Orthostatic intolerance

The thing is that there are other illnesses that experience OI but don't have what they describe as PEM or delayed PEM. Moderate to mild exercise in PD and MS does improve some level of fitness if measured carefully. This is what I've been reading in recent studies with no mention of 'warning symptoms'.

 

I’m just entering / experiencing OI hypotension, fainting, big black blobs in my vision on standing or delayed and then start to black out. I also seem to have cold layer on the exterior of my brain.

I’ve had progressive ME since 2006 become more severe in the past 6-7 years. I’ve used a powerchair for mobility 6-10 years.

in June of this year I got covid ending up in A&e just as the Covid test line was improving. I was constantly passing out, legs were just pure jelly and I couldn’t stand up. Husband found me collapsed at bottom of our stairs.

My blood pressure tanked, wild white blood cell count, high temperature, stressed heart with an infection. I had little consciousness. After 48 hours I stabilised.

I now I believe long Covid on top of the ME. Lost my normal tastes plus lack of appetite, weight loss, the cold brain, severe nausea. More and more bed bound.

has anybody had anything good to help with the nausea.

plus I’m on duloxetine, nortriptyline, pregablin, propanol, a statin, dispersive aspirin … But nothing can deal with the whole body excruciating nerve pain … the last few hours have been hell. I’m awaiting a pain clinic consultation in about now a month. I think I’ll scream at them … don’t even know how I’ll cope for that long.

The fainting, black blobs in vision immediately or delayed standing up is just grim and seems to be from laying or sitting.

desperado Sally

 

My daughter takes Ondansetron for nausea, not daily, but if we are driving somewhere or she is doing a bit more than usual. It needs to be prescribed.

Sorry you are having such a tough time

 

I’ve no idea which if the specific ‘terms’ I’ve got

but I do know I have this all the time not just in PEM . Worse when more ill as most of most days I can’t just sit up and a lot of time I have to be horizontal it’s hard to describe why right now. When I was less ill if I talked to someone I had to immediately spot somewhere to perch to sit. Or start moving feet on spot which doesn’t hold for long.

but that when I was more well then ‘whilst moving’ I could be upright but as soon as I stopped I was even worse ‘straight after’ . Exhaustion didn’t help it.

I don’t know whether it if any use but I always noticed it was the bottom one of the two blood pressure readings (can’t remember which way round systolic vs diastolic is) that can get unusually low. Taking whilst sitting for a while even when I was moderate in a gym induction.

I’m not sure mine has dropped as my health has because how do you really compare these readings given I wouldn’t sit in a chair for thirty mins after doing a journey after a work day now. I’m stuck in bed. I could get a machine to see .. but what would I be looking at - seeing if when I feel awful day I have to be horizontal is different to the days I have to sit because a few mins at the stove made me feel funny vs when I’m feeling ok on a good day?

 

I have had ME for 25 years and it really began with Orthostatic Intolerance as the very first symptom. I just woke up with it one day and things deteriorated from there. Of course at the time I didn't know it was "Orthostatic intolerance", as I had never even heard of the term.

Like you I have recently had Covid. It was my fourth bout of covid, and the second nastiest one I have had. My partner found me blacked out in the bathroom. I came round to find the dog staring into my face! No idea how long I was like that. My partner took my blood pressure and it was very low. It is the only strain of Covid that has done this to me.

If you are in very severe pain, you could ask your doctor for a low dose of Tramadol. A good type is Zamadol Melt 50mg. It is a fast release type, and you can cut them in half, which means you can start on a very low dose of 25mg. I have never needed to go above 100mg, so my doctor let's me stay on it. I sometimes also add in paracetamol or naproxen or aspirin.

As for the OI. The best things I have tried are compression stockings which I wear all the time except at night, and Oral Rehydration Solution. I don't find drinking water to be sufficient. I also drink a lot of coffee. This strain of covid made my OI much worse and I had to walk with a stick for a month afterwards, as I felt so unsteady on my feet.

Is the nausea something you have only had since you caught Covid, or something you were struggling with before?
If it is Covid related, I imagine it will eventually pass. My family all lost a lot of weight with this strain of covid as we just couldn't face eating.


The first time I had Covid (I had the very first strain), it took me 3 months to get back to baseline. I literally did nothing at all for 3 months. Subsequent strains did not take as long to get over. So if I were you I would just hunker down and rest. Your body will tell you when you have enough energy to do anything more.

