hypoventilation as an early sign of ALS?

[gracefullyteaching]

Hello,
I am new here, have been reading posts for a few weeks and have found this forum supportive and informative. I have found the search feature especially helpful in looking up questions I have.

A topic I am wondering about from others' experience in early symptoms with bulbar onset is if anyone has been woken out of a deep sleep with almost a panic attack breathing episode (described in medical terms as "hypoventilation")? This happened to me within the first month of odd symptoms. All dr.s wrote it off to be panic related at the time but I could not connect my supposed panic to anything.

These episodes have not happened since the fall when my symptoms began. I have been through the wringer in medical tests, and having another round of MRIs in Boston this week to rule out MS. I have pretty much had everything except EMGs, because my next step is a neuromuscular specialist pending what these next set of MRIs do not show or show.

In a nutshell, my symptoms are--
weakened chest muscles, difficulty breathing in certain positions (deep abdomen breathing), possible muscle atrophy which I can detect, weakness, swallowing issues, speech issues (mild), now my feet/ankles are feeling stiff upon waking in the last few weeks, and then there are the all over muscle twitches (hands/feet included, but haven't noticed tongue).

My symptoms began nearly 10 months ago, which I would call "suddenly" with some odd autonomic issues to start (heart racing for no reason, feeling sick within an hour of eating) and also some sensory issues (pain where muscles meet joint area or between muscles --NOT joint pain-- never had joint pain or a fever).

I am young- 35, so most drs have written this off as stress since I have 2 kids and a full time job, but am finally feeling like I am slowly getting through that this is not normal.

Thank you for your time in reading. I am curious about the hypoventilation in sleep early on.
Much appreciated,
gracefullyteaching

 

[rcharlton]

Hi

Just curious, how did you know you were hypoventilating? From my understanding of the term, you'd only be able to verify this with a blood test.

Early signs of breathing trouble in people with ALS are morning head aches and restless nights. Nothing like what you describe.

In a nutshell, my symptoms are--
weakened chest muscles, difficulty breathing in certain positions (deep abdomen breathing), possible muscle atrophy which I can detect, weakness, swallowing issues, speech issues (mild), now my feet/ankles are feeling stiff upon waking in the last few weeks, and then there are the all over muscle twitches (hands/feet included, but haven't noticed tongue).

Breathing issues are very subjective. How do you know your chest muscles have weakened? Is your breathing difficulty sporadic? Have you had a pulmonary function test? Blood tests?

Twitching can mean any number of things or nothing at all.

Stiffness is not a symptom of ALS.

My symptoms began nearly 10 months ago, which I would call "suddenly" with some odd autonomic issues to start (heart racing for no reason, feeling sick within an hour of eating) and also some sensory issues (pain where muscles meet joint area or between muscles --NOT joint pain-- never had joint pain or a fever).

None of the foregoing are symptoms of ALS.

Hope you get some answers- and that none of them are ALS.

Good luck.

 

[curtrill]

Sorry you're having troubles. Your sleep issues sound more like sleep apnea or anxiety than anything I've read about ALS. Your sensory issues should point away from ALS. 10 months with nothing more diabilitating is a good sign. If your weakness comes and goes, that should also be encouraging. As terrible as stress may be there are treatment options. These are my opinions. I am not a medical professional nor have I been diagnosed with ALS. Get quality treatment from your doctors, get well and live a blessed life!

 

[olly]

sorry richard and curteill but i have to disagree with you here.

Often the first evidence of respiratory muscle weakness in ALS occurs at night, particularly during REM sleep. The intercostal and accessory muscles are flaccid during REM sleep, unable to assist a weak diaphragm at postural disadvantage in the supine position. The result is hypoventilation with hypoxemia and hypercapnia.

gracefullyteaching.
i have the exact same problem as you if i were to sleep flat,i sleep proped up with 5-6pillows.
i have woken up with the hypoventilation to find i have slipped down off my pillows.
i dont have als but pls.

this can be caused by weak respitory muscles or something called central sleep apnea were the brain fails to send signals to the respitory muscles.
this can be not only in als but other neurological deseases.

als is rare,bulbar als rarer but to start with respitory symptoms is hardly heard of.
in fact it some one with mnd symptoms started with respitory symptoms this could point to mitochondrial disease.
done alot of research on this and found it can mimic mnd............including atrophy,hypotonia,hypertonia,spasticity and positive babinski.

maybe you should bring this up at your next appointment,they test by blood tests and muscle biopsy.

though i was diagnosed with pls i strongly believe mitochondrial disease could be in the family and i am considering getting tested...........though it does not deter from the fact i do have umn disease probably caused by this..............if i have it.

