involuntary catch or "shuddering" breath intake- just a survey

[Robgump]

I was wondering if anyone else has experienced this, kind of like when a small child has been crying/sobbing and is recovering and they have a shuddering, stuttering or "catching" intake of breath? Related to Imbruvica? it doesn't happen all the time, coming in spells at times. My P.A. says the it happens sometimes when red cells are being destroyed, but blood work shows nothing. First noticed when my white blood cell count got high >90K. It is a little disconcerting and I decided to actively search, a "shuddering breath" search shows lots of questions and not many answers.

Cheers!

[Cllcanada Top Poster CURE Hero]

Sounds like gasping breathing... you need to talk to your Imbruvica (ibrutinib) prescribing doctor and get referred to a cardio-oncologist...

Atrial fibrillation or flutter, might cause this... on Imbruvica (ibrutinib).

Could be a diaphragm issue as well...

en.m.wikipedia.org/wiki/Ago...

~chris

[Ironj]

I’ve been getting that exact symptom for 15 years off and on. I’m not on any meds for SLL/CLL. My doctor tells me its from palpitations skipped heart beats. The feeling is like you loss your breath for a split second sometimes just one somtimes several in a row. Then I feel strange after , kinda nervious kinda worried it’s going to happen again so I do slow breathing. In through my nose for a count of 4 hold my breath for 3 sec and exhausting slow for 5 seconds. I do this for 5 min and I feel very relaxed. When it first happened I went to the ER it was happening on and off for an hour. I was hooked up to an ekg for a while and every thing was fine. I then followed up with a stress test a few months after because it was happening on and off , nothing abnormal showed up. In closing if you drink coffee or other stimulants along with your new meds may be causing the the symptoms that sound like skipped heart beats that are taking your breath away as you described.

[lexie]

I had that happen a lot when I woke up in morning about 12 years ago, exactly like I had been crying. I usually recall my dreams and not were upsetting, no physical evidence of tears. It was a stressful period and following a few weeks of the sensation I developed shingles. Stress is the only link in my case, no heart rhythm issues. It disappeared as oddly as it appeared. Doctor had no ideas.

[Concerned77]

Hey robgump, I have been experiencing the EXACT same thing and I don't know why. Doctors have given me no explanation. I have anxiety and possible nerve damage from rocky mountain spotted fever. Wish I had a definite answer!

[Robgump in reply to Concerned77]

(The following statement is an expression from my personal experience and opinion, I am not giving medical advice.)

How high is you WBC? My symptoms only occur at elevated WBC (26K or higher).

I had a complete cardio and carotid artery scans, that showed very little calcium deposits, no narrowing, BP averages 108/64. My oncologist said that RBC destruction can cause this symptom, but there is no evidence in my case for this. I have spoken with 12 different specialists, searched countless research papers and cannot find any than a passing mention with no related cause. I currently have been off Imbruvica for 6 mos. with normal WBC. I take LDN (low dose Naltrexone), 4.5mg which seems to have increased my time at normal levels due to the suppression of EBV on my immune system.

I have noticed that the side effects from the Imbruvica get progressivly worse as my WBC counts approach normality. I usually reduce my dosage accordingly to alleviate my symptoms from side effects.

Relax, I think it is at worst a minor issue, although as with anything unknown, a little disconcerting at first. If it were something major, there would be something in the research.

BTW, It is NOT agonal respiration which is completely different.

Cheers!

[Jute]

I have had theses episodes for years and mentioned it to cardiologist, GP and Endocronologist and they just blew it off. I do have SVT and have had two ablations, and sleep apnea with c-pap. Sometimes I do this after waking up, but more so during the day. Usually a few times a week. Today has been exceptional, five times so far. Any suggestions?