 

I don't know whether there is a direct relationship between blood pressure readings and OI. I've had both [low blood pressure], and even the subjective experience is different.

The only thing I've established for sure is that there's an issue with the way I take readings, and using a different machine doesn't change it. Mine are usually a bit off-balance, with the diastolic (the lower number) rather high compared to the upper. It's never happened when a doctor or nurse has done it, so it's user error.

Not everyone will be as crap at doing it as me, of course, but it's potentially another thing that might skew the results people get.


PS: Edited to add the phrase in brackets, without which the sentence doesn't make sense!

 

So sorry to hear you're in such a bad way, Sally. It sounds horrible.

Only two things to suggest and neither might be all that helpful. First is that taking a lot of different meds can cause nausea, which may feel much worse when you're very unwell to start with. Not that you'd be able to stop taking them without support from your GP, but maybe it's something to consider?

The other is that promethazine works really well for my nausea, but I find it also causes short term muscle aches. It only lasts for about 45 minutes and the anti-nausea effect lasts a long time, so there are times when it's well worth putting up with it. But if you can find something that doesn't have that effect, then so much the better.

I hope the pain eases soon.

 

Thank you so much for your replies.

I’ve always had nausea come and go with the ME. It’s definitely not from medication and gets worse and almost acute with more pain or sometimes just severe bouts of nausea.

I’m just so exhausted of it all … I know we all have had enough. Last night was just horrendous.

it’s just getting help with medication is a battle on it’s own. Probably beyond our life time but one day personalised medication with a test to see what works for an individual.

I usually cope better so hope that part of me re-emerges soon

 

You’ve probably already tried this but I find the clinical pharmacist at my gp good for asking if there are options for things (and they know if there aren’t alternatives) but also whilst it’s still booking ahead a telephone appointment often less of a bunfight to get an appointment (you don’t have to do the ring at 8am) booked ahead and more time to discuss. It might need a gp to then prescribe if they come up with something but at least then you go with a suggestion

 

That sounds a great suggestion. I used to have ideas but these days my brain just doesn’t seem to work or think in the same way as it used to. Common sense ideas are elusive for me now so it’s always good to put ideas out there. Thank you.

 

Thank you so much for your replies.

I’ve always had nausea come and go with the ME. It’s definitely not from medication and gets worse and almost acute withl
more pain or sometimes just severe bouts of nausea.

I’m just so exhausted of it all … I know we all have had enough. Last night was just horrendous. Mentally one of my toughest nights.

 

Dr.Jonathan Edwards reminded me that OI causes low BP so I don't have OI. My BP has been normal my entire M.E journey- 33yrs. The orthostatic impairment started after I had a relapse from taking immune modulators reactivating EBV and HHV6. That was 10yrs post M.E onset. Maybe I have POTS? Not sure.

I've never had my BP tested during delayed PEM.

 

My GP has started taking 3 BP readings in a row. My first reading is high, second reading comes down a little, and third is normal.

 

Watching the last night of the proms tonight with so many standing in the mosh pit and round the high balcony- well they don't have ME or OI.
I remember, years before I had my diagnosis of ME but after the glandular fever, going with a group of friends to the cheap standing around the high balcony, and I had to sit on the floor. Just couldn't stand, even then. The virus was there.

 

I didn't say that.
OI is sometimes caused by low BP (OI is a symptom not a process that causes something).
But my main point was that OI need not have anything to do with BP. In so-called postural orthostatic tachycardia the BP is defined as being normal.

OI is simply not being able to tolerate being upright - of whatever cause.

 

I have POTS and my BP can range quite a bit. Perhaps a more appropriate phrasing would be "In so-called postural orthostatic tachycardia the BP can be normal."

I was diagnosed with OI a couple of years before POTS.

 

POTS is symptomatic orthostatic tachycardia without orthostatic hypotension. I don't think the BP has to be normal range, it could be high but as long as it doesn't drop > 20 mmHg, then it's not OH and so can be considered POTS.

 

Cyclizine was the drug that helped me most with nausea from Chemotherapy and I still use it for my normal ME morning nausea now.

Covid made my BP all over the place. First my BP went very low. I have had low BP for most of my life. Then it began to go high. It's now a bit more 'normal' but every time I get Covid it happens again.

 

The more I think about it, the more I think I’ve had OI (consistent with “POTS” presentation) since atleast my early teenage years, possibly earlier (hard to remember symptoms that far ago) but only developed ME and more severe OI with a COVID infection when I was 17/18.

Is that even possible? I guess it is.