Distressing Nocturnal Episodes

[Womble]

Hi

Apologies for the long post.

I'm a newbie and have just posted an introduction, but thought it better to start a separate post about this, as the history/details are quite long-winded and I'm really getting pretty desperate for some answers and/or reassurance about what might be going on.  Both my husband and I are beyond exhausted this week, as I've had episodes like this every night since last Friday and neither of us have had anywhere near enough sleep.

I started having these episodes in 2012.  They are very hard to describe, especially as I can't always remember the details of what happened during them, but I have my husband's description, as well what I can remember to go by.

What happens is I wake, usually between 3.30 and 4.30 am with what I can only describe as a dropping/sinking feeling.  Not like the dropping feeling people sometimes get as they fall asleep, that makes them jerk awake, something that feels much nastier.  It actually feels as if I am slipping away (I know that sounds overly dramatic) but it is really the most horrible feeling.  Then the feeling starts to build up and up, again, very difficult to put into words but, it's like some sort of prodrome that always leads to a full on episode.  The best thing I can relate the prodrome to is the sort of adrenaline build up you get when you are anticipating something bad happening.

Eventually I start to feel like I have no choice but to tense the muscles to the max - always in my arms and legs, but sometimes my back as well and I start to yawn.  The yawning is so deep that it over-inflates my lungs until my ribs hurt, but while I get the large intake of breath, I can't complete the yawn.  There is no slow exhale, I find I can't exhale properly for what feels like an age, then it's a sharp, sudden outtake of breath, which really hurts and snaps my jaw shut at the same time.  These yawns come back to back, thick and fast and I feel lightheaded and dizzy.  My eyes also water uncontrollably.  During the episodes my legs and arms and sometimes back will repeatedly tense and stretch out.  I don't feel like this happens 'to me' exactly, but I do feel like have no choice in doing it - I am aware that sounds contradictory, but again, it's very hard to explain.  I suppose I could say it's akin to something like RLS when people feel the compulsion to move their limbs, but having had RLS in one of my pregnancies I can honestly say it's nothing like that.

After all these years of this occurring and me not having an serious consequences from them, I have learned not to panic and to try and breathe through the episode as much as I can.  I concentrate on taking slow smooth belly breaths while I'm not yawning. (Having said that, this week's have been particularly nasty and I have found it hard to stay as calm as I usually do through them at times.)

My husband is a fantastic support.  He coaches me to breathe through it (a bit like a birth partner!) and holds my hand - although often I can't stand to be touched during the episode.  I am aware of him speaking to me and can sometimes respond with one word answers, but sometimes I just can't respond, as the feeling in my body is overwhelming. Eventually it subsides and I find I am so exhausted that I fall asleep and sleep really deeply for hours.  Also, all my muscles ache the following morning, particularly my legs/arms and ribs.  In general these episodes last about 20 minutes, but I do have more brief episodes and also the occasional longer one.  I can also have several a night, but that is less common.  Sometimes I can go weeks without an episode - although I usually have at least one in the run up to my period - and other times they will happen intermittently for weeks on end.  I do know that letting myself get exhausted and/or massive stresses seem to make them more frequent and worse, which means that if I have a few bad ones and lose a lot of sleep, I am more likely to keep having them night after night.

The episodes started I a couple of weeks after an incident when I was on an, extremely rare, child free weekend away at a hotel with my husband and our friends for a celebration.  I started to feel lightheaded, disorientated and generally ill, so retired to my room.  I went to bed, but didn't have time to get to sleep before I felt even worse and like I needed to get to the bathroom urgently (wasn't sure I felt sick or like I was going to have a bad stomach, but I was expecting one of the two - although neither occurred).  As soon as I sat on the toilet I blacked out.  Woke up the wrong way around to have simply fallen off (head was under the wall-hung toilet bowl).  When I awoke I couldn't work out what had happened, all I could see what white (turned out the white was the underside of the toilet bowl, but I couldn't work that out for a minute or two).  I tried to sit up and banged my head on the underside of the toilet bowl!  I also had a massive fist-shaped bruise on my inner left arm, I presume where I had fallen heavily on that side with my hand landing under my arm and that developed quite spectacularly over the next 24 hours - it was very colourful indeed!  In addition, I had kicked a chair, which was opposite the toilet and it was out of position and facing the wrong way.  I also had bruising to both feet and ankles.  I pulled the bath mat over me for warmth, lay still till I felt I could get up then pulled myself back onto the toilet.  I immediately blacked out again and woke up on the floor - the right way around this time.  I lay there until I felt I could move, then had to crawl back to the bedroom and managed to text 'help' to my husband, who had gone back to our friends thinking I was just going to come down with a migraine.

