Difficulty breathing + feeling of "lump" in throat

[Mariah]

Thanks for your answer @ArunP ! Haven't been able to find anything that clears this "lump/tightness" thing for me, and it is driving me absolutely insane and making my life miserable. Thankfully, it is better than a week ago, but far from good.

I do believe mine is mostly, or maybe all, neuro-muscular related i.e. spasms, tightness, weakness. It feels like that anyway, that it is the muscles. It hurts and "tightens" a lot in my throat. Of course my chest and abdominal muscles also become severly fatigued from this type of breathing. I try and breath a lot through my nose as you describe, and it alleviates it a little actually. I also sometimes have trouble swallowing, but haven't noticed any connection to the breathing thing. It does not worsen at the same time as I have noticed anyway.

I have tried two different medications for asthma which did nothing, so my problem is not there. I am actually on clonazepam daily now because I read that it could help "all" of my ME symptoms, but unfortunately did nothing for me. I am weening off it very slowly now as I don't want to be on a medication that doesn't work. I am already on enough drugs ;-). Will ask my M.E. doctor if I can try a muscle relaxant next time I see him, to see if that helps, or if he has any other suggestions.

Please do keep me updated if they find anything! As I have said, I have had this off and on since I got ME almost 9 years ago. I really don't want to go through more specialist appointments if I can avoid them, as I feel I have seen every one of them multiple times.

 

[ArunP]

Good choice with the clonazepam. If it doesn't help stop it. And you're doing it right, weaning it off slowly. If I may ask what dosage wwer you on? Even if it helps there are issues of tolerance building fast and physical dependence especially in us that we use it to treat physical symptoms. Ive built up quite a tolerance in just 2-3 months of use and am trying to come off It myself. And try and use only when I really need it. But thst plan is not really working all that great.

I think my swallowing issue is a muscular, autonomic dysfunction and allergic issue. But the lump I think is more allergic/autoimmune. Especially since it clears up temporarily when I inhale steam. But doesn't work all the time. So, have you tried inhaling steam? Does it help with the lump? This I think might give us clues as to whether there is an allergic component to it.

Magnesium supplements help a lot with muscle issues. That's the only supplement that helps. I'm trying a lot of new supplements (mostly for brain excitotoxicity, supplements like Taurine, NAC, NAG) in the next few weeks. I'll let you know if anyhting helps.

Have you tried Low dose Naltrexone? If yes, how long have you tried it for and at what dosage? It helped me immensely until I went through a bad treatment and became very sensitive to a lot of drugs and triggers.

 

[Mariah]

@ArunP When I was at my highest dosage, I took 0,5 mg clonazepam in the morning, and 1,5 mg at night. I`m down to 0,5 mg in the morning and 0,5 mg at night now, cutting down by just 1/8 of a tablet every week. So far it has worked great and not given me any withdrawal symptoms. I worked my way up to that dosage as I know you build tolerance quite fast on these drugs, but didn`t seem to help either way. I really understand needing to use them if they actually work for you, and I believe any means to symptom relief is justified in our situation.

I have not tried inhaling steam, but I`ll try it later this evening just to be sure. I`m pretty sure that isn`t the issue with me though, since I actually can feel the muscle pain from the tightness/lump/spasm-thingy down there. I just read through this thread, and someone mentioned something calles paradoxical vocal fold movement/motion. I looked it up, and it kinda resembles that, so I may be looking in to having that checked out, so may have to see an ENT after all. It says that both neurological disease (M.E) and reflux can be a culprit of this, and I have both. Allthough my reflux is very much under control I feel, so I don`t know if that is what would cause it in my case. I will increase my medicine for this just in case.

I have tried LDN yes. Unfortunately didn`t work. I tried it for about half a year. Don`t remember the dosage, but I went as high as they recommended. I feel I have tried everything i.e. LDN, Rituxan, antibiotics, antivirals and so on, and nothing seems to work. I only get worse with time. Hoping for some relief anytime soon!

 

[Mariah]

Wondering if botox injections could work if this indeed is a neuro-muscular thing with the muscles not working properly/not opening and closing when they should. I've read a lot about this globus phenomenon lately, and botox always seems to come up with the muscular reasons. Also wondering if my reflux could play a part, this can also affect nerves, muscles etc. I do have esophageal spasms off and on, but have had them for a long time without this corresponding breathing problems and globus. The latter won't seem to go away this time, which is giving me full anxiety and no quality of life, feeling like I am choking all the time. Everytime it seems to get better, it stays for a couple of days and then worsens again. My reflux has been acting up extremely much lately though, despite doubling my Nexium, so it could have something to do with that. If I am talking for an amount of time, laughing etc. it can create muscle pain in the throat, and I am short of breath all the time. There definetely is a muscular "closure" in my throat. Gah, a month till I see my ME doctor again, and then even more possible wait to se an ENT who will actually take me seriously. Difficult to wait with this amount of anxiety.

