbations of my illness I sometimes also get breathing difficulties at night, when my body seems to forget to breathe

Two medications have helped in the past. First, I was treated with steroids when my immunologist was trying to settle inflammation from an underlying mystery disease (presenting as the anaemia of chronic disease) - I was prescribed predmix (usually given to children, I think) and on my second dose it felt as though my lungs expanded properly for the first time in my life - my breathing felt effortless. It was wonderful.

The other medication thats helped is a small dose of Lexapro - I can't take it for very long, but it really eases my breathing and, during a time when I was very sick, it seemed to completely stop my night-time respiratory problems.

Finally, I rest for a month during mid-summer and mid-winter - my body struggles the most when the weather is very hot and very cold. I don't fight it any more; as soon as I realise I'm going downhill, I focus on doing the things that soothe my illness - rest, regular fluids, gentle bodywork, low carb diet, active measures to stay cool when the weather is hot, active measures to stay warm when the weather is cold, avoiding anything that aggravates my illness (eg flying; overwork), treating symptoms (like nausea and muscle soreness) etc etc etc.

Good luck - I hope you're feeling better soon.

Dianne

[Nela]

I cannot really give you a good answer because I do have quite severe asthma so it's really hard for me to know what causes the breathing issues. I definitely cannot handle heat well though. I'm currently on Spiriva, cortisone, singulair, Salbutamol, Avamys, etc. I do use a beta-blocker as well.

[Sarah4444]

The MCAD meds have been helping me breathe better: Reactine/Zyrtec, Zantac, Gastrocrom/Nalcron and 20 mg doxepin at night. I still have most of the other symptoms and problems but at least I can usually breathe better - I hope it's not just because summer has left and it's full blown winter here!

[juliegee]

Summer has arrived here with a vengeance and I am really struggling to cope with the heat and humidity. Worst of all is my breathing which has deteriorated rapidly. Normally I do short walk every day outdoors but now I can't even manage leaving the house without having major breathing difficulties. Inevitably anxiety kicks in, making the whole episode even worse. I am taking huge lung fulls of breath but it feels like I am not getting enough oxygen. During these episodes I don't feel I can shallow breathe at all. Breathing is a real struggle.

Two doctors I have seen have ruled out asthma and seasonal allergies. One of them has talked about beta blockers.

I have read on previous posts that some of you have found beta blockers have helped with breathing. But does this only work because you have tachycardia at the same time?

My breathing difficulties start at around 10am every morning and last until 3/4pm. I usually have tachycardia from noon and this lasts until 2pm. So I'm just not sure that beta blockers will work if tachycardia is not associated with the breathing difficulties.

I haven't started any drug treatment yet except for salt, as I was only diagnosed with POTS 3 months ago after being symptomatic for over 12 months.

Any ideas you have regarding medication would be greatly appreciated.

Thanking you in advance.

Welcome Lotusflower-

Sorry you are dealing with this . I have a few thoughts and questions. Have you ever used an oxygen pulsometer when you were having breathing difficulties? It's a little machine that you clip on your finger that conclusively illustrates your oxygenation. It would be good to see if you simply "felt" you weren't getting enough oxygen or if your oxygenation was really impaired. Don't know if it's possible to rent or borrow one of those machines, but it would be helpful in determining what exactly is going on.

HOW have your docs ruled out allergies and asthma? I also have neither & yet have trouble breathing. My docs did scratch & RAST allergy testing and I was allergic to NOTHING- even things I react to. I also had a spirometry test at a time that my breathing was impaired. It indicated my breathing was "obstructed", yet it did not reverse with albuterol or xopenex. That's how my docs ruled out the traditional IgE mediated stuff. Just wondered HOW your docs did. It's important info in the diagnostic phase of things.