This event was initially assumed to be a seizure of some sort.  I refused to go to hospital that night, but was taken to the emergency department the next morning.  They did basic tests and observed me for 8 hours, then wanted to keep me in, but I had to get back to my children, as my Autistic son wouldn't have coped had I not returned at the promised time and I actually felt fine by then.  Not staying in meant all the tests I needed were delayed.  I eventually had an mri (have had LOTS of those over the years) and and EEG, but nothing new was found.  I was sent back to neurology, who were very dismissive, said there was no evidence of a seizure on my scans (which were taken 2 and 3 months after the event) and that he felt my nocturnal seizures weren't neurological and probably related to the menopause (which I am not in yet!).  He also told me I must be lying as the sheer number of episodes I'd had in the preceding three months was impossible.  When I saw the private consultant he felt the incident was most likely related to pots/dysautonomia and that the nocturnal events are probably rooted in dysautonomia somehow as well.  He also said that he knows of other dysautonomia patients that have very odd nocturnal episiodes.  I have, as yet, never had another event like the major one in the bathroom and only ever have nocturnal episodes when I have already slept for at least a couple of hours.

These episodes come and go in waves and are at their worst the week before my period (hence the neuro suggesting they are menopause related).  I have found, if I take co-codamol 30/500 at about 10:00/11:00 pm, I sleep through without an episode, but I have now run out of these, as they were prescribed in limited supply for an injury.  I'm not sure I want to take them anyway, as I'm conscious of the potential for addiction.

I struggle with exhaustion anyway, but when we're having a week like this one with nightly episodes my husband also gets exhausted and life gets even harder and this week has been unbearable.  

Does anyone have any ideas what might be going on here and what I can do about it?  I would really appreciated anyone's insight or ideas about them.

 

[DADofPotsSon]

My Son#2 has had these nocturnal events quite frequently beginning at age 17 thru age 24, he is now 29.  Usually we did find that his BP dropped very severely prior to and during these events.  He has convulsive syncope as well and this seem to bring them on.  Normally between 3:00 and 4:30 am.  He even thought and I agree he had syncope during this time and on a few occasions he had convulsive syncope.  He had sleep test done and they said he had Hypopnea and was the probably cause of his nocturnal events.

DADofPotsSon 

[angelloz]

So sorry that you are having such a difficult time figuring this all out. I also empathize when doctors say that isn't possible when you know it is happening to you! I have had the bad episodes like I am slipping away, also breathing issues with that but not the muscle tensing. Wish I had more to add...going to doctors when you have other responsibilities is so difficult but don't give up on finding some help for this.

[Womble]

DadofPotsSon, thank you so much for replying.  I'm sorry to hear your son has struggled with similar nocturnal episodes.

If you don't mind me asking did your son have the muscle tightening and yawning as well?

I'm guessing it was most likely central hypopnea, rather than obstructive and therefore autonomic in origin? 

[Womble]

Angelloz, thank you so much for your kind reply.

I'm sorry to hear you also have worrying breathing episodes.

To be honest it helps a lot just to know I'm not alone with this.

I think I am going to try and push for a sleep study.  I'm just in the process of researching the purchase of a new oximeter that I can use overnight and upload the results to my mac. I have a finger oximeter, but need something that will record pulse and sp02 throughout the night.  Finding one that doesn't break the bank and also works on a mac is proving challenging, but I think may well be a necessary expense.  Unfortunately, over the years I have learned the hard way that taking solid evidence along to appointments is the best way to get doctors to take you seriously.

