Excruciating pain when breathing.

[psychologygeek]

Hi all, I'm new here looking for some support. In Oct/Nov I had something that looked like sinusitis, took a whole bunch of meds and by New Year I was left with crippling and excruciatingly painful dryness and burning sensation in my nose, throat, ears and sinuses which radiates to my upper teeth and tongue. Every breath hurts and cause pain, I can't eat, I cant't sleep, I look like a ghost of my former self. I also seem to have lost all my saliva. My mouth is dry, I can't sleep. I have problems swallowing. I've been off work for about a month (only got 3 months before I stop being paid) . I'm not really sure how long can I carry on like this. I've made some arrangements such as bank transfers and last night I wrote goodbye letters to mum and my partner. I feel like I''m loosing grip on life and doctors can't help me. Everything medical is so slow here in the UK and I genuinely feel like I'm dying on the inside.

 

[Karmitkurmit]

Hello Psychologygeek, and welcome to the SF family.

I'm sorry you're having to go through this. What have the docs said? I've not heard of this condition before, I tend to suffer with tonsillitis regularly but that's about it. Have you spoken to your company about what's going on? I know some employers have private healthcare they can use if one of their staff requires it, and they may at least be able to speed up the process or offer you some sort of long term support.

I know the NHS can be slow but I'm surprised they haven't at least given you an idea of what they can do. Have you ever suffered with anything like this before? Please don't give up, you've come to a great place for support and compassion and although I'm not a lot of use, there are some very knowledgeable people on here that may be able to give you some advice. I know when I can't swallow with tonsillitis, Dunns River Nurishment milkshakes help me temporarily and give me at least some nutrition. Obviously speak to your GP first, but it helps to keep my strength up until I can eat properly again.

I hope you can get this sorted, and keep posting here, there and everywhere if it helps you. We're all here for you and listening. {{Hedgehugs}}

 

[Ash600]

It seems that you could be suffering from chronic sinusitis where long term treatment may be required. Obviously this requires referall to an ENT doc for assessment following which treatment may involve antibiotics, decongestants and steroid nasal sprays. Medical treatment will normally clear things up but in a few cases local surgery can be an option.

In the meantime, irrigation with a saline solution can sometimes help in relieving symptoms. Recommended products would be Sterimar.
I don't know what meds you have already tried, but I would suggest to AVOID topical decongestants such as Otrivine as prolonged use (more than 7 continuos days) can cause rebound congestion and hence make matters worse.

I do hope that things will speed up for you by being seen by the NHS and that you will be able to receive effective treatment.

 

[may71]

Sorry to hear that you are going through this.

It's terrible that a case of sinusitis could have transformed into something like this.

What Ash said about saline solution and seeing an ENT doc sounds good, but I wonder why your doctor would not have recommended this already.

I'd recommend trying out traditional Chinese herbal medicine. Acupuncture might possibly help a bit as well. Acmac.net has a list of community clinics in the UK. Usually they are pretty cheap, about 15 to 25 pounds per visit. They might be able to prescribe what is called a patent medicine (a pre-made herbal forumal, usually in pill form).

I could try to make some dietary recommendations, if you're interested, but it's probably best to let a professional do that.

In any case, I hope that something can help soon.

 

[psychologygeek]

Hi everyone, thank you for your warm words. To answer the sinusitis query - I already had all treatments under the sun and to me it seems as though these treatments precisely may have contributed to my current state. I'm unable to produce any mucus, even when outside in the cold meaning that every breath brings agony. I lost sneezing and other reflexes in my nose as well as the ability to produce secretions. I sleep 2 hours per night on average. I've seen about 4 ENTs until now without much luck.

I just don't know how long I can go on like that. I wrote letters to mum and my partner, I started making arrangements and planning where to end my life so Dominik doesn't find me and I don't cause him distress. When I was on a plane a month ago I spend all landing hoping it would crash.

 

[may71]

thank you for your warm words

You're welcome!

I've seen about 4 ENTs until now without much luck

That's terrible. It certainly sounds like you've done about all you can do as far as conventional treatment goes.

