Severe Nuerological Symptoms

Hi. I have severe shallow breathing that occurs 24/7 at rest,I can barely walk around my house; Pulmonary tests, oxygen levels, Ct lung scans, ABG blood tests are normal.. I get severe chest discomfort, heart symptoms from just mild walkking around house; cardiac tests show nothing. Severe lightheadedness with visual loss/tunnel vision, even from just moving head to look at something sometimes and when standing this happens within minnutes; brain mri show nothing. Severe swallowing problems, I have difficulty with solids, liqquids and even my own saliva; i have severe breathing issues during and after eating or drinking. Also feels like something is stuck in throat. Yet swallow tests including barium modified swallow show nothing. I also have very low voice, slurred speech, severe issues processing information and visual deficits when moving my eyes back and forth. I now have trouble writing; its all scribble. Even typing this, I have great difficulty typing, I can no longer type with two hands because I can coordinate my fingers; its like they jerk away from keyboard when I type. I tried valium n benzos and they made me worse. Many SSRI medications made me too sick from side effects. Is this FND? Nuerologists arent finding cause and are putting me in mental box or blame symptoms on my ulcerative colitis and deconditioning and general weakness. I am 34. Please help me thanks.

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  • Hi

    My symptoms were very similar to yours in the early stages of this condition, I was mostly bed bound for nearly a year, doctors couldn't find anything wrong. After many tests I was diagnosed with fnd and post virul illness, I can relate to almost everything you are saying especially the severe breathlessness and chest discomfort which I still suffer from 3 yrs later but not as severe. I truly believed I would never get better but things thankfully improved but unfortunately never totally went away. Today I have good and bad days but I have managed to return to work although some days it ls a struggle because of the job I do. I am 37. Unfortunately only a doctor can diagnose you but some are very quick at putting everything down to stress and anxiety when it's not always the case.

  • Hi, Lawley3. It is somewhat of a relief to hear someone had similar symptoms to mine. Thank u for reassurance but can I ask if you ever felt you would literally not survive another minute because your breathing was so severe and constricting. And coulld you please elaborate on what you did to improves your breathing, chest discomfort and other problems. Did FND diagnosis lead to treatments, exercises or meds from doctors that improved you? Any talk therapy or similar treatments? Thank you so much as I seem to be getting worse and wait for doctorss and tests. Thanks.

  • Lawley you are 37, young like me. Can a nuerologist diagnose me with FND or only nuerophysiologist.? Thanks. And I am inspiired that u recovered and hope u conitinue to do so. Can I also ask if your symptoms initially included chest discomfort of some sort when performing physical activity? Maybe also alittle lightheadedness with it? thanks

  • The breathlessness and the chest discomfort was my initial symptom and the most severe symptom. Honestly I could not walk across the room without feeling like I would collapse any minute. I truly thought I was not going to make it, I could not hold a conversation because I couldn't breathe even just turning over in bed made me breathless. I still have this symptom 3 yrs later only not as severe but it is there daily. All tests have come back clear u just can't get my head around it. The dizziness and lightheadedness is awful too. A neurologist diagnosed fnd bit I have never been put on any medication or had any talking therapy.

  • Hi Lawley,

    Thats exactly how I feel.ITS like listening myselkf talk!.amazing story but how did u overcome the extreme breathlessness. How long did it last before it got better? What plan of action did u take to get moving again adn feel better?Please tell me because I feel there is no way out just like u did. Thank you so much

    timtim99

  • I can honestly say I didn't do anything overcome it, it just eased in its own but my severe symptoms lasted for at least a year then it still continued but became less severe. 3 years on and it's still here and some days it Is so bad I feel like I could sleep all day but then the next day i might wake up and it won't be as bad, I didn't do anything different it just randomly changes on its own. On an ok day (I say ok because I don't have any good days anymore) I believe that my symptoms might actually be functional but on a very bad day I start to worry and doubt my fnd diagnosis although tests have never shown anything. I haven't found any pattern to my symptoms or triggers but I have noticed that drinking a lot of water helps with some of the breathlessness and lightheadedness so all I can think is maybe it's a low blood volume thing.