Knowing my luck, I'll get the sleep study and it will turn out to be a night with no episodes. 

[Katybug]

I'm thinking a sleep study could give you a lot of info if you can get a doc to approve it. And, since you know these episodes occur more frequently the week before your period, you might see if the doc will schedule the study during that week (nothing wrong with hedging your bets! Lol!)

[issie]

First thought is sleep apena. 2nd thought is MCAS. we degranulate worse at night. The issues  around 3 also indicates liver detox timing. 

Issie

[Womble]

I think you're right Katybug and that's definitely what I'll be pushing for, but won't be expecting it any time soon, as the wheels of the NHS turn very slowly - even when you have a good doctor on side.

[Womble]

Issie thank you for your thoughts.  I thought sleep apnoea at first, but my husband says he's never noticed me stop breathing and I don't snore.  I'm wondering if what Dad ofaPotsSon mentioned, about hypopnea could either mean non-obstructive ie central-apnoea that's incomplete - ie shallow breathing, rather than stopping altogether or whether shallow breathing alone could cause it.  On the times I've managed to get a finger oximeter on while I'm having an episode, even afterwards when I am able to control my breathing and ensure it's regularly paced belly breathing,  my pulse strength is all over the place, going from almost completely flat then rebounding all of a  sudden to full strength, then mid/average range and back down to flat, really erratically. This is obviously once I am awake, during the episode.  I have never seen it do that during the day, even when my pots is at it's worst.

Interesting that you mentioned MCAS.  That's something I don't know a lot about, but the only thing I think I have that's relevant to it is flushing on my face neck and sometimes torso that's very red and patchy and has no apparent cause - that tends to happen in the evening, but can crop up at other times when I am not doing so well generally.

I'm afraid I don't know anything of any consequence about liver function either.  All I know is that recent and previous blood tests have apparently shown my liver is in good shape.

[yogini]

Have you (or your husband) measured your HR and BP while these episodes are happening?  That would be the best way to figure out if it is POTS related. If you're yawning and your muscles are convulsing, it does sound like it could be BP as that is a normal body response to low BP.

[DolphinDreamer3]

I just wanted to let you know that you are not alone.  I have weird seizure-like events at night.  I usually fall asleep, then suddenly awaken shortly after.  I have this terrible feeling of doom that I cant explain. I can usually feel my heart beating all over the place. My eyes remain closed.  My muscles in my legs and arms stiffen and sometimes even my back and I am unable to breathe. Suddenly I take in an extremely deep breath to the point that it hurts, but cant exhale (breath out).   Then my legs and hands start moving in a very rhythmic pattern, my legs move as if I'm riding a bike.  My eyelids twitch and I start breathing rapidly.   I am aware of whats happening, but I can't really form a thought process and I can't make these episodes stop.  I feel completely out of control. Its so hard to explain.   After a little while, my legs and hands stop moving, my breathing eventually slows, and my muscles remain stiff for a little while, and then finally relax. I usually still can't move for a while.Then go into another episode.  I usually have 2- 6 of these episodes in a row and sometimes more, before finally coming all the way out of it.  When the episodes are over, eventually I can open my eyes. I tend to feel really confused as to where I am.  And eventually, slowly I begin to be able to sit up in my bed and move willingly, and form thoughts again. I usually feel like I have to pee when I come out of these episodes and also feel extremely exhausted. The following day I am more exhausted and worn out than usual, even though I always feel fatigued.  And my muscles tend to be sore.

Lately I have been having these episodes quite often.  They started off as just being during the week of my period, now they have progressed to at least one night a week.  I began having these episodes in August.  No one has seen me have these episodes, so they are even harder to explain.  These episodes sometimes occur on really bad dysautonomia days, but not always.  In January I finally started seeing a neurologist.  He said they sounded like seizures.  The MRI was normal and the EEG was completely normal. They finally sent me for a complete sleep study test including a night time and day time with the full EEG. There was no evidence of seizures and no evidence of any sleep disorders, but I didn't have any episodes that night.  The neurologist, said they were seizures probably and started me on Gabapentin, which helped but I couldn't take the side effects, so I am no longer on the Gabapentin.  My neurologist has been really uncaring, and I refuse to go back to him.  He didn't seem to really know what dysautonomia was either.  My cardiologist already dismissed me last year after taking me off all of my meds that weren't helping and said that there was nothing else he could do for me.  Last week I had these episodes 4 nights in a row, which is more often than its every been.  I've felt so alone in all of this.  I wasn't sure if anyone else had experienced this sort of thing.  