I already had all treatments under the sun and to me it seems as though these treatments precisely may have contributed to my current state

Is saline one of the treatments that you tried that made things worse?

I know that I already mentioned this, but I'd urge to try acupuncture and traditional Chinese herbal medicine. Even if you've tried it already without success, I'd recommend trying again with another more qualified practitioner. Acupuncture has been endorsed by the World Health Organization for treating a wide variety of conditions. Certainly, in the interests of leaving no stone unturned, it sounds like it's worth a try.

Eating apple sauce and dairy products that are lightly cooked and served warm might help, but admittedly this just my amateur 2 cents.

Ok, I'm always going on about Chinese medicine and all too often giving unsolicited advice, so I promise to shut up about Chinese medicine from now on unless want me to say more.

When I was on a plane a month ago I spend all landing hoping it would crash

That's horrible. Were things going well before the sinusitis? It's such a damned thing for medical treatment to be the thing that has put you in this position.

 

[psychologygeek]

Hi May, yes saline makes it worse, I don't know what is going on inside my face, but it feels like sandpaper, hurts like hell is dry as a desert and anything sends it into hellish pain.I'm just back from the dentist because my gums and teeth as well as tongue itch and hurt (I also lost almost all my saliva)and of course there is nothing wrong with my teeth. I don;t know how long can I go on like that. Honestly, no idea. Booked osteopath for the end of the week, I'll investigate acupuncture and chinese medicine next.

 

[may71]

I'll investigate acupuncture and Chinese medicine next

The acmac.net clinics are community clinics, meaning that they usually treat several people in one room. This is what makes it less expensive. I'm not sure how many of the acmac clinics will have patent medicines (or customized formulas) available, so you might want to ask in advance.

Acupuncture has a low/almost no potential to "back fire", but misprescribed herbs can be counterproductive. Your illness doesn't sound like it would be necessarily complex to treat with Chinese herbs, it's just that you can ill-afford a treatment that makes you feel worse. You might want to look up acupuncture schools in your area and see if you can get an appointment with one of the faculty to get an herbal prescription.

Seeing a faculty member privately could be expensive. I'm not sure what's in your budget. In some cases, acupuncture schools have teaching clinics in which faculty will treat you for either a low fee or no fee, but students will watch during the appointment.

Teaching clinics can be found by searching for "acupuncture schools in [your area]".

If you happen to be near London, I've got a list of teaching clinics there.

I hope all goes well with your osteopath!

 

[psychologygeek]

Thank you, unfortunately I'm up north. I saw an ENT yesterday, he's sending me for some more tests and a CT scan which is good, we shall see what will come out of that. I booked an Osteopath for Friday, maybe that will help. As for treatment... I'm not sure. The way I feel, I don't think I can afford getting treatment wrong at the moment. Any additional day of pain would make me feel like I want to cease existing. I think.

 

[may71]

The way I feel, I don't think I can afford getting treatment wrong at the moment. Any additional day of pain would make me feel like I want to cease existing. I think

It might be best then to hold off on trying Chinese herbal medicine. I'd say it's probably much less likely to produce adverse side effects than any prescription that you would get from a doctor, but it still might be better to wait.

There's really no medicine that anyone could give you that would have zero, or even near zero potential to make things worse.

Because of that, I'd recommend booking acupuncture sooner rather than later (I know, I'm really gung-ho about acupuncture, but there's a reason for that).

Dietary modifications might be very good too, because the effects of foods are usually pretty gentle, and you've got to eat something no matter what.

 

[psychologygeek]

I have acupuncture booked for tomorrow with someone in the local health centre.
I had another bad day of pain. Days like this I feel like I’m going to die. Not seeing another summer, riding a bike, or growing old withmy partner makes me sad. I worry what my suicide would do to them, but I wrote goodbye letters and I’m preparer to do it if I don’t get relief.

 

[may71]

Not seeing another summer, riding a bike, or growing old withmy partner makes me sad

Please don't give up hope yet. Something may help.

