New Symptoms / First Hospitalization

Hello and thank you for reading!

I have had ME/CFS since 1989 and have been mostly a mild to moderate case, symptom-wise. Since last Summer, however, I have begun getting worse. Not sure why. Four days ago, I crashed to a low I haven't been to before and ended up in the hospital. My question relates to the symptoms I had while there in the hospital...

• I had a heart monitor the whole time - was having several PVCs a minute.
• Would have episodes of sudden, severe air hunger with any exertion - including sitting up in bed.
• During several of the episodes, the nursing staff were checking my vitals - BP, Pulse, O2 sats. None of which ever were changed more than slightly due to the sudden hyperventilation (except resp rate, of course).
• Couldn't stand for more than a minute. Would develop the heavy, deep breathing within moments of standing.
• When lying down, breathing would return to normal after a minute or two.

Anybody experienced or heard of something like this?

Thanks for any responses!!

Hello ArgyrosfeniX,

Welcome!

Yes, I have twice experienced this and have been very puzzled as to its cause.
On both occasions it occurred following brain stem injury associated with a very rapid and damaging hike in BP. It was suggested to me by my ME consultant that my BP was over compensating for the hypofusion in the brain with more gusto than was useful. The second attack left me unconscious for some hours and the first caused me permanent vestibular damage resulting in a Meniere's type disease.

On both occasions, the severe breathlessness and sense of suffocation lasted for three weeks after the event. If I tried to walk a few steps from my sofa or, much worse, tried to speak on the phone, I was left gasping for breath. It also became much worse quite suddenly at 4 p.m. in the afternoon. In the 30 years of having ME, I have never experienced this before.

I have tried to piece together the course of events in order to identify the trigger as it is very unpleasant and I would like to avoid this happening again.

On both occasions, it began the day after my discharge from hospital, the first time from A&E and the second from the Emergency Medical Ward. The first time I was admitted immediately after the brain stem event, but the second time it was a week later. I had thought, as the respiratory centres are located in the brain stem, maybe the injury had triggered the faulty breathing and sense of suffocation. However, it seemed to correlate with the day of hospital admittance rather than with the date of the injury.

I carefully thought through the events of each hospital admittance and only one thing seemed of relevance: both times I had been put on oxygen. The breathing problems happened within 48 hours of being taken by ambulance and having a mask placed on my face, which did seem to help at the time.

Since that time, I have read about Dr Cheney's theory of oxygen toxicity, and I just wondered if this played a role in my new symptom. These were the only two occasions I have been placed on oxygen since having ME and have been the only two occasions I have experienced this problem. I don't know if Dr Cheney's theory has panned out. Maybe someone here can tell us.

ArgyrosfeniX, were you put on oxygen before your attack?

Kindest regards,

C.G.

Thanks for the responses!

[2 Mark]: I can understand the anxiety angle, and am very certain it wasn't one of those. The initiation of these has always occurred with some form of activity since they started about 11 days ago. One item I forgot to add is that prior to January of this year, I was a Registered Nurse in an Emergency Department. My ME finally made it too difficult to continue the career I enjoyed so much... Thank you for your thoughts and input. I had considered that possibility.


[2 Countrygirl]:

In recalling what happened when I was in the Emergency Room, my first blood pressure was extremely high - 192/90s. I was having some chest pain at the time with left arm numbness, so they treated me as a cardiac patient and gave me aspirin and nitroglycerin. The blood pressure eventually came down to my normal levels, but I can't image why my pressure was so high...

This sounds exactly like what I was having for the few days before my visit to the ER (except for the 4pm issue).

I wasn't on oxygen for the few days before nor during the event that caused me to have my wife take me to the Emergency Room. Once there though, I was placed on 2 Liters via nasal cannula, which stayed on for a large part of my stay in the hospital. Honestly, the episodes got much worse while I was in the hospital - could be related to the increased oxygen. I don't understand why it would initiate episodes with any sort of activity though - even the angling of the bed to more than 45 degrees was enough to set it off.
C.G.

Any additional stories about something similar or any additional information about Cheney's Theory would be more than welcome!

Same here,. Before my 'attacks' I experienced pain in my chest. I found it difficult to get comfortable lying down as there seemed to be a painful area in my lung. When the chest pain subsided my BP skyrocketed to 230/120 and my brain blew its fuses. The hospital told me that my results indicated that I was a cardiac patient. My GP didn't pursue this as he doesn't approve of ME patients having tests, and, although the cardiac department called me in, I was too ill to attend the hospital, so it has never been diagnosed.

Did you receive a diagnosis , ArgyrosfeniX ?