  • Lawley thank you, you have been most helpful with your story and info. I was just wondering, what is a good day in terms of physical activity? how far could u walk? Well enough to talk without problems and attend work if u had to? Did u ever have any swallowing problems? Ever take any benzo anti anxiety drugs like valium, ativan,xanax, etc.? Thanks so much as I am still trying to figure out wht is happening tomy body and the doctors are not helping much. Thnx again.'

    Tim Caravello

  • Hi Tim

    It is great to chat to other people who completely understand what we are going through. I hope you have got good support at home? I didn't have this and I had so much doubt from family and this has stayed with me even though I am doing better o feel like I can't forgive and forget how some people were with me when I was going through that awful time in my life. I did develop swallowing problems at the peak of my illness but it didn't last long. I also lost the use of my left arm and hand but that too has got better. On a bad day now most of my symptoms seem to go to my left side but on an ok day I don't notice my left side being bad. The one symptom I am plagued with daily is still the breathlessness and chest discomfort this has never gone away. I can hold a conversation now without becoming breathless but when I stand up I get chest heaviness and when I walk up any incline eg a ramp or stairs. Luckily I have managed to return to work in the last 12 months and have found this generally ok so far but previous to this I was off work for 18 months unwell. What was your health like previous to this?How long have you had your symptoms for? Did anything trigger it?

    Best wishes to you

    Louise

  • Well i will get back to uu soon as i am sick. But i had some symptoms foor years but breathing swallowing for 2 years almost and the cognitive issuues and tremors and lack of coordination for this year along with eye symptooms

  • Tim,

    I'm sorry to hear that you are too sick to write at the moment, this makes me feel sad as I remember only to well what it was like and what you are going through. I wish I could be of some support to you and to others who are suffering so much and give you a bit of hope by saying that things can improve to a level where you can start to function again. I wish I had answers for you but I don't unfortunately. Believe me I have had so many different tests in and out of hospital, cardiac tests, blood tests, pulmonary tests, blood gases, addisons desease, 2 mri scans, I have been seen at 3 different hospitals and have seen 4 neurologists and countless cardiologists but no one can find anything wrong. I was seen by a neurophysio twice but she just gave me exercises to do at home but I was to weak to do most of them. Doctors tried me on various anti depressents, ssri's but the side effects made me so ill. I was referred for cbt but they wouldn't see me as they said my problems were physical not mental so it wouldn't help.

    I really hope and pray that you get a turning point in your condition soon. You may find that as one symptom eases another one starts unfortunately that is part of this awful condition. Don't stop searching for answers I know it is hard when you are so weak.

    I am here if ever you want to ask any questions or just a chat.

    I wish all the best for you

    Louise

  • thanks Louise i Reallly apppreciate ur kindness. But how did u get better if you couldnt do treatments at ur worse point? Cuz I feel when ur at ur lowest treatments and meds are the only saving grace. thnks for ur support :)

  • I have never recovered from this just things improved but never went away. I still have many days where I feel really ill and haven't the energy to do anything because of my symptoms. I am still plagued daily by the breathlessness and lightheadedness and off balance feeling. I still have weakness, muscle twitches, tingling numbness burning pains etc the list is endless honestly. It was the gp that wanted to fill me with antidepressants but they made me too sick and the neurologist told me that no medication will make this better and the side effects would probably make me worse. This frustrated me as I was desperate to try anything that might help me. I'm sorry I be of much help but I am still searching for answers myself. You may be fortunate enough to find a neurologist that is willing to help you and give you a treatment plan.

  • no need to apologize my friend as I see you are quite confused yourself about this frustrating illness. I be sure too let u know of any breajthroughs i have. currently pursuing chronic lyme

    thanks my friend stay brave and strong

  • Hi Tim

    Hope you are as well as can be? Thank you so much for your kind words they mean a lot to me. I hope you get some answers to this awful frustrating condition. Please keep in touch my friend, it is lovely to have met someone who has exactly the same symptoms as me and completely understands.