 

[notme]

HI

You also might want to get a sleep study done. There are two types of apnea that happen when we sleep--obstruction, and as olly said, central. You can't diagnose it--but a sleep study can. When you woke up; what were you feeling? Usually--not always--but usually--a panic feeling causes us to Hyperventilate--breathing very fast.

Like Olly, I can't sleep flat. I've woken up feeling like I was being suffocated. You don't mention if you're overweight, but that can be a cause of sleep apnea (but non-obese people get it, too) There is also a sleep disorder called sleep paralysis--it either happens when we are going to sleep or waking up. It also causes a panic feeling--among other assorted symptoms.

Atrophy is kind of hard to miss when present. And, if there, doesn't mean ALS--it can have other causes.

My symptoms began nearly 10 months ago, which I would call "suddenly" with some odd autonomic issues to start (heart racing for no reason, feeling sick within an hour of eating) and also some sensory issues (pain where muscles meet joint area or between muscles --NOT joint pain-- never had joint pain or a fever).

The above do not sound like ALS. Feeling sick after eating is most commonly a gall bladder issue--of course, again, it can be other things. Stiffness in the morning is quite common as we get older, and again, can have many causes. The type of pain you describe most closely resembles that of fibromyalgia that I've had for 20+ years. Heart racing, again, can have many causes. Irregular rhythms can be detected on an EKG--or if frequent, they might order a Holter monitor worn at home for 24 hours.

Many of your symptoms--actually most of them--I share. Mine are caused by a variety of health conditions--so be careful trying to lump everything into one neat basket.

Personally, I'd start with a good internist and go from there. I'd also write down the symptoms and anything that sets them off.

Good luck to you--ALS doesn't sound like your condition--but something certainly sounds amiss.

 

[rcharlton]

No problem olly. But I don't see where we disagreed.

Hypoventilation is definitely a symptom of ALS. And I apologize if I made it sound otherwise.

It's just the waking up in a panic described by gracefullyteaching seem better characterized as sleep apnea, as curtrill mentioned.

Here is the definition I was working from:
"Hypoventilation: The state in which a reduced amount of air enters the alveoli in the lungs, resulting in decreased levels of oxygen and increased levels of carbon dioxide in the blood. Hypoventilation can be due to breathing that is too shallow (hypopnea) or too slow (bradypnea) or to diminished lung function. "

Whereas, in the case of sleep apnea breathing is momentarily interrupted.

Now, I expect that some cases of sleep apnea will result in hypoventilation.

But isn't the principal issue with respiratory weakness for PALs during sleep the gradual de-saturization of O2 and build up of CO2 during the course of the night - with the first evidence of this being morning headaches - nothing as dramatic as waking up in a panic - which is part of the problem.

Now for many PALs, breathing during sleep will only be possible in certain positions, as olly and Patty describe, and a shift in position will make breathing difficult or impossible - which would make you wake up in a panic. But I did not read this as being the case with gracefullyteaching - it just seemed that she woke in a panic from her normal sleeping position - which again would indicate sleep apnea.

We are probably just talking semantics.

 

[notme]

Yes, Richard

The "panic" is what made me wonder if it was actually hyperventilation she was experiencing--verses the waking up feeling like you are suffocating (kind of like a major asthma attack would feel)

Even a really bad dream can cause someone to wake up in a panic--and you wouldn't necessarily wake up remembering the dream.

 

[alex scared]

hi guys . . I was diagnosed with central sleep apnea a few months back . . The consultant explained to me that the difference between obstructive sleep apnea and central is that obstructve is a physical condition and central is a neurological one . I had exactly the same symptoms as this guy . . Waking up every two minutes heart thumping cos i had not been breathing . I also have twitches all over the place includin tongue and mild speech issues . . BUT. . in feb i had an emg that came back clean so try not to worry too much . Breathing problems at night (known as sleep disorderd breathing )can be due to a multitude of reasons . If als mnd is your concern i can only say what was told to me . . Respiratory onset is the rarest . . Your best bet is to go get a full lung function and respiratory workout. From there maybe a sleep study can be done and a lot can be learned from there . . I hope you get to the bottom of things and i wish you good luck and god bless . . . Alex

 

[rcharlton]

Thanks Alex.

I'm obviously confused.

 

[trfogey]

In a nutshell, my symptoms are--
weakened chest muscles, difficulty breathing in certain positions (deep abdomen breathing), possible muscle atrophy which I can detect, weakness, swallowing issues, speech issues (mild), now my feet/ankles are feeling stiff upon waking in the last few weeks, and then there are the all over muscle twitches (hands/feet included, but haven't noticed tongue).