C.G.

No, I didn't. The hospitalist services' MD stated "I can tell you what it isn't...". But, of course, he was treating me like a normal patient - not sure he knew anything about ME. Before I was discharged, I made a formal request to receive all of my records - ER to discharge, so my Internist and I can review them and maybe figure something out. My Internist is a good guy that has been treating ME patients for 2 decades, but I'm not sure he has ever really delved into the disease process itself. He's more one of those "treat the symptoms" types. He is, thankfully, open minded though and I've been able to help guide my treatment.

Anyway, the hospital basically said "we don't know what's wrong with you, but whatever it is, it isn't life threatening." Hence, they asked that I follow up with GP. Frustrating as hell to have all that technology right there, just begging to be used to help me, and being denied access due to limited scope of disease process.

Went to see my Internist last week and he wants me to be evaluated for POTS. I know that I've read some things about POTS in ME/CFSers over the years, but I don't have the energy to do the research right now. The hand out I was given had a single sentence stating that ME/CFS was sometimes a factor in POTS.

Anyone know where I can find some quick, clear info on POTS and how it relates to our disease?

Thanks!

Sue Jackson's blog has links to info about POTS. She makes no claims to be a professional healer but is a well informed patient. Her blog is at : http://livewithcfs.blogspot.com/ and within that you can search for POTS/OI (orthostatic intolerance)
Just tell you waht I've found with air hunger:

I have never had it as severely as you, but I know well that feeling of suffocating, breathing, not getting any air. For a few months I used a supplemental oxygen machine in my house a few hours a day. It did help but was obviously a stop gap rather than a cure for the air hunger.

I started amonth ago on Freddd's b12 protocol. Since then I have not had to use my oxygen machine much and have much less air hunger. Jarrow Methylcobalamin taken with Solgar metafolin has helped a lot. There is extensive info here on the b12 protocol if you're interested in it. Serum b12 tests were inaccurate in my case, masking a need for b12. I'm still ill at this stage but the air hunger is reduced so much.

I hope you can get better soon!

Indeed POTS and OI are often found in ME/CFS patients. If you do a search on this forum you will see many threads. There is even a section in the forum dedicated to this topic under treatment and therapy.

I have also had really scary incidents like you describe, though I don't have POTS, I have OI. Both are related to dysfunction of the autonomic nervous system. You might also want to look at the forum and website: http://www.potsplace.com/ which is dedicated to this topic but usually discussed it separate from ME/CFS.

Welcome to the forum!
Sushi

Sounds very much like POTS to me. I think I have had age related triggers with ME. As I also have EDS I am not sure how much that is playing a part in the autonomic dysfunction. i suspect hormonal triggers to be part of my relapses.

Thanks for your responses!

Thanks L'engle, Sushi and sandgroper for your responses!

I'll start digging into that information asap!

For an update:

Have an appointment on the 20th for the evaluation. Wish me luck!

Boy, this sounds familiar! I have had POTS for two years, CFS for 18. My POTS had my bp VERY high. Now it is low and normal. BP is not how you diagnose, it it the heartrate after standing. 30 beats per minute higher at least.

Air hunger is very common with POTS. You would be horribly dizzy, lightheaded, nauseated, chest pain and many other symptoms. BP is low a lot of the time, but can be high as well. The Autonomic Nervous system controls SO much.

I hope you can find out if POTS is the problem and you can start getting help! There are a lot of things that can help.

I can help with any questions about POTS if you have any. There are sites and info out there. Also, great videos on You Tube.

Hi

A great site on POTS in general is at http://www.dinet.org/ .

One of the main ME/CFS organisations has said that 90% of ME/CFS patiences get POTS (umm it may of been 95%).

I dont know if it was related to the ME/CFS or my POTS... I assumed it was the ME/CFS, thou I havent had an eposide like you described, I did have a severe air hunger eposide one Christmas after I'd really over done it (Id attempted to peel all the vegetables for the family) while already in a bad way.

I wasnt at all panicing but I thought during the air hunger I may end up dying, it was like my very cells themselves were being suffociated and being starved of oxygen and really needed more oxygen.

My air hunger went on all day and continued during the night). Had we not been in the middle of christmas day and christmas, I would of got someone to take me to the hospital to get some oxygen or something. (this is the only time Ive ever wanted oxygen for a ME/CFS symptom... the air hunger from this ME crash was far worst then what I experienced when I was in hospital with double pneumonia on a drip).

All I could do was watch the family from the bed where I was laying...while taking big deep breaths which didnt help but I didnt know what else to do, hoping I was getting enough oxygen to keep going on).