    Take care of yourself, stay strong, thinking of you

    Louise

  • thanks so much Louise. I am declining but trying to make it to important nuero apppt tmrw. ihave sleep study i willk try to get to soon if i can even make these appts. your very kind wish u best. take care.hope ur doing well

    tim

  • Hi Tim

    I hope you managed to make your appointments with the neurologist, I'm so sorry to hear your health is declining. I really hope you do get better and they find out what is causing your symptoms. I really do hope you get some answers.

    Don't give up

    Stay strong

    Best wishes to you

    Take care

    Louise

  • Have they excluded POTS? Has anyone considered ME? Might be worth speaking to people in the ' 25% group ' .

  • I said this to my doc. He said that too is a "conversion disorder" so I'd still be in the same boat of no medicine will help/cure. Lol

  • Get another doc. Latest ME research indicates strong evidence for biological factors...sounds like your doc is rather behind the times.

  • just wonderiing if me has autonomic symptoms like shortness of breath and lightheadedness. and what type of doctor tests for it? thank you for your time

  • Yes. Autonomic dysfunction is common. The lungs and diagphram are muscles like any others so can suffer from rapid fatigue in the same way as legs. Many 25%-Group - i.e. severe ME patients have so little muscle power, including to their lungs, that they are bedridden, and some are on oxygen. I often get breathless if I try to walk and talk at the same time during relapses. Lightheadedness is also common for ME sufferers, although for me it tends to be a case of either vertigo, or the floor coming up to meet me - proprioception problems.

    There are currently no tests, and there is no cure, for ME. It is a diagnosis of exclusion after all other things (i.e. structural neurological problems) have been ruled out. There are few doctors who specialise, and even fewer who have a medical/biological focus on the disease such as it was explained originally by Dr. Ramsey (a lot of the doctors these days are actually psychiatrists, and depending on how far they take that professional viewpoint into their treatment programme may or may not be of any use to individuals). Having said that, my most useful medic through the last 7 years in terms of support for me and helping me manage my condition has been my neuropsychologist. She is with our local ME team. You can look these up on the ME website, but not all areas have them. You often have to be referred by your GP.

    I learned to manage my ME by using relapse plans - a combination of planned resting (using breathing and relaxation techniques - lying on the sofa in front of the telly doesn't cut the mustard); active energy compensation (so I get on the scooter if the legs aren't working) and sleep hygiene to try and make the body (and the brain) rest as much as possible - so for example loads of soporific herbal tea and a planned hour of downtime before bed, since Amitriptyline doesn't really agree with me. Of course for most of the last 7 years this wasn't so much a 'relapse' plan as a 'daily living in the hope that it will get better plan'.

    I don't seem to have worked out why it comes, why it goes away, or how to stop it coming back though...and I can't tell either whether it is FND driving the ME, ME relapses causing the FND, or my regular and new onset migraines causing brainstorms causing leg problems leading to ME leading to FND, but at times I do get a sense that it is all connected. The only thing that the doctors have been able to say is that it is in no way at all connected with the aneurysm they found two years ago in my brain - surprising, but, it seems completely true! So the one structural thing that can be seen on the scans is neither here nor there as far as all the rest of the stuff is concerned. The brain is indeed a bizarre and incredible organ....

  • I have basically the same symptoms described....and similar experiences over the course of almost 8 years. This has been horrible for me as I was so healthy, active and had a full and fulfilling life before. The research that is being done has documented that ME/CFS...now identified as Systemic Exertion Intolerance Disease is a physiological, systemic, neurological disease. No matte.r..for the most part, the docs don't know about this, don't believe it and dismiss it as psychological.