 

[ArunP]

@Mariah I dont think an ENT will help you. I saw one last week and he asked me to see a psychologist.

Earlier that week I saw a neruologist too who kind of said the same thing. I had an mri which didn't show anyhting. The radiologist thought I had global hystericus anxiety.

If you suspect a neuromuscular problem it's best you see a movement disorder specialist and get your self evaluated. Even then there is quite a possibility the doctor wouldn't come up with much. Our condition is such. I have reduced stress to my throat area. Less talking and eating easy to swallow stuff and making small changes. It helps if I eat standing, etc. I'm just really resting this out. Atleast I don't want this to get any worse.

So my advice to you would be to do as much as possible to give yourself rest and maybe try to find out what is causing it. If it is dsytonic or spasm related then botox will help.

If it may help, I have eyelid dsytonia. Also suspect chest wall dsytonia (I dont know what to call the throbbing chest muscle feeling) and a minor generalized dsytonia. Imy dsytonias respond to alcohol temporarily. Same way clonazepam helps me.

Take care,
Arun

 

[Mariah]

@ArunP I have read a lot about globus lately and what causes it and find that some do get help and suggestions, but it's the matter of finding the right ENT who will help you and also recognizes ME AND believe you when you say it is not caused by anxiety. Not easy. It's the ENTs who are supposed to know about this, or possibly neurologists if it's neuropathy. Thankfully I know a great neurologist who knows a lot about ME, but I do wanna see an ENT first. But have to go through my ME doctor first as I want to make sure I see a recommended one, and one that will not take offense to me making suggestions on what it could be hehe...doctors and their egos! I find you often have to push them, and then they will come up with suggestions.

Will try to rest as much as possible, even though it's hard with this anxiety on top of it, and you do the same! I don't have that much of a problem swallowing, only breathing, and eating standing is unfortunately out of the question for me as I have orthostatic intolerance which only doubles the heavy breathing. Have to lie down a lot which is not good for mye GERD.

Take care the same!

 

[ArunP]

@Mariah

I suggested a movement disorder specialist since you spoke of botox. If you can find an understanding and helpful doctor. To see him/her would be the best thing to do. Get a recommendation from your ME doctor.

I think I spoke from my experiences disregarding your position. But you live in a different part of the world and have a more ME aware medical community. So, I think it's best to get help where you can.. But make sure you see the best available ENT specialist.

Regards,
Arun.

 

[Mariah]

@ArunP Have to admit I have never heard of a movement disorder specialist. I will ask my ME doctor about this also. The great neurologist I know of does botox, but from what I read, here, a knowledgeable ENT also should be able to do this. But finding one that is willing to try will be the biggest challenge. Many doctors are conservative vis-a-vis treatments that are more "severe" than a pill.

You are right, I am in Norway and I do think, despite everything, I am lucky to be here when getting this hellish disease. The tides are slowly turning, and in the last 5 years or so, I've actually gotten a lot of help from tests to trial treatments. Many are of course clueless still, but hopefully this will change for the whole world soon. Hope you are getting at least the minimum of care that you need. And as I said, I have had this throat thing before and it has disappeared to almost not detectable many times before, just a little air hunger and the need for deep breaths now and then left. Hoping it will happen for both you and me!

Take care .

 

[daisybell]

@Mariah I think an ENT is a good idea... do you know if they have clinics with ENT and Speech Therapy together?
It sounds like a combined assessment would be the best way forward... so if I was in your shoes, I would see if I could get a referral to a joint clinic - probably called something like a 'voice clinic' but it should also deal with the sorts of problems you're having with your voice box going into spasm. I wouldn't rush into Botox...... there are other things to try first. A good SLT should be able to help once you have the right diagnosis.

 

[Mariah]

Thank you for your input @daisybell , I believe it was you that tipped me off to the paradoxical vocal cord diagnosis . I've read and researched a bit more about it, and as I did, I got the impression that this was a diagnosis with more of an episodic symptom display, whilst mine are constant (allthough with better and worse periods). I guess my symptoms fits somewhat better with cricopharyngeal spasms ("globus pharyngis"), allthough that is not "supposed" to give pain (allthough I read of some with muscle pain like mine) and is also not supposed to interfere with speach endurance. It is also more closely related to feeling like you have a problem swallowing even though I've read many reports of breathing problems also. My main problem though is the trouble breathing and the choking feeling. Swallowing is affected sometimes, but far from my biggest problem, and the voice thing is also not my biggest problem even though I struggle talking too long, get muscle pain in my throat, and get a little hoarse after doing so.