[Katybug]

I just thought of this....you might want to get a surveillance camera you can set up in your bedroom that can record these episodes. That might help get a doctor's attention and help them diagnose what these episodes are.

[Womble]

Yogini, we've managed to get my finger oximeter on a few times.  What that showed was my pulse dropping then raising over and over, by about 10-15 beats.  I tend to think that's due to the yawning and muscle tensing causing the increase though.  SP02 is usually higher than it is during the day, as I tend towards low naturally but it's often 98/99 during an episode.  My resting heart rate is usually between 58 and 62.  It's usually around 58 when I first wake in the morning.  During these episodes it can sometimes drops to 52-54.  When I was on Bisoprolol it was dropping down to 40 at night and I really did feel like I was going to expire then.

We haven't really managed to record bp during an episode yet.  I do have a home bp machine, but with my arms tensing and me being out of it, we've never managed a reading so far.  I have generally low bp, no always clinically low, but tending to the lower end of normal.  When I'm particularly symptomatic it tends to be my diastolic rather than my systolic that's drops  most, so I get readings like 90/54.  Again, on Bisoprolol my readings dropped through the floor and I spent the whole of Easter unable to get out of bed as a result.

[Womble]

DolphinDreamer, I am so sorry you are going through it too.  I do have to say though, that, to me, yours sound more like complex partial seizures than mine.  I don't have any rhythmical movement, it's completely random.  Not knowing where you are and needing to pee afterwards are, I believe, fairly indicative of seizures.  I do know where I am the whole time and afterwards and I can sometimes speak a word or two to my husband, but I am just very groggy and not really with it at all.

The neurologist I saw was a locum, while mine was on maternity leave.  He was vile to me, to the extent my usually very quiet and non-confrontational husband actually confronted him if he had anything useful to say and if he was actually going to do anything.  At that point he booked me in for a week long ambulatory EEG, but failed to check the regs first and as it turned out, I didn't qualify for the funding.  After I was sent a letter by him telling me not to attend the multiple appointments it involved, I was then sent a series of 'Did Not Attend' letters and booted off the neurology department's list for failing to attend appointments - bonkers!  I haven't bothered with neurology since, as after 8 years of investigations they had no clue what was going on anyway.  I would have thought a sleep study would have been the next logical step, but nothing about that guy was logical!  (He's the same guy that told me that my WML were nothing, after my usual neurologist and her boss (head of department) had said they were worrying.)

It is so hard when dysautonomia cross so many different medical disciplines, as you never seem to get so see someone that actually understands.  The only person I've seen that got the bigger picture was the private consultant I saw.  He wasn't a specialist, but a General Medicine Consultant.  Their job is to look at the whole picture and refer on to different specialists when they've got some idea of what's up, but he had a special interest in syncope which also helped.  I wish I could have afforded to carry on seeing him.

I really hope you find someone who can help get you some answers soon.

[Womble]

Katybug, that's a good idea, if we can find a way to do it.  We nearly bought a little ISP camera for watching the dogs while we're out and about last year, that would probably work.

[DADofPotsSon]

On 6/10/2016 at 3:26 PM, Womble said:

DadofPotsSon, thank you so much for replying.  I'm sorry to hear your son has struggled with similar nocturnal episodes.

If you don't mind me asking did your son have the muscle tightening and yawning as well?

I'm guessing it was most likely central hypopnea, rather than obstructive and therefore autonomic in origin? 

Yes, he did have similar type of muscle tightening and yawning!  He was told that he had no obstructive airways, he was slightly under weight!  Now normal weight!  during the sleep test his hypopnea caused his BP to drop and his Blood Oxygen to drop too!  Florinef has stopped these events due to a rise in his BP  Prior to florinef his average BP was 90/60 and now it is 130/80, his middle of the night BP during the times of his nocturnal events was 77/45, his HR really dropped too!