    I began having uncontrollable movements/myclonic tremors over two months ago. I have been gong through hell since then. Barley able to mange in my home, several trips to ER, one short hospitalization........rude and dismissive drs and staff, with a few exceptions. I have been told that "I am completely deconditioned due to not doing enough, I am invested in my illness," inferences of faking, confrontational statements in response to my descriptions of what the research is showing about SEID, raied eyebrows in response to my having sensory overload from lights, noise, too much stimulation....etcetcetc.

    It is horrendous how patients are being mis-treated. I usually take print-outs to each and every appt with info about ME/CF?SEID. Some drs do show interest, read teh info and ask questions. Most hand it back or express a dismissive attitude.

    I have search for a center, ME/CF/SEID specialist. There are none in the state where I live. There others are all self-pay; over $400.00 an hour with the initial appt 3 -4 hours plus costly tests. Low research funding hinders the progress. Different causs for ME/CF/SEID makes treatment development more difficult. There are biomarkers and tests that have been developed. Majority of drs have no knowledge about these new developments and won't listen if discussed, as the still believe this is a psychologically based illness.

    I suggest watching Jennifer Brea's TED talk on ME. Read Sr Sarah Myhill's research and protocols, Dr Nancy Klimas's info and also researching Mylagic Encephlomyletis. Dr Ron Davis is a researcher at Stanford University. His son has a severe case of ME, is confined to his bedroom.

    The most recent neuro, who stated, you have been evaluated by numerous drs, probably the most evaluated patient in the whole state," has ordered an EEG to rule out a seizure disorder..and agree to follow me...but I sense he was not being truthful about the following me..If the EEG does not show any problems...I feel like I am really screwed. I will thin, be labeled as a "head case." NO matter that I have, at my request, been evaluated by Mental Health professionals and only have a diagnoses of anxiety with some periods of depression due to a PHYSICAL CONDITION.

    I understand and emphasize with all of you. We are all so dis-empowered by this illness and the medical community.

  • what disease did doc say was conversion disorder? can i ask ur symptoms and what meds ur taking? thanks

  • Conversion disorder is the old way of saying it was functional. But with conversion disorder there's a clear causality from event triggers like ptsd etc.

  • POTS I dont think I have although nex week I do orthostatics with nuero and will discuss..But can POTS do all that? Also can ME cause alll these symptooms as well? Thanks for your suggestions.

  • Go to MEA website for good discussion of the condition and current science. And google 25% group too.

  • I see one of the other replies mentioned POTS. I was diagnosed with this at Mayo Clinic in Rochester 4 months ago, after struggling with the same symptoms you are describing. There is a special testing that they must do to diagnose this, there are 3 stages. I was also diagnosed with autonomic neuropathy and hemi-facial spasm at the same time. You see I believe in most of us FND is a name given a list of symptoms that don't come up in text books but is really a yet undiagnosed neurologic illness that manifests itself in different people in countless different ways. I had not been able to eat, drink, and yes keep my own saliva down for almost 6 months, started out slowly and then unable to eat at all and could very little drink in. Lost over 35 pounds, and still cannot handle meat and many foods. I survive primarily on avacados and cashews. They put me on a new regimen of drugs that does help me most of the time but eating continues to be a problem. Please look up POTS, it stand for Postural Orthostatic Tachacardia syndrome. Your heart rate sky rockets when you get up but your blood pressure bottoms out. I have to drink drink drink and take in 3-4 teaspoons of salt a day just to be able to walk, and somedays that still is a problem. Keep us posted and please try to get tested, it cannot hurt. God Bless, Cathy

  • Cathy.

    I am still in the tank from severe weakness and facial spasms. Have not left house in days. So, short reply.... I too have read the clinical research for years now. Brain retains so little now. Count me as one of your believers. This is organic. It requires molecular approach. They have to think backwards because the body will always struggle to come back to homeostasis in whatever way it can. Many subsets, call them cellular systems, transmission channels, hard wiring, etc. get thrown out of whack. Some recover quickly, some become depleted, some cause long term problems by impaired feedback. It does not show up in simple lab tests.

