[*Abigail]

Greetings! I just found this site, and if you bear with be......I'll relate my experience with neuropathy which included nerve damage to my throat.

In February 1989 I'd been suffering with a sinus infection. After 3 different antibiotics and still sick, the Dr prescribed a sulfar drug. Two days on new Rx I noticed a lump behind each ear. That night I woke up with pain in my stomach....as the early morning hours progressed so did the pain....moving outward until my whole body was in the most terrible pain I have ever experienced.....and I say this after have birthed a 10lb. 8oz baby boy 2 years prior to the onset of this pain. I was admitted to hospital for only 1 night. The Dr discharged me saying that he thought it was all in my head. I told him I would never do this to myself.....never. Two days home I was experincing a cough that would make me loose bladder control, would cause me to vomit....it was so intense it brought me to my knees.

All this time I'm receiving no treatment, and I say this in all honesty, the pain was so horrific that if I had not had a 2 year old baby boy.......I would have killed myself.

Finally my Dr referred me to an internest; at my second visit, which is now 7 weeks after the initial onset of pain and cough, I could describe to the Dr that I was experience different pain....3 different types........he told me he thought he knew the problem and sent me to a neurologist for confirmation.......and yes, I was diagnosed with viral sensory peripheral neuropathy. I was sent back to my family Dr for treatment......he said on my next visit......he did not believe I had neuropathy, and would not treat me for it.

In 1989 neuropathy did not seem to widly known by the general MD community. We went from Dr to Dr.....meanwhile the cough persisted and with time became more debilitating then the pain. With my husband's job we moved frequently, many new Dr.s' who would politely listen to my tale of pain and cough......make notes and the proceed to do a general check up...with no treatment for the neuropathy. I developed a life style, because of the cough.....I mean who likes to vomit in public?......of a hermit. I went out only for my son's school activies......always sitting in the last row, end seat so I could make a quick get a way if the coughing seizure started.

Fast forward to 2006..I go for knee surgery. They put me out and then attempt to insert a tube in my throat.....I start to convulse and they bring me to......telling me to come back in two weeks and they will do a spinal. I go back in two weeks, a new anesthesist who says my lungs are clear and he will do a general.....I say...no please.....and explain the neuropathy, the cough......he nods his head like so many before him.....and then proceeds to give me a general......once again I convulse......they bring me to....and proceed with a spinal. My husband and I use to check the internet reguarly back in the 80's and early 90's for info on neuropathy.....but there was never any reference to coughing seizures. This time my husband typed in neuropathy and cough........and we lucked out......a study done over the past 5 years by Dr. Lee Woo had determined that in patients who had chronic cough or throat-clearing as a manifestation of sensory neuropathy invloved the laryngeal nerve......and........symtomatic management can be obtained with gababpentin.

I took the article to my family Dr., and he became incredulous that I had gone, at that time 17 years without treatment for neuropathy. I refrained from telling him that a year ago when we moved to the community....I gave him my neuroopathy and cough complaints and he did nothing......I just wanted the garbapentin.

I've tried not to bore you with details of my disease.......if you are on this site....I'm sure you each have similar stories.......after surgery I appplied for SSD.......my depression dealing with chronic pain, and anxiety over the coughing seizures had taken it's toll. I'm 60 now, and the garbapentin has helped with the cough, and pain somewhat.....but because I was never treated I now have permanet nerve damage. I was awarded my disability, and try everyday to be positive and not grieve over the last 19 years.....I tell myself that at least I've been around to see my son grow into a man.

I'm glad to have found this site......sharing with others who have been there too......it is good.

[shiney sue]

and welcome to neurotalk,it's the weekend and people come out and
others sleep,but your here,you will find kindness ,highly intellengent
people but not me.lol After reading what you been through is just
a big old not fair. Many of us have talked about will we see or children grow
or our grandchildren. There are people going through what you have and will
lead you in the right direction. Don't worry I promise they will be here.
Oh i'm sorry my name is Sue I'm 61 have a son 32, a daughter,33 and
son 35..I'm more in a wheelchair than not. This place has been a lifesaver.
I have polyneuorapaths and much more. I also have a grandson who will
be 1 next month..I hope Glenn and Cyclop or Kemb. Anyway
you have been pushed around by to many.. Hugs to you and all.And
there's a great lady who will tell you to read the stickies,she gives tests.

[BEGLET]

As Shiney Sue says - welcome to our group.... how awful to be sick that long and have your symtoms just shrugged off and ignored.... and to suffer so much.... at least the med is helping you some now - and thats good to hear...