My breathing problems are not necessarily associated with increased tachy. I pretty much have that anytime I'm upright, but when I have problems with breathing, it stays with me whether I am sitting or standing. My breathing problems may be different as I experience actual pain/pressure upon breathing in when I'm symptomatic, although I've also had the air hunger & subsequent panic that you describe. For me that's a form of "mini-anaphylaxis". Like Sarah, I've gotten great help from the Mast Cell Activation Disorder/MCAD meds in preventing these attacks. BUT 2 meds help specifically with the breathing issues- singulair (I take this daily) and Advair via a nebulizer (I only use this when it's bad.)

I would be cautious about using a beta blocker just in case you do have MCAD. They are contraindicated for those with allergies/asthma or those who exhibit their symptoms- that's YOU. Here's a link you may want to peruse to see if a mast cell disorder fits your symptoms: http://www.tmsforacure.org/mastocytosis.shtml

I hope you find relief. Keep posting, researching, and asking question.

Hugs-

Julie

[abnel]

Hi Mack's Mom, no I have never used an oxygen pulsometer but I will mention it when I see my specialist this afternoon.

Two doctors I have seen have ruled out the asthma and allergies by doing a simple examination of my chest and back, listening to my heart and lungs using a stethoscope. One of them said that if it was asthma the breathing would be worse at night and in the morning. I didn't feel that this was a particularly persuasive argument, but not having any medical background I really didn't know what other testing to ask for.

I don't actually know what kind of POTS I have. My specialist didn't mention it and I didn't know what to ask when I was first diagnosed. I will be seeing her this afternoon for the first time since I was diagnosed and hope to get some more information regarding diagnosis, treatment, etc.

On the topic of MCAD, do any of you ever feel like you have magnets pulling at the back of your head or your body in different directions and all at once? I don't have this all the time but I do have this periodically during the day. On my very bad days it feels like there are magnets pulling at me all day long in different directions. It's worse if I stay in one position for too long.

Thanks so much for your suggestions and also thanks to Sarah, Nela and Dianne for sharing your experiences. It helps so much to know that I am not alone in this.

[juliegee]

I don't think that body-pulling feeling is related to MCAD, but maybe dysautonomia... I think we've talked about it here before. I had one memorable day when I was pulled left really hard- bizarre. I chose to shop in the Mall that day As I tried clothing on, I kept smiling in the mirror to see if both sides of my mouth lifted. I thought I was having a stroke. Good to know I'm not alone, but I hate that that is a regular occurrence for you. Maybe start a new topic about that & see if anyone else has had a similar experience.

Keep us posted on what you learn.

Julie

[sj75]

beta blockers have definitely helped me with this. My o2 sats when walking around can drop to the low 80's and its useful to have the o2 sats finger monitor to see whats actually going on.

We dont have lexapro in the uk, can anyone tell me what it is??

[dianne.fraser]

Sj - Lexapro is an SSRI. I have to cut it in four and take it with half a zantac, and I can't take it two days running, but it eases my breathing problems at night when they occur and gives me confidence that I'm not going to suffocate in my sleep during big exacerbations.

I tried a couple of beta blockers, but failed to tolerate them - one gave me every possible side-effect; they both seemed to amplify the effects of my illness if I did anything to aggravate it eg standing too long or flying.

Dianne

[sj75]

thanks Dianne, i have been prescrined citalopram a number of times but am waiting til i see the allergy specialist in a couple of weeks to ask his advice as i seem to react to most medications that i take which puts me off talking them.

What happens if you dont take with zantac or take a few days in a row?

[dianne.fraser]

SJ

The Lexapro gave me stomach soreness almost immediately (eased by the zantac); tinnitis and chronic insomnia followed after a week or so, then I became hyperalert and a little manic. I've tried it a couple of times - same result, even when I take a miniscule amount and don't take it every day.

A lot of us have poor tolerance to medications - me too. I just accept it now, and I use self-management approaches to keep my health on an even keel. As long as I tread carefully, avoiding anything that aggravates my illness and doing things that soothe it, I'm more functional and less fatigued now than I have been for many years. I used to dream of finding a pill that would fix it all for me; now I accept that, for me, there probably isn't one.