    I have been told everything from ion channelopathy to stiff person syndrome to a rare subtype of Huntington's. As you say, this is all about names.

    The "salt" caught my attention. It is the singular method my daughter and I both go to for regaining function. And even it has its limitations.

    I stop with a cautionary tale. I lost 70 pounds of weight in ten months from inability to eat. That was 30 percent of my body weight. Doctors were freaked out. This is a dangerous disorder when medical people approach it from wrong point of view. Lack of attempted treatments may be more of a blessing than we know. Prayers to all. I not sure I can climb out of tank this time.

    Dan

  • Hi Dan, For the eating they put me on prilosec 2 -3 times per day, zophran and ativan 1/2 hour before eating. The tests showed my esophagus was spasming so badly it would not allow food down. they did a barium swallow, and the pill got trapped from spasm in my esophagus. With this regimen I am able to get food down some of the time, just nothing too solid.

    Please do at the very minumum try water, water, water, as soon as you get up, I have to drink 16oz. of water before I even get up. Salt constantly, either by salt itself or my extra salty cashews. honestly I was near death and so weak I could not walk across the room, today I attended church, grand children out for lunch and a senior ministry, and its only 2:00 in the afternoon. I am headed to a super bowl party at my daughters, I will not be able to walk out of her house, but I will make it there.

    Bottom line, 4 months ago, seriously I was close to going home to heaven, I thought they would never figure it out, and here I am again today, stable and functioning at least half the time. And yes I still talk out of the side of my mouth, the hemi-facial spasm, and still struggle with walking and talking, but am definitely living again, as full of life on this day that God allows, each day is different, but there is always hope and always people out there that genuinely care. In prayer, Cathy

  • Amen, Amen, AMEN Cathy.

    Teared up just reading and knowing your angels are with you each day. Grace is given.

    Enjoy the family. Daughter having attack. Required cane to get upstairs. Feeding salt. She will be back for game as all three of us to stay together.

    Thank you. Another blessing brought this day.

    Dan

  • Cathy thank you for taking the time to help me and telll your story. I agree with you totally; this is undiagnosed disease that manifests in different ways. What did you and docs do for your swallowing to show such great progress.? Did you have swalllowing tests? I am also very interested in why avacados and cashews are the foods that you can handle best since nuts are incredibly hard for me to swallow. Also why do you think I could have POTS, what symptoms of mine makes u think that? Can POTS cause swallowing and breathing problems?

    Thanks so much. God bless you as well.

  • Cathy thank you for taking the time to help me and telll your story. I agree with you totally; this is undiagnosed disease that manifests in different ways. What did you and docs do for your swallowing to show such great progress.? Did you have swalllowing tests? I am also very interested in why avacados and cashews are the foods that you can handle best since nuts are incredibly hard for me to swallow. Also why do you think I could have POTS, what symptoms of mine makes u think that? Can POTS cause swallowing and breathing problems?

    Thanks so much. God bless you as well.

  • POTS is when you get up you either pass out or feel like you are going to. You are so winded just moving across the room you are gasping for breath. Your blood pressure bottoms out and your heart races. I would feel so weak and short of breath I would just go down.

    Yes, I had many swallowing tests. My esophagus was spasming so bad they thought I had an obstruction. They did a barium food test and the pill they game me became stuck in the espophagus. Also, the water swallowing test showed obstruction, but it wasn't an obstruction, they went into dialate my esophagus and it was spasming the whole time.

    I now take prilosec, ativan, and zophran to relax the spasming enough. Sometimes it works better than others. Why the avacados they are nice and soft, and I love them. I was never a nut eater, but I have to get lots of salt into my body. I tried cashews as they are a soft nut. I nibble them like a chipmunk or squirrel tiniest little nips at a time, and they work great. I have gotten so much better on them, now I have to have them 2-3 times cause I have fallen in love with them. Like I said I still have days I am so nauseated and food will not go down. But overall so much better. Have a great day, God Bless, Cathy

  • THANKS Cathy. POTS sounds awful and very simillar to how I am feeling. Did u ever feel breathing was worse lying down or while you were sleeping?