 

[Womble]

I had two separate episodes last night, after three nights without one.  

They tailed off as I recovered from allowing myself to get worn out a couple of weeks back.  Then it was my birthday and I had a day out with family and friends, leaving me exhausted again and that night the episodes came back.  It's also my pmt week, so that's relevant.  The only other thing that was different was that I forgot to take ranitidine before bed last night.  I do have GERD and am now wondering whether there's a possibility that some acid/vagal type stuff involved.

I will keep working at trying to untangle what's going on and am so grateful for all your suggestions.

[Womble]

Cross posted.

Thank you DADofaPotsSon.  I am currently overweight, although 20lbs less so than I was two months ago thanks to changing to a low carb diet.  So I guess it could be either with me.

Did they offer any advice/support/treatment or just an explanation of the mechanism?

 

[DADofPotsSon]

more of a test ref to explanation and report to his doctor,  what really helped is two things, biggest was florinef and then the addition of dilantin which was used as an Antiarrhythmic.  It appears his BP just dropped to low at night and this included his HR and oxygen level too!

 

Edited June 13, 2016 by DADofPotsSon
spelling correction

[Womble]

Thanks again.  

I am going to have to try and find a way to record my overnight bp as well as getting spo2 and hr readings then.  Obviously, the easiest thing would be for them to send me for a sleep study, but I know from past experience that, ridiculous as it sounds, I have to prove I have the problem before they'll test for it!

Re arrhythmias, all I know is that my rhythm is abnormal.  My cardiologist/electrophysiologist says he is still trying to work out if it's 'normal for me' or potentially problematic.   I was initially referred to him because an ECG at my GP's office threw up Long QT and a couple of other anomalies, but apparently the prolonged QT interval is not bad enough to be clinically significant.  I have now had two more ECGs with similar results and an echo that, I'm told, showed my heart and function to be fine.  I don't have a copy of the reports yet though, so I don't know what the results actually were.  I do see rhythm anomalies pretty regularly on the wave form of my oximeter, but don't know how clinically significant that information would be.  

From what I gather, in my area they are reluctant to use Florinef unless your bp is through the floor most of the time and while mine is generally low during the day, it's not considered low enough.  This morning, admittedly after racing around trying to motivate my teen to get ready in time for his school transport, it was 106/66, so would actually be considered healthy - mind you, I couldn't get my spo2 over 91/92, but I think that's something to do with using a finger oximeter and blood flow than it is actual oxygen levels.  It's rare for the systolic to be above 100, but also, on a typical day, it's rarely lower than 90. On the lowest dose of Bisoprolol it was so low my bp monitor couldn't get a reading, especially on standing tests, but also sometimes when seated.   When I had my 24 hour capture my sodium levels were less than a quarter of what they should be, so I'm assuming, if that's an aldosterone issue, Florinef would help with that.

To be honest, I am having problems getting anything prescribed by my GP, even when they have formal instructions from the hospital, as it's all off-licence and there are also arguments about whether the hospital or GP's should fund it.  I've been caught in the middle of that argument for almost three months now and still haven't received my prescription for ivabradine as a result. 

 

 

[SarahA33]

Hi, Womble, - Welcome to DINET!

How terribly frightening for you.   Ivabradine has been such a great addition for me, it's cut my hr in half basically and allowed me to start exercising again which helped a lot of my symptoms also. One thing I'd suggest pressing your doctors for is a cardiac consult to rule in/out Long QT -  I believe Ivabradine can potentiate a pre-existing condition, especially when combined with certain medications.

I'm sorry that you've had a difficult time with finding help. I was diagnosed with Generalized Epilepsy a few years ago, and found it most helpful when I saw an epileptologist. Also, he suggested my fiancé record these events on his phone when possible. I've been seizure free since beginning Topamax ER.

  I know someone mentioned this also - but the arrhythmias may be something really worth looking into. I wonder if your GP would be willing to have you wear a holter monitor for a week or 2?  http://www.jle.com/en/revues/epd/e-docs/autonomic_symptoms_during_epileptic_seizures_110095/article.phtml?tab=texte     https://www.verywell.com/syncope-and-its-causes-1746387

Wishing you the best!