Given how vague these symptoms are, I'm not surprised you're having trouble being diagnosed. Maybe you could give us a little more detail about these things, especially the speech and swallowing issues. Those are the only symptoms in this list relevant to bulbar ALS.

 

[olly]

hey,no problem richard..........will let you off this time lol.
to describe what i feel which is what i think gracefullyteaching feels(can i call you GT?)

i instantly wake up from what i feel is a deep sleep were i realise for a few seconds that i am not breathing..........can not feel the heart or chest moving...........this part would be called hypoventilation.
then i start to panic and take in big gasps of air,this ofton leaves me choking..........this could be thought of as hyperventilation but really its triggered by the hypoventilation so therefore hypoventilation is the cause.

thankfully it does not happen ofton as its one of the most scareiest things to go through.

GT, i just noticed you have sickness.........a classic mitochondrial symptom.

 

[gracefullyteaching]

Thank you to all of you who have taken the time to read and reply. A few more details-- along with the onset of sudden symptoms, waking in the middle of the night with the "hypoventalition or panic" episodes, the sore rib cage/chest muscles feeling heavy has not gone away. It started in a small spot and seemed to spread to my entire chest area, then the neck (left side), terrible pain in neck, now that side feels weak. It is almost as if the muscles were under attack and have since weakened. Same with the left shoulder area. I have visible atrophy around my wrist area. When I clench my wrists you can see the tendons pop out with a concave area where muscle should be.

Another detail that is of importance is all of the crying I did after the onset of symptoms. For the 1st time in my life I had to go on anti-depressants. I was (and still am) feeling so scared about the major changes in my body. I was crying at the drop of a hat and talking irrationally about dying. It is the weakening of the breathing muscles which scare me the most. I get winded easily. It started on left side but feels like it could be spreading. Not sure....

Anyhow, the national ALS site does state stiffness as a symptom on their webpage, so I was wondering if my recent feet/ankle stiffness has anything to do with this odd neurological set of symptoms. The drs agree it is neurological, just haven't given anything a name yet. I am under the watch of one of the top MS researchers on the East coast, and he is prompting a move to a neuromuscular specialist next depending what the upcoming MRIs do or do not show.

Hmmm, Mitochondrial disease, I will have to inquire about that. You all seem so knowledgeable, and I would agree with what another person wrote somewhere on the forum-- it is challenging or impossible to try and put our symptoms into "Boxes" which doctors try and do. We all have our unique symptoms.
Bless you all-- thank you much.
Gracefullyteaching

 

[alex scared]

grace hello again . . The symptoms you name (heavy chest feeling , getting winded easily , disturbed sleep , all sound exactly like me . . I am also mid thirties . Like a lot of people i had the als fear grasp me tightly (i think i managed to drive people crazy ) but the odds you having mnd or als that presents this way at your age are quite low . . Thats not to say that something is not happening but als or variation of mnd is pretty unlikely and not something you should jump to . My symptoms started just bout year ago and here i am still working and last night went for a two mile walk . So take comfort that it could be something aside from your worst fear . . As i said a full lung function workout might be helpful and if your sleep is disturbed then a sleep study can help you get to the bottom of what is happening at night . . Seeing as we are so samey in symptoms then please feel free to goto my profile (click on my name) and leave any questions there . . Would be glad to help if i can . . Take care and try not to worry . . God bless alex

 

[notme]

Hi

If you've been reading here--I'm sure you've seen it posted many times--PAIN isn't part of ALS. While some will feel pain down the road from spasticity and other assorted things, it's not something early in the process.

Stick with your good doctor and with whatever referrals he feels are necessary.

 

[trfogey]

gracefullyteaching,

The fact that ALSA has stiffness on its website really doesn't make it more likely that the package of symptoms you have add up to ALS or any other MND, for that matter. Quite frankly, your story, from its onset to your description of its progression, doesn't sound anything at all like ALS. In fact, if it weren't for your muscle twitching, I doubt that you would ever have happened upon our little community at all, and all the reading you've done about the symptoms of people who never had ALS have served to confuse the issue further.

With ALS, it's not how your body feels, but how your body fails. ALS is a progressive degenerative neuromuscular disease, which means that, over time (and a short time at that), more and more nerves and the muscles that they control will fail -- permanently. It starts in one part of the body -- a hand, a foot, your mouth or tongue -- and spreads through the body from there.

If no muscles are failing, it's not ALS. If the muscle failures aren't spreading -- from the fingers up the arm, from the foot up the leg, or from the tongue to the rest of the mouth and throat -- it's not likely to be ALS. If your problems come and go, it's not ALS.

Good luck to you.