Yes, many of us (and I'm sure they will post) - have had continuing nightmares with trying to get corrrect diagnosis - been dismissed by doctors - and had to fight unnecessarily just to get help... or are still unable to get it....

You asked about nerve damage to throat - I have both peripheral and autonomic neuropathy and the docs have given me different diagosis over the years - but I had to fight my HMO like crazy in the beginning just to get to see a neurologist... I dont know if at least the fact I had PN right when it started would have made a difference - but have been sick for 8 years now - and need a wheelchair to go out due to severe loss of balance, etc... The autonomic neuropathy has damaged my intestines (not in the same way it doesnt sound like you - I dont start coughing) - but my stomach has stopped "digesting" due to the nerve damage and I've lived on liquids only for seven years - still am losing weight, constantly nauseus - and can completely identify with not wanting to "hurl" on others... I take tons of meds to try to help my stomch digest - but like you - the damage is done I fear - and my best hope is to continue to be able to survive on liquids by mouth.....

You have a good attitude - we cant change what was or wasnt done in the past - but have to continue to fight for good medical care for ourselves.... I cant believe that you were given the anesthesia twice when you had the reaction the first time... thats awful... one thing I've done and others here to do - make sure your doc and anesthesioloigst know about your reactions and that you do have neuropathy before any surgery.... personally I've had lots of very dangerous drug reactions and also find that anesthesia takes much longer to get out of my system then before I got sick.... (I always call the hospital prior to a surgery to talk personally to the anesthesiologist)

Hang in there - and welcome to our community....

[mrsD]

May I ask you some questions?

Do you lose your voice? Especially when you talk for a long period or get excited or try to yell? Is either side of your vocal cords paralyzed?
(this can be seen on exam).

Do you have any thyroid disease? Do you take any blood pressure drugs?

Sulfonamides are capable of causing nerve damage in a small number of people.
Did you have any allergic sysmptoms like rash/redness over the trunk of the body, or asthma/shortness of breath? Was the drug stopped or did you continue it.?

[*Abigail]

Originally Posted by mrsd

May I ask you some questions?

Do you lose your voice? Especially when you talk for a long period or get excited or try to yell? Is either side of your vocal cords paralyzed?
(this can be seen on exam).

Do you have any thyroid disease? Do you take any blood pressure drugs?

Sulfonamides are capable of causing nerve damage in a small number of people.
Did you have any allergic sysmptoms like rash/redness over the trunk of the body, or asthma/shortness of breath? Was the drug stopped or did you continue it.?

First, thank you so much for the welcome. I intend to be a permanent, and hopefully contributing member to this site. Just wish I had found it sooner!

Now to the questions: No, I never lost my voice, and there was no paralization of the vocal cords......and yes, I've often wondered if the sulfa drug triggered the PN. I do not have thyroid disease.....I do have high blood pressure and take hydrochlorot. I had no OBVIOUS allergic symtoms to the sulfa drug, and yes the drug was stopped immediately. My coughing came on as suddenly as the pain. I can not eat without water or carbonation.....I drink a lot of club soda......and I can no longer eat foods such as popcorn, nuts, rough grains.......even with carbonation my coughing is still triggered. Other easy triggers are strong smells......perfume, smoke, cleaning solvents, and last but not least the PN symtom that comes out of the blue in sharp, stabbing pain is an automatic trigger for the cough....my whole life I've had ongoing sinusitis....tested negative for allergies and asthma many times.......in any event to this day my symptoms worsen when I have a case of sinusitis.......especially the cough. After my coughing seizures I am exhausted, and very congested. Clearing my throat, lungs upwards to an hour after an attack. The attacks have been so strong that at times I thought I'd burst from the inside out........and as I've said, I do vomit. I'm also taking alprazolam (xanax)....that's suppose to motivate/calm me to take on the world again.....cymbalta.....to help me cope with 18 years of illness with no treatment, meloxicam for pain, and last but not least.....wonderful, marvelous gabapentin....it helps me the most I think......I've also been in counseling for two years now.....trying to deal with the past 18 years, and yes I try to have a good attitude, but I'm getting help with it......I'm very thankful to my therapist who tries to show me how to cope, and doesn't give up on me......my family.......but the Doctors......well they have not made the list ......yet......

[mrsD]

is related to sulfonamides. If one is allergic to sulfa, a reaction can come from the HCTZ.

This sounds spastic...more like a spasm than anything else.

One thing that happens when you take diuretics is that you can become magnesium deficient. Low magnesium will encourage spasms, anywhere.

Swallowing involves the esophagus...have you been scoped? Probably not if you cannot be intubated.

I am amazed that the medical community cannot help you swallow. Now they use botox to relax certain muscles...has this be offered to you?