 

[DrownedFishOnFire]

Since its all dry thing you mentioned do you have humidifiers? To keep things moist as well as wearing a mask to keep the moisture in your lungs

 

[may71]

@brightshen , do you want to comment?

I'm not sure if acupuncture alone could help with this. Maybe herbs? Dietary changes?

 

[brightshen]

There is a good chance acupuncture may help. It often works great on "mystery" illnesses. When I was in school I saw a patient who lost his ability to create saliva due to radiation that affected his salivary glands. He improved quite a bit with acupuncture and it was years later. The earlier you start acupuncture treatments the better. It's certainly a good thing to try while the docs try to figure out what's going on. I'm not a strong herbalist, honestly, google would probably be as good as me. lol. I tend to focus on acupuncture because I love the fact that it allows patients to heal themselves rather than have to add anything to their bodies own healing mechanisms. That said, herbs can do amazing things but it's best to find someone who focuses on herbal medicine. Your acupuncturist may also be a strong herbalist or will be able to refer you to someone.

I am so sorry to hear that you are suffering right now. I can't imagine how painful that must be but please don't give up. There are still many things you can try. Allow yourself plenty of acupuncture treatments, it's not an instant fix but I've seen it change lives and treat many very difficult conditions.

 

[JmpMster]

@psychologygeek

I do not have any real advice or answers for you. I am not going to try to diagnose something that neither you with what is obvious a LOT of research and your Doctors (even if hampered by NHS guidelines they are still more qualified than me by far) have not been able to find a treatment plan or even real cause of. The issue does seem that, as with many places, the treatment of pain or discomfort/ quality of life simply is not a priority- if not dying then does not count. I do understand that issue all too well- where the treatment of the pain making life unbearable is ignored.

I have little to offer except to say I am sorry you are dealing with this, and for what little it is worth, though it took several years, I did finally manage to get adequate treatment/pain management by refusing to to accept "nothing we can do" (US Side of world- no idea how to make it work on your side- I am sorry). I have known a great many people similarly disillusioned - and it is particularly hard in the first few months/year when your life is completely turned upside down and nobody is offering answers or solutions- it is how I ended up here on SF as well. But a LOT of these people also find solutions by not giving up, and refusing to accept nothing more we can do as an answer. I have two major medical issues- one is pain based, other is chronic/terminal heart issue- the pain was far harder to deal with to be honest, but also was the one they were least concerned about treating.

Things did eventually get better. I developed some coping techniques and really struggled for a couple years, but then found a pain management center after they finally admitted they could not "fix"the issues. Since then life has not always been great, but it has had enough moments of okay and good that I am glad I did not give up. I can't promise when or even if they will be able to find something that will help you, but I can say I am glad I waited and did not do the only thing I saw as a solution in that first year or so. I truly hope you are able to find help and sooner rather than later.

 

[SillyOldBear]

@JmpMster Ben, would you share some of your coping techniques. They might be helpful to a lot of us. Many thanks.

 

[jack 1957]

Hi all, I'm new here looking for some support. In Oct/Nov I had something that looked like sinusitis, took a whole bunch of meds and by New Year I was left with crippling and excruciatingly painful dryness and burning sensation in my nose, throat, ears and sinuses which radiates to my upper teeth and tongue. Every breath hurts and cause pain, I can't eat, I cant't sleep, I look like a ghost of my former self. I also seem to have lost all my saliva. My mouth is dry, I can't sleep. I have problems swallowing. I've been off work for about a month (only got 3 months before I stop being paid) . I'm not really sure how long can I carry on like this. I've made some arrangements such as bank transfers and last night I wrote goodbye letters to mum and my partner. I feel like I''m loosing grip on life and doctors can't help me. Everything medical is so slow here in the UK and I genuinely feel like I'm dying on the inside.

you poor bugger...i really do know what not being able to breathe properly means. you are i are polar opposites. the mucus i produce doesn't allow me to lay down. ever try sleeping lashed to a post..unfortunately this isn't going to last too much longer.....just thought id say hello and tell you there are people out here who sort of know what you are going through in their own weird way .......jack