Chiari Online Support Group

SpO2 and low heart beat during headaches

I have permanent tinitus, and have a bad back due to a car accident some years ago but otherwise am okay except when I get these headaches. Over the past two years they have progressed worse from nausea, pounding+whooshing in head, pain and feeling of pressure in head and especially behind eyes, with severe lethargy.

Every hour or so I get a “peak”, things build up getting more uncomfortable to it where something happens, a combination of the following (may have missed some…)

  • Sweat heavily
  • Throw-up
  • visual disturbance, anything from squiggles to complete loss of vision in right eye/double vision in both (had that then continue for several weeks)
  • Muscle Weakness/Drop attack, normally for several minutes
  • Blank out, people who observe me say I lay there for ~3 minutes still with eyes rolled back, I come back around without feeling absolutely okay.

After this peak I feel better and it then builds up again and I repeat this loop for hour after hour… Or I feel fine and its all over, actually normally I feel absolutely fantastic (tired but elated) with manic levels of energy for a few hours when its stopped. I used to think it was a side effect from the codeine, but this happens without taking it too.

Just recently I purchased a Oximeter, a Masimo radical-7 since it has long term monitoring and the apnea group recommended it, because I woke up during the night feeling like I couldn’t breathe so I suspected possible sleep apnea.

I’ve tried wearing it during these headaches though and found some surprises.

Sometimes the alarm on it will go off as I’ll find my SpO2 (oxygen) goes below 88%, lowest I recorded was 78%, before going back up to the usual 96-100%. When this happens I do feel confused.

Other times I have had the pulse rate alarm go off when my heart beat has been recorded below 50, the lowest I saw here was 43, this is accompanied by a severe pain in the head so its certainly not imagined and the worse of it lasts around 5-10 seconds.

Both events do not seem to happen at the same time though. While both are happening I’m sitting/laying still.

Has anyone else measured and seen this?

I have had my heart beat measured before where it crashed during these “peaks” in an ambulance (apparently I went grey), another time it went completely the other way and went right up one time when I blacked out (I had 188bpp noted on the chart at the end of my bed - I blacked out at the end of a 6 day headache).

But I’ve not seen this with the SpO2, nor can I understand what would cause this to happen, I think I saw my heart beat go a little irregular on the pleth display, but I couldn’t really be sure it happened both times and that part of the meter isn’t very accurate (would need to buy a proper heart monitor for that…).

Currently while a Chiari malformation was diagnosed back in January 2017 the neurologists I have seen still do not believe it has anything to do with the headaches I suffer from and have called them migraines. Although no one has said what type of migraine it is specifically, I’m seeing one on Monday, and will be asking exactly which migraine matches all my symptoms, which would be amusing :smiley:

Have you seen a neurosurgeon? I think that’s whgat you need to do. Make sure yoj find oine who deals with Chiari.

Your symptoms and recorded vitals are quite interesting. I have to agree that a neurosurgeon would be high on my list to see.

If folks are convinced that migraines are your issue, I would suggest diet assessment, habit assessment, trigger identification BEFORE jumping on board with medication. It takes more time to figure those things out but a person can end up with less significant side-effect producing medication. You will have to keep us posted on your journey

Thanks for replies. I have not seen a neurosurgeon yet, the system in the UK seems to put people in front of Neurologists first who are supposed to then recommend someone to see, then referred to a neurosurgeon if needed.

I’ve checked diet and tried cutting things out etc, so far in the past two years nothing seems to have affected things.

Recently I have changed to Toporomate, although I’m only handling 1/2 the amount the original neurologist wanted me to take. To be honest I think it might be having an affect, but at the same time I did try one other simple change which was in making sure my neck position was aligned to my shoulders when sleeping.

I might try stopping it for that reason and seeing if I stay headache free, my suspicion is that my problem isn’t migraines at all, but that any headache (such as a hangover) rapidly turns into a Chiari epic. I’m finding the drugs like Toporomate very heavy on the system to be honest, I guess its hard to get a headache when your snoozing all the time…

I did just see a Neurologist on Monday, mainly about a medical to be approved to drive again, however he came out with something very alarming that contracted the previous ones. One of my blank spells where I passed out occurred at work was witnessed by several people and described to me, I described it to him and he said it was definitely epilepsy (even though my EEG came back negative) and would diagnose it as epilepsy based on this as it could be nothing other than this.