Good luck with the allergy specialist - let us know how you go.

Dianne

[juliegee]

SJ

The Lexapro gave me stomach soreness almost immediately (eased by the zantac); tinnitis and chronic insomnia followed after a week or so, then I became hyperalert and a little manic. I've tried it a couple of times - same result, even when I take a miniscule amount and don't take it every day.

A lot of us have poor tolerance to medications - me too. I just accept it now, and I use self-management approaches to keep my health on an even keel. As long as I tread carefully, avoiding anything that aggravates my illness and doing things that soothe it, I'm more functional and less fatigued now than I have been for many years. I used to dream of finding a pill that would fix it all for me; now I accept that, for me, there probably isn't one.

Good luck with the allergy specialist - let us know how you go.

Dianne

Dianne-

I find your reaction to Lexapro interesting. My son had the same hypersomnia issues- although most become drowsy with SSRI's. I think he failed to sleep for a week before I realized what was happening. He has been able to stay on it (after titrating up very, very, very slowly), but switched from taking it at night to taking it in the daytime. You see, one of his main issues is chronic debilitating fatigue. When his doc learned of Mack's reaction- he said "let's harness that to our advantage." Just a thought

Julie

[dianne.fraser]

Hi Julie. The first time I tried Lexapro I persisted with it for around 6 weeks (taking it first thing in the morning) - one of my workmates was a former drug rep for Lexapro, and she said the insomnia was a common side-effect that generally subsided after a month and a half. It didn't subside for me, and I didn't want to take additional medication to address it (eg a sedative that might have impacted on my respiratory system). I also couldn't live with the tinnitis. On the whole, although it relieved my breathing difficulties during a crisis, it made life a lot harder on a daily basis, and it was particularly difficult to keep working while trying to cope with the side-effects.

I consulted with the drug company, only to be told that given there had been no clinical trials of Lexapro with dysautonomia patients they were unable to provide advice on the expected side-effects, benefits or optimal dosage.

Right now, I'm able to use self-management approaches to keep my health in balance - no drugs at all - but I would take Lexapro again in the short-term to address breathing difficulties in a crisis. Basically, the better I manage my illness, the more likely my symptoms are to sleep. At present, even my fatigue is sleeping - I'm the most alert I've ever been in my life since cutting back my carbs fairly dramatically in August. I become fatigued really quickly if I don't get enough rest, or stop my basic dysautonomia management (or eat too many carbs at one sitting), but overall I'm doing well.

With best wishes

Dianne

[hilbiligrl]

Some of my biggest complaints of my 'attacks' have always been severe catastrophic weakness, hard time breathing, as if my lungs wont fully expand and as if my diaphram is just give out, like my muscles are too weak or too paralyzed to work.... I usally resort to panting and labored breathing.... i hate that feeling. Even combivent doesn't help. But, thanks girls for the input, because now I can suggest a few things at my next doc appt.

hilbiligrl

[abnel]

Hi Julie,

Thanks for sharing your experience regarding the mall! It's amazing the stuff that goes on inside of us - while we are looking perfectly normally we are feeling anything but!

Regarding my appointment: my doctor thought my breathing difficulties are caused by tachycardia and so gave me a very low does of valium to slow my heart rate down. I felt awful on taking it. My resting heart rate is normally around 85 BPM but it went down to around 75 BPM. This also had the consequential effect of lowering my blood pressure which I only finally managed to increase after going on salt tablets (it went from from 60/90 normally to around 75/115 on salt tablets and back down again after the valium). So stopped taking the valium straight away and started taking an asthma preventer. My breathing has been a bit better in the last few days but I am not sure if this is because of the preventer or the fact it has become a bit cooer and drier in the past few days. I will find out no doubt once it heats up again!