Globus sensation and PMR/GCA

[Gaijin]

I have had Globus sensation since I was diagnosed with PMR 13 months ago.It gets so bad at times that I can hardly sleep as I wake up choking. It keeps me from falling asleep, too. I try to do the body scan meditation , start at top of my head and when I get to my throat , I get stuck as I cant cough up the lump or swallow.😰 i have done a treatment cycle with a ppi as the ENT I saw inicially for globus sensation and post nasal drip said it was due to acid reflux but it didn't help at all.

I'm wondering if it has any connection to Prednisone or GCA? For the last couple of months, I've had a very tender spot on my right temple and headaches that I wake up with, that come and go. These symptoms are not nearly enough to warrant going to the ER, they'd probably send me home and tell me I'm just being paranoid, but if this globus thing is related, it's got worse lately, maybe I'd be taken more seriously.

I did get my foot checked out, they x rayed and found no fractures ..they told me it could be nerve pain radiated from my lower back..or piriformis syndrome. Guess I should have written this last bit on my original thread on the subject.

[SheffieldJane]

There is an old post of mine under Oesophageal Spasm where this on going sensation became painful and alarming. I was taken away in an Ambulance and had heart tests. No explanation, once they'd discounted the heart.

In the run up to this attack I had been experiencing the symptom you describe. As if I had swallowed a stone and it was stuck. I think it is part of the overall swelling of the neck that you get with Pred. It's horrible, over the counter heartburn remedies and even Paracetamol seem to help. I still get a mild version sometimes. People advised sips of water which helped too. I chew carefully too. I am on much less Pred now. I stopped Omeprazole which may have been a factor.

More worrying is a sensation of stopping breathing when I fall asleep sitting up, some days worse than others. Could be sleep Apnoea. But I think it is associated with Pred and a fattened neck.

I do the mindfulness body scan when I remember. It's usually effective. I tend to panic with these weird symptoms. I don't trust my body, everything feels sinister. I am sure you are much more sensible!

[Hidden in reply to SheffieldJane]

I sometimes get the stopped breathing wake up call during the night sleep. Ticker seems out of synch. I do have Atrial Fib. though. My neck is a lot thicker & less flexible with the pred. think you are right about that.

[Gaijin in reply to Hidden]

Thicker and less flexible neck...I hadn't thought of that, but you're right.. That's how it feels..I had thought maybe it is due to the muscles envolved in clearing one's throat which are weakened by PMR..

[SheffieldJane in reply to Hidden]

Just read that sleep Apnoea is another gift from Pred. That may stay on after PMR has gone and we are off Pred. It causes swollen tongue and tonsils and a narrowing of the throat cavity. This can be permanent. Awake with a stuffed up nose that has made the breathless panic worse. I have a fan blowing on my face and my pillows propping me up. This has helped. Blocked nose is becoming a "soon as I am in bed "symptom. Joys!

[Hidden in reply to SheffieldJane]

Joys indeed. Burning sensation in sinuses are another one. Like after eating something very cold. Don't like warm wine though!!

[Gaijin in reply to SheffieldJane]

Wow, ..that must be it then, this globus sensation , stuffy nose and post nasal drip have been with me since the beginning of pred treatment so it makes perfect sense.

"This can be permanent"!! Hope not😵

[BonnyQuine in reply to SheffieldJane]

Me = GCA, improving on 9mg pred. I also identify w stuffy nose and post nasal drip. Semi-permanent. Usually gets worse when I lie down, and lessens when upright. Have to lie down to sleep, unfortunately. Cold draughts seem to make it worse. Associated patch of irritation in upper chest causes occasional cough. And I seem to choke more often than in the past. As you say - joys! But no lump in my case, except after choking.

[Gaijin in reply to SheffieldJane]

No, not sensible at all😁

I have no faith in the GP at all...she should have read up on PMR/ GCA when I first went to see her, when I had been diagnosed ..she hasn't a clue, though, I can tell. I asked her for a referral to the ophthalmologist but she said no need, that she would have a look herself.shecsaid the irritation was due to pollution, which is very high in Madrid.

It's not her, its the system, here. So my plan for if I ever think I need to be tested for GCA, is to go to the ER during the week and during my rheumi's out patient schedule so that if I go in, they would call him to come and check me out.

I love the way you put it: "I don't trust my body"..hahaha...I don't either!

[Missus835 in reply to SheffieldJane]

An old post, but I found it this morning. Those esoph. spasms are wicked painful. I almost cannot stand the pain, which has occasionally brought me to tears (and I can take a lot of pain).