I do have GERD, esophageal spasms, autoimmune gastritis and an hiatus hernia. I feel the reflux is pretty much totally not under control lately and I know it can cause a whole host of problems with the muscles and nerves in your throat, pretty much getting everything to spasm. But there must be some component of the ME with this also I guess, as a lot of people in a thread I made in a Norwegian forum replied with the exact same thing, allthough not as severe as mine. I read it can be related to neuropathy and LPR also.

A good ENT will be my first choice . Don't know if we have a voice clinic in my area (I would guess no, maybe in one of the hospitals), but since the voice isn't THE main thing I guess a recommended ENT will do the initial tests.

 

[daisybell]

@Mariah that sounds sensible. A knowledgeable SLT will also be able to do a modified barium swallow and provide you with advice... in an ideal world, you would have ENT, SLT and gastroenterologist all working together......

 

[Mariah]

@daisybell Thank you! I'll write it down as my foggy head tends to forget ;-). That would be super ideal! But I've found one of the hardest things in the health care system is getting different specialists to actually communicate with each other. But I'm allowed to hope they actually will ;-).

 

[Belgiangirl]

Hello, I'm new here but I just wanted to start a thread about this. Seems it is not necessary. I try to structure my post since for fatigued people it is quiet annoying to go to blocks of text.
I also got seperate "breathing/throat problems" (actually but of one I am sure it is asthma and since my GP was easy to give me an asthma inhaler when I stated I had this, this problem I can solve).

1) you know that you're breathing and everything is all right but all the sudden you get a strange sensation of air hunger. It feels like the air is not passing all along in the lungs, while you're sure it does and all your breating muscles and everything work fine.
I have this most of the time when laying in bed. I also discussed it here with another person linking it too POTS.
This night I had this disastrous and then I noted I really need to use my "support breathing muscles" (which are more closely to the shoulder and neck - normally your diaphragma does all the work).
I then have to breath in like "two steps" while only with hard work and curling my body in all kinds of ways and being quiet anxious (if so would see me making that spastic moves they would think I'm totally mad) to get the air into my lungs, while you know it goes in your lungs anyway because you can see that everything moves up and everything. But still ... you don't feel like you can breathe. :-/ And only after the "struggle for breath" and do all kinds of movements with your support breathing muscles you succeed in getting air "deep down" and feeling "relieved" and that your air problem is solved. As long as this is not solved u're completely restless and laying there completely spastic trying to catch these breath.
http://forums.phoenixrising.me/inde...revent-night-terrors.51301/page-2#post-849794

2) Feeling of sth in my throat!! When I had to go to the nose/throat/ear doctor of course I did not feel it and he didn't notice anything ... Today I had this for the upper most part of the day and even now.
But as I remember well I also suffered from it extremely last year (for the first time of my life) during the spring.
So I am more convinced it must be sth environmental. Frustrating about it, is that it doesn't seems to go along with the fatigue (unlike n°3). So while I'm feelling like i have enough energy to do anything, as soon as I would ignore this and try to do anything I get out of breath... because indeed when I do efforts i feel it hindering my breath.
I also am afraid of going somewhere cause i obviously don't feel relaxed and feel like people can hear me breathing/see me gasp for air - or what happens when ur in the car driving and it gets worse? :-/
I also have a lot of difficulties to localise the place exactly because I feel it is about a certain length down my throat - so not specified to like a spot or some centimeters. It would merely feel like mucus which you scratch your throat and it is gone... except it stays.

3) when i really get too exhausted and have stretched my body beyond limits feeling that i'm almost killing myself by staying awake (sometimes you have obligations) i get a pressure on my throat feeling. It is very hard to describe what it is, the feeling is more generalised and also it seems to be in the whole airpipe/upperchest and its just a feeling you cant handle it anymore. My breathing might become very wheezing and shallow then. I'm afraid it might be like dying ... I take lormetezepam then to make sure my body can sleep quickly because the stress caused by this (and because in this periods i am very stressed of course otherwise i wouldn't stretch my body to limits, it will mean urgencies or obligations which i must apply while i know i am not able to) won't make me get a sleep and eventually might kill me (or feels like that). When I'm in this state I obviously don't need to explain that I got lots of cardiovascular issues.



