Chronic Hyperventilation Syndrome / Hyperventilation / Air Hunger / Dypsnea
Posted , 8 users are following.
Hi my name is Austin. 27 year old male
After suffering with unknown dypsnea since october 13 2017 i finally went to the Mayo Clinic in Rodchester MN. Their is hope for those suffering. I woke up on the daily breathing as if i had just run a marathon feeling as if i could only get a quarter or half breath. When i would get a full breath it was such a fleeting feeling of happiness because i knew it would only buy me a couple seconds of peace. Laying down, Standing up, Sitting with my loved ones, walking from couch to bed. I was sure at any moment i was going to die. To be honest most morning i hoped i didnt wake up because waking up meant another day of this nightmare. I had two chest cat angiograms both with radio dye one of lungs one of heart, a full angiogram MRI/MRA with gallium of my brain. A workup at the best hospital in the world. 2 cardio stress tests/ two echocardiograms/ pulmonary stress test/ pulmonary function test aka phone booth/5 different standard asthma tests. 8 visits to the ER 20 plus doctors visits, Albuterol/Levabuterol/Xanax/Ativan/Valium/Zoloft/Lexapro/Symbicort/Spiriva/Advair/ and the amount of natural things i tried are almost 3 dressor drawers full. the only i mean only thing that works for brains like ours who become aware of our breathing process and helps to fix it is amitriptyline. https://www.oatext.com/The-beneficial-effects-of-oral-amitriptyline-in-anxiety-induced-hyperventilation-syndrome-a-case-series.php . Please don't let doctors try to talk you into the f*****g unbeleivable amount of things that was tried on me as some of the withdrawals are horrific especially benzos. If they need a reference please just let them read the article. And to anyone going through this if your scared your not alone. Im sorry this happened to you as well and i hope it slowly fades as mine has i hope my research helps even one person to shorten the time they feel so terribly. I was on 30mg of Amitriptyline for over 6 months and now ive tapered off 2.5mg at a time still have a while till im totally off. just take it slow to feel better amitriptyline is hard to get used to the first 6 weeks and any dosage increase i went from 10-20-30 is difficult but omg the first couple days where you find you don't have the issue make any pain worth it. Please i know what thoughts this disorder causes people to think i was there. Just understand there is light at the end of the tunnel.
3 likes, 18 replies
GADGUY austin11
Posted
joined just to respond to your thread. i don't know if you still follow, but at your suggestion i just convinced my Dr to give me a prescription. I am optimistic based on your post. i have lived with CHVS for a decade and like you have had dozens of tests and tried every MEDICATION you listed. if this works, you will have saved my life. only those who have lived with this disease can understand how awful it is living with this day in/out. hope you're still feeling great. BEST, GADGUY
austin11 GADGUY
Posted
just finally tapered off amitriptyline finally two weeks ago and am back to feeling like myself. i pray to god it helps you too. i cant imagine going through it for so long. and yes i was right where you were please dont give up brother their is light at the end of this tunnel. ill respond to your messages on here.
Guest GADGUY
Posted
How is it going? would love to know if it's helping at all?
Guest austin11
Posted
Just wondering how it's going?
GADGUY austin11
Posted
i definitely feel better. MOST NOTABLY MY PANIC HAS BASICALLY SUBSIDED AND MY STOMACH(IBS) issues resolved. I WANT TO SAY MY BREATHING IS BETTER, but its only mildly better. IN THE SECOND WEEK, I DID HAVE A HALF DAY WHERE I FELT COMPLETELY NORMAL. unfortunately my symptoms returned. IM ON WEEK 5 now, so i hope they continue to progress.
Sky1290 austin11
Posted
I have had this breathlessness for years, exactly how you describe here. Years of self-help, breathing exercises, strengthening diaphragm... nothing helped. I showed my Dr. your post, and now I will be trying this med. 10mg to start. better to take at morning or night?if this works you will save my life.