I'm scheduled for an endoscopy in June 2023 and I'm pretty sure it will reveal little more than what we already know, but I do have a very tender spot at the bottom right of my breast bone. Taking two 20 mg. Rabeprazole at this time (12 hrs apart). It seems to have helped, maybe. Also someone recommended DGL dissolving on the pallet, which seems to work also. I haven't wakened unable to breathe - yet. I also feel that my swollen neck and face contribute to my inability to swallow well. Always this ruddy lump in my throat and food does get caught (little pieces) which I can actually cough up. Comes flying out. LOL.

[SheffieldJane in reply to Missus835]

Hello, gosh 5 years ago. I can tell you that the oesophageal spasms don’t happen to me anymore and neither does the scary “ goldfish gasping for air”. I have a new set of symptoms now, but none as frightening as those two.🙏

[Missus835 in reply to SheffieldJane]

The spasms are extremely frightening, because you're really never quite sure that's what it is.

[SheffieldJane]

PS mention your temple pain to the GP. The headaches I get don't form a pattern like that. X

[Missus835 in reply to SheffieldJane]

I just mentioned it to my Rheumatologist, who said we will keep an eye on it. Ugh.

[PMRpro Ambassador]

Have you had sleep studies done? Pred can lead to fat deposits around the neck (don't we know that) and also to relaxation of the throat muscles leading to the windpipe being obstructed during sleep which is what wakes you suddenly - and sometime cpap for sleep apnea can help. There are a few people on the forum who had similar problems - and cpap has worked a minor miracle.

[Gaijin]

A few years years ago, a had a sleep study done but it was inconclusive ..I didn't sleep a wink ..it was done in the hospital with her night.They wanted to repeat the test with a portable machine like a halter but I never followed through.

Thank you for that info...Im going to ask for a study or just try a cpac..

[PMRpro Ambassador in reply to Gaijin]

It isn't easy to get hold of a cpap machine!

[SheffieldJane in reply to Gaijin]

IdasMum is a convert. ( to the space helmet thing). As for being stuck with the symptom, I take heart from the fact that my Graves Disease ( Thyrotoxicosis) presented with exopthalmic goitre ( prominent eyes) and they told me those would always be with me - think Marty Feldman - my eyes, incidentally my best feature - went completely back to normal. So let's hope this swollen tissue goes back to normal too. Why can't we get a disease that makes us look ethereal and beautiful? It always has to be moon, face, buffalo hump, weight gain etc. 😡

[Gaijin]

I saw some little ones they advertise..they look a lot less cumbersome, maybe they are a gimmick . Guess I'll probably have to go through all the normal red tape for one😕

[Gaijin]

PMRPro, I don't think I understood the first time I read your response...I think you were saying that even though one doesn't have sleep apnea, a CPAP can help the windpipe obstruction caused by Prednisone? In which case I'll look at all the options for a CPAP or similar device and let you all know..I saw an advert about a small device that is used in lieu of a CPAP machine...maybe I just dreamed it up!

[PMRpro Ambassador in reply to Gaijin]

I think I'm suggesting that maybe it isn't just globus what's'it. I think you should have a sleep study done again...

[Gaijin in reply to PMRpro]

Ohh..yes, now I understand ..and I will have to.. those cpap machines will have to be prescribed...just looked at them and they are quite expensive...the globus sensation is with me all day and night...constant.really annoying..I'll get a study done .

[SheffieldJane]

Keep us posted Gaijin! I will be watching with real interest.

Oh dear - pollution.🙄

[Gaijin]

I will ..although I'm getting lazier and lazier about seeing any doctors ( I just attribute every symptom I have to pred side effects) .But I will get a sleep study done .

[SheffieldJane]

I had a scary night last night. I couldn't breathe through my nose or blow it and a couple of times I awoke with a start, not breathing at all. In the end, I propped myself up on pillows and had a fan blowing into my face. The next time I woke up my nose was clear. I took Pred in the early hours, after all that, to try and get a better day. Oddly I slept ok and woke feeling better than usual.

I read up on sleep Apnoea and apparently, singing, yoga exercises, and playing the Didgeridoo can strengthen the throats muscles and obviate the necessity for the CPAP. So that's my souvenir from Australia sorted and perhaps I should join a choir. I used to be able to sing.

[Gaijin in reply to SheffieldJane]

Your night sounds very familiar, how scary! I choose the Didgeridoo, have to figure out what it is first😂