Questions/hypotheses

- Allergy related / asthma / environmental triggered
- Related to muscles --> often posture related. Think about Thoracic Outlet syndrome? --> Physiology therapist
People with skeletal problems (scoliosis, X legs, problematic feet) are more prone to this.
- GERD (reflux and other stuff)
- stress / hyperventilation / imagination / conditioning
- lymph node reactions
- thyroid issues
- vocal issues
- thickened mucus for some reason (allergy related again)?


In my case:
- since I live alone and am not a singer nor talker, vocally is safe to rule out I guess?
- For GERD I take protonpompinhibitors.
- Hyperventilation doctors always like to test me for: never got confirmed.
- Thyroid issues the same: 1 x hyperthyreoidie at 18, could never get replicated!!! It is the 1 thing that every doctor wants to test me for cause I seem to fit for all the symtpoms (having a bmi of 16 - always slightly feverish - givin impression like a rabit on duracell batteries - with hearth rhytm problems and sleep distrubancies).

 

[Belgiangirl]

Hello, I'm new here but I just wanted to start a thread about this. Seems it is not necessary. I try to structure my post since for fatigued people it is quiet annoying to go to blocks of text.
I also got seperate "breathing/throat problems" (actually but of one I am sure it is asthma and since my GP was easy to give me an asthma inhaler when I stated I had this, this problem I can solve).

1) you know that you're breathing and everything is all right but all the sudden you get a strange sensation of air hunger. It feels like the air is not passing all along in the lungs, while you're sure it does and all your breating muscles and everything work fine.
I have this most of the time when laying in bed. I also discussed it here with another person linking it too POTS.
This night I had this disastrous and then I noted I really need to use my "support breathing muscles" (which are more closely to the shoulder and neck - normally your diaphragma does all the work).
I then have to breath in like "two steps" while only with hard work and curling my body in all kinds of ways and being quiet anxious (if so would see me making that spastic moves they would think I'm totally mad) to get the air into my lungs, while you know it goes in your lungs anyway because you can see that everything moves up and everything. But still ... you don't feel like you can breathe. :-/ And only after the "struggle for breath" and do all kinds of movements with your support breathing muscles you succeed in getting air "deep down" and feeling "relieved" and that your air problem is solved. As long as this is not solved u're completely restless and laying there completely spastic trying to catch these breath.
http://forums.phoenixrising.me/inde...revent-night-terrors.51301/page-2#post-849794

2) Feeling of sth in my throat!! When I had to go to the nose/throat/ear doctor of course I did not feel it and he didn't notice anything ... Today I had this for the upper most part of the day and even now.
But as I remember well I also suffered from it extremely last year (for the first time of my life) during the spring.
So I am more convinced it must be sth environmental. Frustrating about it, is that it doesn't seems to go along with the fatigue (unlike n°3). So while I'm feelling like i have enough energy to do anything, as soon as I would ignore this and try to do anything I get out of breath... because indeed when I do efforts i feel it hindering my breath.
I also am afraid of going somewhere cause i obviously don't feel relaxed and feel like people can hear me breathing/see me gasp for air - or what happens when ur in the car driving and it gets worse? :-/
I also have a lot of difficulties to localise the place exactly because I feel it is about a certain length down my throat - so not specified to like a spot or some centimeters. It would merely feel like mucus which you scratch your throat and it is gone... except it stays.

3) when i really get too exhausted and have stretched my body beyond limits feeling that i'm almost killing myself by staying awake (sometimes you have obligations) i get a pressure on my throat feeling. It is very hard to describe what it is, the feeling is more generalised and also it seems to be in the whole airpipe/upperchest and its just a feeling you cant handle it anymore. My breathing might become very wheezing and shallow then. I'm afraid it might be like dying ... I take lormetezepam then to make sure my body can sleep quickly because the stress caused by this (and because in this periods i am very stressed of course otherwise i wouldn't stretch my body to limits, it will mean urgencies or obligations which i must apply while i know i am not able to) won't make me get a sleep and eventually might kill me (or feels like that). When I'm in this state I obviously don't need to explain that I got lots of cardiovascular issues.



Questions/hypotheses

- Allergy related / asthma / environmental triggered
- Related to muscles --> often posture related. Think about Thoracic Outlet syndrome? --> physiotherapy?
People with skeletal problems (scoliosis, X legs, problematic feet) are more prone to this.
I have known people without CFS with the problem of the "globus feeling", helped by a physiotherapist
- GERD (reflux and other stuff)
- stress / hyperventilation / imagination / conditioning
- lymph node reactions
- thyroid issues
- vocal issues
- thickened mucus for some reason (allergy related again)?