  • Definitely not when sleeping, and only when lying down when it was because I was already symptomatic. And Yes it can be more challenging than one would think, even with doing all I know to do now, will still get so weak at times if i do not drop down I will fall down, sometimes I have to just lay on the floor and crawl to where ever or wait till I feel confidant enough to try walking again. But they are like once a week now, rather than constantly.

  • Hi,

    I'm sorry to hear you are having such a terrible time.

    I too am 34. My symptoms started with episodes that appeared like a stroke, and now every few days/week I tend to get either burning in chest, shortness of breath, limb weakness, tingling, swellings and brain fog. Movements can seem to pass in slow motion when I have a episode.

    Tiredness seems to be the biggest contributing factor. Stress can play a part too, even though I am considered to be the most placid person amongst my friends and family. In addition, I tend to have a episode after a injury.

    I am surprised if the neurologist hasn't suggested FND....

    Mine was diagnosed after the 3rd visit to A&E with the stroke like symptoms of facial palsy, slurred speech and limb weakness.

    I broke my leg 2 weeks ago and I had FND symptoms immediately after impact and then nothing for 12 days. I think my body was in 'fight or flight' and I have had to persevere until a few days ago when the tingling and swelling has started to re-occur. A extremely strange and frustrating condition this FND.

    I am scared of becoming a different person sometimes but am extremely grateful my symptoms are not as bad as other people with this under researched condition.

    I hope you find a way to manage your symptoms. Reading and doing unrepetitive hobbies have helped me.

    All the best.

  • Thanks for your advice. Wish u a speedy recovery.

  • Tim you asked earlier about ME. This is what Dr Melvin Ramsey, the doctor who first described it after the Royal Free outbreak in London in the 50s, said of it in his book on the subject:

    "It may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection..."

    "Instead of an uneventful recovery the patient is dogged by persistent and profound fatigue accompanied by...headache, giddiness, musclecpain, cramps or twitching, muscle weakness, paraesthesiae, frequency of micturation, blurred vision and or diplopia, hyperacusis (alternating with deafness or normal hearing), timnitus, and a general sense of 'feeling awful'".

    He goes on to describe muscle tenderness of the sort often linked with fibromyalgia, and clumsiness; circulatory impairment including problems with temperature regulation; cerebral dysfunction - memory loss, information processing problems, word finding problems, and autonomic system dysfunction including POTS and severe sweating. Paralysis of swallowing was reported in some of the outbreaks, as were problems with eye movement.

    Variability of symptoms across days and during the day is 'a constant feature in the clinical picture' as is 'an alarming tendency to become chronic', sometimes with periods of relapse and remission, sometimes not. Relapse is often triggered by various sorts of stress, but not exclusively. He stresses the importance of muscle fatiguability as a defining symptom - with a prolonged delay in return to normal muscle power.

    He doesn't mention breathing difficulties but if you read the experience of severely affected patients with ME you will find it included. The lungs rely on muscle power, after all...

    His book was published in 1988, after the psychologists McEvedy and Beard and others following their lead had convinced the world that what up until then had been treated as a serious but insufficiently understood neurological condition was in fact just 'mass hysteria'. Funding for research into biology of the diseas plummeted...it is only just recovering.

    I was diagnosed with ME in 2010 but my specialist has never been convinced that it is the whole picture and FND was added to my diagnosis in 2013. I think there is a lot of overlap, but I would probably think that for me my FND is a symptom of an ME relapse. I do not struggle to walk when well; when I struggle to walk all the ME symptoms listed above are a feature to some degree or other.