 

 

[DADofPotsSon]

He is on toprol xr and dilantin both to fix his HR and  arrhythmias.  His sodium was very low too so that is where the florinef comes in.  The dr's had us wake him for a few weeks at 1 AM and have him take midodrine which eliminated his nocturnal events during that time.  I guess that was to keep up his BP and see if the nocturnal events would stop which they did, but the frequent BP test made us a 3 shifter, LOL.  His current drug combo is Toprol XR, Dilantin, Midodrine when needed, Florinef.   Lots of Salt and Fluids.

DADofPotsSon

[Womble]

Hi Sarah

I have had Long QT ruled out by both a cardiologist and electrophysiologist and it was the eletrophysiologist that prescribed the ivabradine, based on his examinations, three ECGs and an echo.

I think, in the UK, it has to be the cardologist/electrophysiologist that orders a holter monitor.  I am supposed to be seeing him again in a couple of weeks - just waiting for my appointment to come through, so will ask if he thinks that's a logical next step.

My husband recorded some odd episodes I started having around 2010-ish, where I would suddenly slump, have reduced consciousness and slur my speech.  He showed them to my neuro, who, thinking possibly complex partials, ran lots of tests and yet another mri and eeg, but didn't find anything.  They were also concerned about the possibility of TIA's for a while, but ruled that out as well.  I was on Topamax a long time ago, for complex migraine.  It did reduce the frequency of my usual migraines, but I had horrendous side effects, even on a very low dose and developed a new, longer lasting, more severe migraine while I was on it - trust me!

Thank you for the links.  I've had a quick look, but am feeling dreadful and really brain fogged today, so will have to come back to them for a proper read.

 

[Womble]

DADofaPotsSon, I think I am going to have to rope in my dh to help me get some nightly bp readings.  I'm so groggy in the night that I'd probably mess it up if I tried it on my own and to be honest, his sleep is so disrupted by my episodes these days, he'll probably be willing to do anything that might lead to some answers ... and a good nights' sleep! 

Taking midrodine in the middle of the night is a radical step, I think your ds' bp must have been much lower than mine.  I can see how it makes sense to raise bp and see if the episodes stop though.  

I salt load as much as I can, but have a feeling it's still not enough and I drink so much water I think I might be becoming aquatic.  I've always drunk at least 2-3L of water a day anyway, as it just felt like the right thing to do.  I now probably drink at least 4L, plus a couple of cups of decaff coffee.  I also used to crave salt before I found out I was sodium deficient, so I think, broken as it may be, my body does it's best to tell me what it needs.  I'm thinking I might have to resort to slow sodium tablets for a while and see if that helps - not keen as I've read they cause nausea.

[Womble]

I have had a call from my GP's office today to arrange a telephone consult to discuss my Ivabradine prescription.  Problem being, the first available appointment is not until next week.  That will be just a few days short of 3 months since it was prescribed by my electro and I still haven't tried it.  

I called my electrophysiologist's office last week to ask them for a interim prescription, while my GP - who refused to issue the prescription because it was off-licence - was off discussing it with the district pharmacist.  His secretary was away, so another secretary took a message and emailed her for me.  In the meantime the district pharmacist had been into my GP's office, on a day my GP wasn't there and told them that there was no need for any fuss, all they had needed to do was call the electro and discuss the prescription directly. (While it is off licence it is rated 'amber' which means GPs can prescribe it on the specific instruction of a specialist, so there was no need for the GP to refuse to issue the prescription.)  In other words, it could all have been sorted out with one simple phone call.  Afaik, the GP was supposed to speak to the electro yesterday, so, hopefully, this telephone consult will be to tell me they are finally going to issue the prescription. Then again, if that was the case, why not just write the prescription and ask the secretary to call and ask me to pick it up?  It could well be that this telephone consult is going to be yet another hoop to jump through. 

With that level of farcical buck passing and lack of ownership/responsibility, I'm not fancying my chances of getting any other meds sorted any time soon.