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Looking for people with GERD and Asthma (where GERD is the bigger problem)

Hi everyone

I joined this group last year but haven't been very active. When I was first diagnosed in 2017, my symptoms were shortness of breath on exertion, but also my spirometry results were not good and also I felt/feel chest constriction most of the time.  I started out with a rescue inhaler but it didn't help so I stopped using it.  About a month after the asthma diagnosis I went through cardiology tests because I was having palpitations.  I wore a heart monitor for 2 days and noted when I was having them, but strangely, when the data was analyzed, palpitations were not occurring.  After months of weirdness I finally had an endoscopy and it shows I have GERD, but it's the atypical type where classic "heartburn" is not what's felt.

One year later after several changes in drug regimens, I still feel lousy and I am, of course, out of breath especially when I wake up.  Never scary, always uncomfortable.

I guess what I am looking for is advice? Other people having gone through/going through this kind of dual condition.  Or if you happen to live in Fairfield County, Connecticut and know a doctor who specializes in the intersection of these two diseases I would really like to know about it..

Just on a positive note: the silver lining, or rather the consolation prize, might be that I greatly improved my physically fitness while trying to overcome my diagnoses.

thanks for listening

LaurieG

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Comments 27

  • Melissa G

    Hi LaurieG!

    My youngest dd suffers from severe GERD. If her GERD gets out of control it definitely effects her asthma. When she was younger, previous drs were more worried about the asthma, it wasn't until we switched GI dr's did we get the GERD under control and then we were able to get the asthma under control. 

    When Bekah had her first endoscopy, her esophagus was a mess from damage. 

    What GERD symptoms do you have? What meds are you taking? Have you made any diet changes to help with the GERD?

  • K8sMom2002

    Laurie, that sounds plenty frustrating! Do you know if your spirometry results have improved? Did your peak flow improve after using your rescue inhaler?

    My doc talks a lot about tipping points when it comes to asthma, and GERD can be a trigger. 

    Really good that your physical fitness has improved – do you think it has moved the needle in a positive direction any at all?

  • Nancy Knight

    Laurie,  I also have GERD and asthma.  I have the type of GERD where I do not get classic heartburn, instead it affects my voice quality.  I took about 6 months of a food diary to determine which foods caused GERD and mostly eliminated them.  It really helped the GERD, and was worth the hassle.  I did not see a connection with asthma, but I have read that uncontrolled GERD can affect asthma.  Good luck with everything and hang in there!  It's easy to give up when you don't see results quickly.

     

    Nancy

  • K8sMom2002

    Nancy, I love how you used a food diary to help you track down the culprit! What foods were the main trigger for your GERD?

  • Deborah Bartlett

    I live in New Haven county CT, but lived in Fairfield county most of my life. If I come across such a specialist I will post such information. Good luck. ☺

  • LG2017

    Apologies for a late reply to all of you.  I was offline for a few days.  This group is a godsend and I want you all to know how grateful I am for your thoughtfulness! 

    To answer a couple of questions:

    Drugs: currently on 75mg of Zantac (generic) 2x day, just started also taking Carafete (generic, too) 2x a day.  These are alternating doses, with plenty of time built in around eating, and between the two drugs. (I was taking double doses of Nexium for a while but I had an allergic reaction.  After that I was taking 300mg of Zantac for a while but things improved enough for me to reduce that dosage.)

    Symptoms: Atypical GERD means I don't feel the burn.  However, I do feel nasty sensations that are very hard to describe, that spread from my sternum across my ribs and up into my throat.  I feel like there is a toxic wind inside my body.

    Re: Asthma.  I tested my lung capacity via spirometer before and after aerobic activity and also before and after using the rescue inhaler.  For about a month.  Results under 5% improvement w/inhaler.  Results after aerobic activity generally 15-20% improvement (but still not great numbers.)  Some days of course are worse than others; sense of breathing obstruction is worse when GERD symptoms are active.

    I changed my diet to eliminate the known suspects.  When I fall off the wagon (so to speak) I do notice, but eating as cleanly as I possibly can does not eliminate the symptoms.  Worst when I wake up. 

    A question about the food diary.  How long does it take for a food trigger to impact symptoms?  Is it just a few hours or might it be a few days?

    thanks again!

    LaurieG

  • K8sMom2002

    Ugh on the allergic reaction to the meds! I do hope you're feeling better from that.

    On the diary … you could begin to see some things at once, and then again, it could take a while for all your patterns to emerge. Could you ask your doctor when your diet changes should have had their maximum effect? That way you could give it a good try with no cheating for that period of time and see what impact that has.

  • LG2017

    That's a good idea (about conferring w/my doctor.)  As it happens, I have an appointment early next week with my gastro, and this is definitely on my list of questions.

    Laurie

    Re: allergic reaction.  I broke out in tiny little red dots! I didn't notice at first and then it got more pervasive.  On the one hand I was sad because I thought that drug was helping w/the symptoms, but on the other, long-term use of PPIs is not a good thing, so the reaction forced me to give them up.

     

  • K8sMom2002

    That's a good idea to have a list of questions for your doc, and I'm glad that you will be seeing the GI soon. 

    Bummer that the meds seemed to be helping you and then you developed a reaction. I'm hoping your doc may have some other options for you. 

    Are there any tests that your doc has planned? Or is this a regular visit?

  • Melissa G

    My dd takes carafate and prevacid. she was on zantac, but it wasn't working anymore. 

    Good luck at your appt next week, and let us know how it goes. 

  • Melissa G

    Laurie, have you ever heard of an esophageal spasm? What you described possibly sounds like one. My youngest gets them, they are horrid. 