Fortunately the person who witnessed it had a brother who used to pass out in exactly the same manner (perfect replica - he checked my reflexes), in his case it was due to a collapsed artery in his neck causing a lack of oxygen to the brain. At the time I felt faint, which would chime with the diagnosis of vasovagal syncope for passing out, but I’m understandably worried about this neurologist (who works for the NHS) and have booked to see another one.

If the witness had not had the experience of seeing his brother like that I’m not sure what place I’d be in, very alarming, the science of epilepsy seems to be quackery when I looked into it - no definite proof for anything! At least in the UK. I do wonder how many people have been diagnosed for this and are not actually suffering from it at all.

Of other interest, if that event he picked on was a “seizure” then it was the most amazing one ever as I went from having an abnormally low heart beat+pressure in head, headache, lethargy. Then to lightheaded to blackout. When I came to I had a normal heartbeat, no headache, felt great, not tired, totally okay. A seizure is supposed to be a brain malfunction, a malfunction doesn’t normally fix things… Anyway, rant over.

I will definitely ask to be referred to a neurosurgeon here, although I’ll have to start from scratch as I’m not going near that neurologist again. A friend who a couple of years ago trained as a nurse did a spell as a theatre surgeon up in London and recommended three surgeons he worked with for back of skull specialties. I’ll probably go with Mr Andrew Martin.

As an aside he did mention when he saw the black cowboy hat and boots in the changing area he knew Dr Marsh was in theatre (he wrote a book “Do no harm”, very good read), while he is now retired, apparently he is still available for consultations. He must be quite noticeable with that sort of cycling apparel, in his own words he looks ridiculous when cycling so he has a sense of humour :smile:

And just to add, Dr Henry Marsh is by all accounts an excellent Neurosurgeon, in this case the only reason I’d not see him is because he is retired and I’m not sure if back of the skull was his specialty.

sounds like pots
Have you heard of Pots?

I would be concerned about being labeled with seizures just from this neurologist and what he thinks. I had seizures at night a few times, witness by my husband that sound like yours (who knows though!). My neurologist did NOT think that they were seizures though still had me do all the testing. He thought that blood flow to the brain was more the issue as well.

Good luck with navigating your health care system

I’ve not heard of pots?

Yep, I’m extremely concerned about being labelled as having seizures as it gives me a whole boatload of new problems with actually no solution or understanding of the problem. I think I’d like to see them prove via EEG that the brain is seizing first before making a diagnosis, and such a diagnosis should not be made when the brain is being starved of oxygen.

This is actually a recommendation I saw NICE (national centre for clinical excellence) in the UK make, hence they say that a EEG should not be performed in the case of a suspected vasovagal syncope, I guess because without stable oxygen the brains function is going to be very unreliable.

I’ve been thinking on it, the fact is that my oxygen drops rapidly for a moment, so either my heart stops or blood vessels dilate (pressure drops). Since I don’t feel like I’m having a heart attack I think the evidence is mounting for the earlier diagnosis of vasovagal syncope, I must admit I didn’t really understand it before when it was first made. Now what causes the nerve to relax my blood vessels though is the interesting bit, but after my brains been squeezed for several hours I’m thinking anything can happen, but since my heart rate is consistently depressed during these hours long episodes then pressure seems to be the culprit.

Postural orthostatic tachycardia syndrome (POTS)

look it up!

Ah, I wouldn’t say I suffer from that. While my heart rate does seem to be a tad high it isn’t too high, nor does it go up rapidly from a supine position.

These headaches seem to have many causes, in my case I think neck and tiredness are the main culprits, but whatever they are once they get going they are nearly impossible to stop.

Sometimes I think they have been stopped, oxygen, codeine, or sumapatrin might have done the trick, or they might have been timed at just the right time (especially the last one, gave up trying the Sumapatrins in the end as they seemed to have no reliable benefit, although I wonder now if they worked only if the headache was the correct trigger for it).