I know the feeling of strong flavors making you cough. Even my husband does it...with pickles.

Have you tried gargling with lidocaine before eating? This is often done for chemo patients who receive radiation to the neck/esophagus. This then numbs it and makes it easier to eat/swallow. (sometimes the lidocaine is swallowed, but a doctor decides that). Also inhaled steroids for asthma may help. Some of the drug gets deposited higher in the airway, and does not reach the lungs. This may provide some anti-inflammatory action to relax whatever is triggering you. The gag reflex is very sensitive in some people..and can become Learned in rare cases. So numbing it may help. I know some of my supplements are really huge pills, and if I think about them, when I take them, I don't do very well. Many people cannot swallow large capsules/tablets for this reason.


Where is this pain located when you cough? In the throat?

I'm sorry but I have some problems understanding.

Sinus infections can be due to fungal organisms. Candida mostly. Have you had a workup to locate what organisms are causing your grief?

It does sound exhausting and incapacitating, to me. I don't know how you cope with it. Really.

[MelodyL]

Hi there:

I must say, you have impressed the heck out of me with your positive way of thinking.

You've been through the mill, but yes, you have been able to see your little guy grow up. I do hope he is a comfort to you.

You need less stress and more comforting from those who surround you.

You have come to the right place.

Many people here have been through the ringer (and beyond).

We share info, (and if you go to Social Chat), you will see that many of us use humor to get through our experiences.

So again, welcome to our little corner of the universe.

Hope you are having a (I'd like to call them ...a not too much pain day).

Take care,

Melody

[Zini]

This post is to let lucky know there are others like her out there. I've had a chronic cough for 18 1/2 years now. And hoarse for, honestly I've lost track, 2-3 years (this time). I've been to doctors who have scoped me for GERD, CT scans of sinus, asthma, allergy testing, and more. I've aggressively searched for an answer only to be disappointed and pull back from the medical community. I've searched herbal/natural methods. I've had one Nurse Practioner who has been in my corner but really didn't know what more to do. This NP had another 'cougher' who presented with the same symptoms. While the cougher was on her quest she was directed to OSU Medical Center a Larangeal doctor who diagnosed her with Larangeal sensory neuropathy. She is on Lyrica and is 90% better. This caring NP called me the other day when she found out about the other cougher's relief. Long story short: I now am in the process of getting a referral to OSU Medical Center. I'm hoping and praying this is the right track for me and that the end and relief is in sight.

my other symptoms: I've had two thyroid surgeries and after each one I lost my voice for 2+ months. ON the second surgery it got a little better then was so bad that it sounded like a raspy whisper for more than a year. It is back but I will get hoarse if I've used my voice alot. I cannot sing or certain things come out with no sound.
I've had a sore throat for a couple of years now, specifically on the right side of throat.
I've been diagnosed with asthma but I wonder if this is a misdiagnoses. I've never been hospitalized with an asthma attack but my cough produces mucus.
And strangely enough when I was 18 I did have a bout with neuropathy that I never have connected with this...my left forearm was partially paralized for more than a year then feeling and motion started coming back. Until tonight reading this forum I never have even mentioned this to a doctor. I just thought it was some strange thing that happened!


Anyway that's all I can think of tonight. I can't believe I came across this forum tonight and read LUCKY's post. I believe you, Lucky. There are more people like you. This is a really tough thing to diagnose I guess. I am asking for your prayers out there. Please pray that my appointment will be a success and they will finally find a correct diagnosis and RELIEF for this cough.
Blessings to all

[cyclelops]

Welcome to the forum. I do so understand the anesthesia issue. I can not do generals. I just had a issue last week. I got an injection for bursitis and the doctor said no more, that he wants to remove the bursa in my hip and it requires a general. My rheum and neuro say 'no way'. So now what....live with this hideous pain? I say, give me the shot, who cares!

Rheum says it does no good to remove connective tissue....it will just recur elsewhere. It is systemic. But, the doctor doesn't get it that some people can not do anesthesia.

I also have a cough, but I have mild lung fibrosis, autoimmune issues. I am sure the neuropathy is an issue too.

Ugh, today it is a severe headache.

I do hope you feel better. I am glad you found out what the issue was. I have kids the same age as yours and lovely grandkids too. They are the light of my life.

Well, again, welcome.

[JoanB]

Hey cycleops, can you do that twilight sleep that they give you for a colonoscopy? I had that and a spinal block (I think that's what it was called) when I had my hip replacement. If they can do a painless hip replacement, which is pretty brutal surgery when you think about it, I would think you could do the surgery you're talking about. And waking up is much nicer than a general, too!