  • LG2017

    @Melissa: Yikes! I just looked that up, and no, I don't get those. 

    I do feel as though the carafete might be helping a bit.  I just started it a week ago, and I upped my dosage of Zantac (now 75mg in the a.m. and 150mg before dinner.)

    But I always feel the toxicity of this condition in my lungs even more than feeling it in my esophagus. 

  • Melissa G

    I'm glad you don't get them. the first time my dd go them, we thought she was having a heart attack…so did the paramedics…

    Carafate can take a little while to start working. 

  • LG2017

    Hi everyone and Happy New Year.  I definitely should have posted back sooner.  Here is my update.  After my consultation with my gastro (back in October) there were some changes.  Briefly, she made me go back on Nexium because she felt that I was in a cycle that it would help to break.  I did that for three weeks, did not have an allergy response, which was good.  I then went back to Carafete/Ranitidine (generic Zantac) with the protocol of 1 Carafete before the main meal (whether lunch or dinner) and 150mg Ranitidine in the morning and 150mg at night. 

    Well, this is working now.  As long as I am super-careful about a few specific things (sadly alcohol being one of them) I am usually pretty comfortable.  I still have to sleep in a close-to-sitting position and I still have shortness of breath, but it's not too bad. I can drink small amounts of coffee now which helps me at the gym (improves my breathing.)  The horrible horrible indescribable sensations I was having so much of the time last year (and the year before!) rarely occur now. 

    I spent at least a year trying to figure out how not to use too much medicine.  I resisted the higher dosage suggestions that were first presented, and early in this process nothing really seemed to help.  I can't say I have ever learned to be patient about this but I am so grateful to be feeling better, and so grateful for this forum!

    Laurie

  • Breatheeasy

    My GERD was so bad Zantac never helped. Then I used PPIs for a week and it got better. I am yet to go for endoscopy but keep delaying it like an idiot. Does it feel uncomfortable? Can you breathe during endoscopy? My dad said it’s very uncomfortable. At the moment my shortness of breath has gotten really bad and I think it’s the air quality where I live. 

  • LG2017

    It's interesting that you had such a fast positive reaction to a PPI.  I was on the first one for months and did not feel much better during that time.  Overall it just took a really long time for things to die down to something closer to normal. 

    I do notice a difference in breathing based on air quality – the weather reports around here always provide information about how bad things are.  During hot weather it's usually the worst.  But… the last few times I felt really compromised breathing were definitely from the GERD.

    I had my endoscopy at the same time that I had a colonoscopy – I was under anesthesia during the process and felt nothing whatsoever.  I think it would have been uncomfortable if I had been awake, but I would also think the doctors would provide something to make you more comfortable if you are not having anesthesia.  Not sure I can provide any assurance over what you might feel if you have this procedure, but it is the only way that a doctor can really tell the level of damage you might have in your esophagus.

    Laurie

  • Marie E Natzke

    I have gerd and asthma as well. I have to stay up for 3 hrs after I eat before I can lay down. I also have to stay away from chocolate soda orange juice cranberries tomato sauce..the list goes on. I was also told not to drink coffee but I need a little caffeine . So I have iced coffee. They say It isn't as acidic as hot coffee. It takes at least 10 hours to brew it in the fridge and because of that it looses its acidity. My Dr changed my med too. I was taking prilosec and now taking pantaprozol. Excuse the misspelling if I did misspell it.

     

  • LK

    I, too, have GERD and asthma.  I take pantoprazole in the mornings and Pepcid AC in the evenings.  I also don't eat within 3-4 hours of going to bed and I have the headboard of my bed raised.  I had an endoscopy a few years ago.  They sedate you and you don't feel a thing.  Here is what the Mayo Clinic has on upper endoscopy - 

     

    For me, my doctor was looking to see if I had Barrett's esophagus.  Thankfully there was no sign of it.  

    I know it is hard to undergo a new procedure but, as I try to tell myself ( and sometimes I listen!       )  , it is better to know what I am dealing with.  The uncertainty and stress of wondering if I have something is always worse than actually taking action and addressing the problem.

  • Breatheeasy

    @LG2017 prantoprozole or however it’s spelt did not give me any relief. It caused tightness in the chest for me. Or it could have been something else but when I switched to rabeprazole the relief was instant. I took it for a week just to make sure the reflux was in check. I do have some reflux from eating too much at times but it’s goes away after a half hour or so.  

     

    But ofcourse My diet is limited to a few foods which I trust. I have been developing a lot of food allergies and don’t eat out at all. This could have also helped keep my reflux down.

  • K8sMom2002

    Breatheasy, I was sedated as well when I had both my endoscopies. My doc at the time told me that they would use Versed, not general anesthesia. I was fine for both of the procedures, and they really did rule out things that needed ruling out. 

  • Breatheeasy
    K8sMom2002 posted:

    Breatheasy, I was sedated as well when I had both my endoscopies. My doc at the time told me that they would use Versed, not general anesthesia. I was fine for both of the procedures, and they really did rule out things that needed ruling out. 

    Yeah I gotta brave it. I guess I can use my inhaler if I have an issue. 

  • LK

    BreatheEasy,  Not sure if this has been mentioned but any and all concerns with your doctor and the anesthesiologist or nurse anesthetist who takes care of you.  You can do it!  

  • K8sMom2002

    What a good reminder, Lisa! Breatheasy, I hope you can have a good talk with the doc and the anesthesiology staff who would assist with the procedure.

    LG2017, I'm glad things have settled down. It is interesting how with some people, a medication has an immediate positive effect, and yet with others … not so much.