    Of course the other way of looking at that might be to say that ME is a functional disorder...but if so I believe in my case it has a biological basis - I became suddenly and acutely ill, with the vertigo described, also low grade fever, swollen glands and antibody reaction suggesting viral involvement. I was initially treated for a suspected ENT infection. That this could in some way have affected my brain circuitry and left me with intermittent short-circuiting is an image I am happy with. That my relapses happen when life appears to be going swimmingly, and don't happen when the stresses I am facing are significant (such as when I had brain surgery for another condition last summer) adds to this conclusion.

    Hoping you find some of the above helpful.

  • I'm sorry things have been so complicated and you have so many issues. I get it. I'm sure we all do... I'm still new here and only recently been diagnosed with a functional gait disorder. My primary neurologist sent me to a movement motor neurologist when my muscles tests did not correlate with the degree of difficulty and progression. He did a very thorough evaluation and it was similar to others yet different. I'm still not sure on all,of this, but one thing he did state was this was NOT all in my head. In the sense that I'm making it up or that I have any control over things I often say my body is going all rogue on me lol. I remember the morning of the appointment, I was telling my daughter it's like I can no longer walk and talk at the same time and here was the new neurologist testing just that....It was a crazy over 2 hour long appointment. When he ever told me that I have a functional gait disorder, it was hard to process. He assured me that what was happening to me was real, just not caused by the disease like in MS. Some injury ( autoimmune or other illness) caused my brain to malfunction and the signals that my brain send out are causing the muscle not to function. He compared it to a computer....the hard wires are fine (muscles, nerves) in terms of structure which is why they do not show anything is wrong in the testing...but my software ( my brains signals ) are malfunctioning. It is a real neurological condition. Like I said still processing But one thing he did give me was a web site. I hope it helps : neurosymptoms.org

    Sending positive thoughts. ❤️

  • thanks so much patti for ur support and the website. I wish u best of luck in figuring this out. Please let me knoow of any improvements u achieve tnks.

  • Hi Tim,

    I have suffered almost identical symptoms for five years (crushing and/or burning chest pain, breathlessness, trouble with speech and swallowing, extreme fatigue) as well as head and hand tremors. Other than a weak esophagus, all my tests were normal (heart, lungs etc) - except I was lucky enough to come across an Ear Nose and Throat specialist who had worked in a neurological clinic in London, and he knew what to look for. He put a camera down and was able to see that my vocal cords had a tremor - the shakes were internal as well as external! He diagnosed me with Spasmodic Dysphonia, a functional speech condition, but he said more accurately it should be called a Laryngeal Tremor, but they don't recognise that in Australia. He said it was aggravated by a form of silent reflux called Laryngeal Reflux where acid fumes from the stomach burn and damage the vocal cords and throat. The anti-reflux medication caused me unmanageable side-effects, but I was able to get some relief and gradual improvement in my speech by propping my bed up (8 inches at the head) when I sleep. I also started taking shark cartilage to help with my mouth ulcers (caused by the reflux) and this worked wonders.

    Unfortunately, though my speech improved, the breathing issues continued to worsen. Originally, the 'attacks' of breathlessness only occurred with exercise or exposure to cold air, but it got to the point where even very mild activity triggered an attack, and they could last for hours. I would also wake up at night gasping for breath. I developed extremely high blood pressure and severe cognitive issues - my GP was concerned about dementia, even though I'm only 52. Multiple visits to specialists and emergency depts brought no relief or clue to what was going on other than 'anxiety', which I disputed as being the cause.

    I eventually searched for answers myself, looking up every form of breathlessness I could fine. None 'fit'. Then I typed in 'Laryngeal tremors and breathlessness' and this lead me to a very rare condition called VCD - Vocal Cord Dysfunction. With this condition, the vocal cords collapse when inhaling, so it is like trying to suck air in through a tiny straw. It does not effect blood oxygen levels, but it is absolutely exhausting. It is triggered by exercise and cold air - though hot air can trigger attacks also. It can become so severe that even mild movement triggers attacks which can then last for hours or become almost constant. It leads to extreme fatigue, hyperventilation (rapid breathing), pain and swelling in the throat and upper chest, high bp, high cortisol and adrenal levels from getting stuck in 'flight or fight' mode as the body is struggling to get enough air, and cognitive problems.