Guest Sky1290
Posted
It's worked for me!! I've only had this issue since early January this year but started taking 10mg of amitriptyline about 6-7 weeks ago and I can't tell you how much better I'm feeling - it truly is a miracle. I went up to 25mg (over a few weeks) but as of last night I'm dropping 5mg a week and I hope to be off it by the end of June. You need to take it at night - 2 hours before you go to bed as it also helps you sleep. Start at 10mg and go up weekly 5mg (you'll need to break one in half) until you start feeling you're on top of it. If you've also had breathing training you should be able to hit this on the head - good luck.
austin11 Guest
Posted
sorry for not replying earlier bud im completely better now. a note of caution i did 2.5mg every two weeks. it was easier on me. if i went too fast i got a little rebound breathlesness. so glad your back!!!!!!!
austin11
Posted
i mean 2.5mg when coming off
Guest austin11
Posted
Thanks for the tip. I will definitely monitor how I'm going. I don't think I've had this for as long as most people - got onto it pretty quickly so hopefully it means I'll get over it a bit quicker as well. I really can't believe how much better I've got in such a short period of time by taking a tiny little tablet!!! Thanks for the reply.
kian21331 Guest
Posted
Hi Guest and austin11, I'm unsure if you still check this forum and site as it has nearly been a year since last message but hey worth a shot! I am currently experiencing my second bout of chronic hyperventilation (brought on both times by bad chest infections and repetitive deep breathing as a result). I had all the symtoms, constant air hunger, panic, anxiety all due to not being able to get a satisfying breath. This began for the second time around August 2018 it wasn't till July of last year that I took up Amitriptyline which has been a god send! Just like you say it takes some time to get used to but it is so worth it. I am about 90% better after 10 months of taking it (currently 30mg a night). I have 2 questions - did you taper off when you felt 100% back to normal or more 90%? And is it normal to have good days (where you feel you can practically breath normal without having to think about it constantly but that that could be followed by a bad day where breathing is notably worse?) I am getting a lot of inconsistent days lately but it seems that every bad day brings me closer to baseline again i.e. for every step back I seem to be taking a huge leap forward which is good!
Anyway thank you so much for your thread here amitriptyline has really changed my life and I'd love as much people that suffer from this debilitating disorder to know that there is a very real and practical light an=t the end of the tunnel. You are a modern hero, sir!
kian21331 austin11
Posted
Hi Guest and austin11, I'm unsure if you still check this forum and site as it has nearly been a year since last message but hey worth a shot! I am currently experiencing my second bout of chronic hyperventilation (brought on both times by bad chest infections and repetitive deep breathing as a result). I had all the symtoms, constant air hunger, panic, anxiety all due to not being able to get a satisfying breath. This began for the second time around August 2018 it wasn't till July of last year that I took up Amitriptyline which has been a god send! Just like you say it takes some time to get used to but it is so worth it. I am about 90% better after 10 months of taking it (currently 30mg a night). I have 2 questions - did you taper off when you felt 100% back to normal or more 90%? And is it normal to have good days (where you feel you can practically breath normal without having to think about it constantly but that that could be followed by a bad day where breathing is notably worse?) I am getting a lot of inconsistent days lately but it seems that every bad day brings me closer to baseline again i.e. for every step back I seem to be taking a huge leap forward which is good!
Anyway thank you so much for your thread here amitriptyline has really changed my life and I'd love as much people that suffer from this debilitating disorder to know that there is a very real and practical light an=t the end of the tunnel. You are a modern hero, sir!
kian21331
Posted
Did you get relief in the end? Would love to hear how you've progressed on the amitriptyline.
kian21331 Guest
Posted
Did you get relief in the end? Would love to hear how you've progressed on the amitriptyline.
chloe39961 austin11
Edited
Austin11 I cannot thank you enough for this post!! For the first time in 4 months I feel hopeful that I can beat this awful air hunger feeling that I battle with all day everyday!!!
I too have been prescribed a long list of meds that have not helped in the slightest. My doctor has agreed to try Amitriptyline starting on 10mg tonight.
Please if there are any other success stories I would love to hear from you!
Very grateful for all who have shared on this thread. 🙌🏽💕
amber8607 chloe39961
Posted
Hi Chloe, ive just started taking Amitriptyline due to this problem. Can i ask what your symptoms are? Mine feel very different to everyone elses just wanted to know whether this would work for me. I wish you all the luck that this works for you. Its truly horrible X