In my case:
- since I live alone and am not a singer nor talker, vocally is safe to rule out I guess?
- For GERD I take protonpompinhibitors.
- Hyperventilation doctors always like to test me for: never got confirmed.
- Thyroid issues the same: 1 x hyperthyreoidie at 18, could never get replicated!!! It is the 1 thing that every doctor wants to test me for cause I seem to fit for all the symtpoms (having a bmi of 16 - always slightly feverish - givin impression like a rabit on duracell batteries - with hearth rhytm problems and sleep distrubancies).

 

[deleder2k]

What is your heart rate @Belgiangirl? I thought I had asthma because of fast breathing, hunger for air in addition to that I felt something in my throat. Turned out that my heart rate increases after caffeine/activity/PEM, and that the issues with my throat were just flu like ME symptoms.
Asthma inhalers can increase heart rate, so beware of that. You should talk to your doctor about it. Perhaps monitor your heart rate. I use beta blockers. 40 mg propranolol. Gets my HR down from 90-100 to around 70.

 

[Belgiangirl]

What is your heart rate @Belgiangirl? I thought I had asthma because of fast breathing, hunger for air in addition to that I felt something in my throat. Turned out that my heart rate increases after caffeine/activity/PEM, and that the issues with my throat were just flu like ME symptoms.
Asthma inhalers can increase heart rate, so beware of that. You should talk to your doctor about it. Perhaps monitor your heart rate. I use beta blockers. 40 mg propranolol. Gets my HR down from 90-100 to around 70.

It used to be very high and it certainlly climbs a lot when I'm tired. But when I'm okay and relaxed it may be low unitl 40-50, always shocking cardiologists and their staff ... while i have no condition at all. :-/
But since I'm tired most of the time and get heart arythmias, palpitations and stuff then, i take propanolol also those days (also 40 mg). Have gotten replacement drugs from my doctor 2 that would be working all day since propanolol isnt considered exactly state of the art drug anymore. But have to ask it back every time ... i think i would have died without it.

I sometimes was unsure if sth was asthma or not, until I got a very real asthma attack which was undistinguishable. It is like being described: your airpipe gets thinner and it is especially hard to breath out, which slows down the whole proces... while you just need air and want to breath in.
A real attack is something realy very specific one can hardly miss. Though this is already a more severe attack, there are other symptoms and i can also fix them with the inhaler, after which i can sleep although it is indeed a thing which arouses.

 

[Mariah]

Good summation @Belgiangirl ! Mine is definitely not related to heart rate, the globus feeling has nothing to do with that. I also take beta blockers and I do not have fast breathing. Feeling a bit better with the globus atm., not struggling to breathe as much, but the feeling of a lump in my throath is always there. I am quite certain it is neuro muscular in origin.

 

[Mariesak]

Mariah, Wondering if you’ve found any relief from this? I have been having a feeling of a lump/tightening in my throat for nearly a year. I saw an ENT recently who told me it’s viral cobblestone in the back of my throat caused by chronic EBV. He didn’t recommend any treatment. He just said that if it gets worse I should take a high dose of steroids for a short time and it should clear up. It tends to get worse later in the day and/or when I’m stressed.

 

[Mariah]

Hi @Mariesak , I do experience relief off and on. Part of it undoubtedly is because I get used to, and forget, it and part of it because it fluctuates. For me it is not cobblestone throat, I have been checked at the ENT a few times. I believe it is neuro-muscular in origin at has to do with the tiny muscles in our throat and chest which we have no control over. I have found some relief with musclerelaxants, but don`t wanna take them too often. I would try the virus approach first, that is if you can tolerate the medication. Hope you find relief soon!

 

[Mariesak]

Hi @Mariesak , I do experience relief off and on. Part of it undoubtedly is because I get used to, and forget, it and part of it because it fluctuates. For me it is not cobblestone throat, I have been checked at the ENT a few times. I believe it is neuro-muscular in origin at has to do with the tiny muscles in our throat and chest which we have no control over. I have found some relief with musclerelaxants, but don`t wanna take them too often. I would try the virus approach first, that is if you can tolerate the medication. Hope you find relief soon!

Thanks! I don’t think it’s just cobblestone throat in my case. There is also a feeling of tightening and a lump that’s always there, but the severity varies. Also have dry mouth, sometimes burning too. I’ve been on Valtrex for nearly 6 months. Slowly adding in monolaurin. You’re right, antivirals are hellish!