    Bingo!

    There are vocal exercises and breathing techniques which help manage the condition by teaching you how to keep the vocal cords open. I was a bit skeptical, but I gave them a go and the improvement has been remarkable. It took about a week to get a hang of the new breathing techniques and break the old habits, but now I can stop or at least greatly reduce the attacks. My mind is clearer and I feel much calmer. I still have other neurological issues, but being able to breath without constantly gasping for air is wonderful.

    I don't know if this is your problem, but it sounds very similar and might be worth exploring.

    All the best,

    Sue

  • SUE thnk u so much for writing to me. cAN U TELL me where to get the vocal coord exercises and breathing exercises. Also did u get chest discomfort? did breathing get worse when lying down? did this cause lightheadedness? Did it feell llike your diaphragm was almost paralyzed and that your breath was being held? Was breathing in sleep worse? Did your swallowing issues resolve after exercises? so sorry for all the questions. thnk u :)

  • So sorry for the delay in replying. I'm new to this site, and I missed the notification.

    To answer your questions - Yes, I suffered from awful chest pain for several years. It was episodic, but could be bad for weeks and even months. I had my heart tested every which way as well as my lungs x-rayed several times. I think the pain was coming from having to breath so hard to force air past my restricted vocal cords. There was also swelling in my throat I was unaware of until it settled down. Plus, I didn't realise I was hyperventilating, and that is exhausting and put a lot of stress on my throat and chest wall muscles.

    Dizzyness was a big problem, as was waking up gasping for air and feeling like something was sitting on my chest when I lay down. I didn't get the 'diaphragm being paralysed' feeling, though to be honest, it was hellishly difficult to tell where the problem was coming from, as breathing just hurt so much and was so hard!

    I am so frustrated, as I've searched google, but I can't find the original article I found that easily explained the exercises. Sigh.... Basically, it said to purse your lips when breathing (the shape when you're whistling) as this opens up the throat and stops the vocal cords from closing. I was skeptical, but it worked. It also said to count your breaths (normal is 8 - 16 or 12 - 20 per minute depending on which site you look at) and make sure you're not hyperventilating. During attacks (which had become almost constant) I was breathing as many as 40 breaths per minute - short, painful gasps. It took a few days to calm things down. I felt a bit daft, but then I worked out how to keep my throat 'open' and relaxed without the pursed lips. It means having to 'mouth breath' but I only have to do it when an attack comes on now, which is nowhere near as often.

    The swallowing problems have settled right down now that my throat is not so sore and inflamed.

    I hope this helps. I'll keep an eye out in case you have any more questions I can help with.

  • Hi That WAS helpful thanks but how many minutes per day did u do exercises? Aslo did u have breathing issues in sleep? wAS breathing almost a problem 24/7?

  • I'd been practising deep breathing (in for a count of 6, pause, then out for a count of 8) off and on for ages, so I had that part down already, though I actually found it helped more to just breath 'normally' but at a slower rate when the attacks occurred. The biggest breakthrough for me came with the 'pursed lips' breathing, as I could feel the airway opening and things quickly improved. I just did it every time my breathing started feeling constricted, which became less and less very quickly - maybe over the course of a week? I haven't woken up gasping since then, but I still snore, so that's a problem. If you don't feel any relief at all from the pursed lip/open airways breathing, it might not be the same issue. :(

  • If you breathe out with your lips pursed, this raises the air pressure in your lungs (and throat, of course.) this can help asthma sufferers breathe easier who might not have their inhalers with them or perhaps want to ease up on using an inhaler. Learned that in an asthma class a number of years ago. It also helps folks with pneumonia or bronchitis to open up the lungs. Not as quick or as powerful as an inhaler, of course, but an option in some situations.

    And it can help calm one down when anxious.

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