advertisement
Reply
 
Thread Tools Display Modes
Old 04-12-2008, 07:42 PM #1
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
10 yr Member
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
My Mood: New to Community w/info if you have nerve damage to throat.
10 yr Member
Default New to Community w/info if you have nerve damage to throat.

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.
*Abigail is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
heb1212 (08-05-2013)

advertisement
Old 04-12-2008, 09:54 PM #2
shiney sue shiney sue is offline
Senior Member
 
Join Date: Mar 2007
Posts: 1,812
10 yr Member
shiney sue shiney sue is offline
Senior Member
 
Join Date: Mar 2007
Posts: 1,812
My Mood: New to Community w/info if you have nerve damage to throat.
10 yr Member
Default Hi

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.
shiney sue is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 02:03 AM #3
BEGLET's Avatar
BEGLET BEGLET is offline
In Memorium
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
10 yr Member
BEGLET BEGLET is offline
In Memorium
BEGLET's Avatar
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
My Mood: New to Community w/info if you have nerve damage to throat.
10 yr Member
Default Hi Lucky,

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....
BEGLET is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 05:17 AM #4
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
Question Wow..that is an amazing story.

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.?
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 11:10 AM #5
MelodyL's Avatar
MelodyL MelodyL is offline
Wise Elder
 
Join Date: Aug 2006
Posts: 8,292
10 yr Member
MelodyL MelodyL is offline
Wise Elder
MelodyL's Avatar
 
Join Date: Aug 2006
Posts: 8,292
My Mood: New to Community w/info if you have nerve damage to throat.
10 yr Member
Default

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
__________________


CONSUMER REPORTER
SPROUT-LADY


MelodyL is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 12:41 PM #6
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
10 yr Member
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
My Mood: New to Community w/info if you have nerve damage to throat.
10 yr Member
Default

Quote:
Originally Posted by mrsd View Post
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......
*Abigail is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 01:25 PM #7
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
Lightbulb hydrochlorothiazide

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 02:49 PM #8
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
10 yr Member
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
My Mood: New to Community w/info if you have nerve damage to throat.
10 yr Member
Default

I don't have pain when I cough, and there is no numbing or paralysis......if there were numbness then I don't think I'd have the problem.......my throat is hypersensitive. Neuropathy pain in my hands and feet will initiate coughing, but I have none when I cough.....I never had pain in my throat. If you look up the study.....just google it......by Dr. Lee Woo......it might answer some of your questions. I can eat......and do.......eating does not always trigger a cough.....as long as I have a carbonated beverage.....I'm usually okay......but again.....rough, textured foods.....no.....not even carbonation helps. I'll mention the high blood pressure rx. to my doctor......thanks for that info. If you have difficulty understanding the situation......maybe you can understand why I could never get help for it......until Dr. Woo........I sent an email to him.....told him he was a hero to me, and I could not thank him enough.......he was kind enough to respond......only 68% of PN patients with cough improved......I told him to add me to the group.......I still have the cough.....but it is less severe and less frequent. There are also a couple of case studies that we found when we googled.....they also reference Dr. Woo. I don't know what else to tell you.....neuropathy damages the nerves....and in addition to my periperal nerves....it also got to the neves in my throat....not with pain, but hypersensitivity......please reference Dr. Woo's report......then I'd appreciate hearing what you thinnk....you sound very knowledgable and I'd like to hear you opinion of his study and trials.........thank you.
*Abigail is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 03:42 PM #9
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
10 yr Member
*Abigail *Abigail is offline
Junior Member
 
Join Date: Apr 2008
Location: New Hampshire
Posts: 28
My Mood: New to Community w/info if you have nerve damage to throat.
10 yr Member
Default

MrsD......I'm a little slow sometimes.....but in re-reading your posts, and noticing the "doubtful" comment....as well as some of the comments and questions you've stated in response to me......I think you are questioning the truthfulness of what I've posted. I thought this site would be good for me, and that maybe I could help others too.....but I've put up with enough "doubt" for the past 18 years......don't need anymore......this is one of the reports from Dr. Woo, I'm going to type it word for word from the report, then I think I'm done posting here:

"Chronic cough as a sign of laryngeal sensory neuropathy: diagnosis and treatment:

Department of Otolaryngology-Head and Neck Surgery, The Grabscheid Voice Center, Mount Sinai Medical Center, One Gustave L. Levy Place, New York, NY 10029, USA

Chronic cough is often attributed to reflux, postnasal drip, or ashtma. We present 28 patients who had chronic cough or throat-clearing as a manisfestation of sensory neuropathy involving the superior or recurrent laryngeal nerve. They had been identified as having sudden-onset cough, laryngospasm, or throat-clearing after viral illness, surgery, or an unknown trigger. Cough and laryngospasm were the most common complaints. Seventy-one percent of the patients had concomitant superior laryngeal nerve or recurrent laryngeal nerve mortor neuropatahy documented by laryngeal electromygography or videostroboscopy. Afte a negative workup for reflux, asthma, or postnasal drip, these patients were treated with gabapenten at 100 to 900 mg/d. Symtomatic relief was achieved in 68% of the patients. Sensory neuropathy of the recurrent laryngeal nerve or superior laryngeal nerve should be considered in the workup for chronic cough or larynx irritability. Symptomatic management of patients with cough and laryngospasm due to a suspected sensory neuropathy may include the use of antiseizure medications such as gabapentin.

PMID: 15895778 (PubMed-indexed for MEDLINE) LeeB, Woo P"

My coughing was horrific from the onset......my neuropathy was diagnosed as viral sensory peripheral neuropathy.....and I think, just like the permanent nerve damage to my extremities......so will I continue to cough....because of going so long without treatment, but as I said earlier the gabapentin offers some relief. Thank you......and I'm sorry at appearing doubtful.
*Abigail is offline   Reply With QuoteReply With Quote
Old 04-13-2008, 04:03 PM #10
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
Lightbulb well...

If numbness would help I think you should be using Lidocaine gargles before eating.

Many times things that affect people, are very unique. Trying to find a medical report to confirm your experience can be a dunning job, and waste time while you suffer. Sometimes only 1 or 2 or a handful of reports appear for decades!

Treating the problem for what it is, may be more practical.

Chronic sinusitis, with no history of allergy? That is unusual. Sinus drainage down the throat may constantly irritate tissue there.
You can get chronic sinus infections from dying teeth in the upper jaw.
The nerves may be injured from a filling, and then slowly die and infect the sinus above. (this happened to me once--- it was awful and took 4 yrs to diagnose)
The back molar never hurt itself, just drained bacteria into the sinus above, and when I had a case of lockjaw from the irritation of the jaw muscles, then the series of specialists began. Even with 3 specialists no definite diagnosis was available to me, so they decided to root canal the devil. That fixed it.. after 4 weeks of suffering from the root canal...it was a nightmare.

I've been on this and its cousin board for over 10 yrs. Not one person has come on with a situation similar to yours. The closest was a phrenic nerve injury from surgery (affecting the diaphram). That is why you need to look at your problem from outside the box. Ask your doctor would botox relax those muscles? Can lidocaine numb you enough so you can eat safely? Things like that. Would inhaled steroids work? (these have less side effects than oral steroids).

Here is an article I found. There is no Lee Woo. His name is Peak Woo MD.
http://www.wchstv.com/newsroom/healt...ife/2234.shtml
The other doctor in the study is Dr. Bryant Lee MD.
And according to their study, relief came in months for most of the patients.
That is ...those people healed up. Why you are NOT healing should be explored.. constant inflammation, infection, whatever, is keeping you uncomfortable.

The word neuropathy means damaged nerves. They can be anywhere.
If your nerves were severely damaged, you would not be able to talk, swallow at all.

We have many posts here that discuss how to help our nerves heal. There are two right here on page one to read.

One very common cause of chronic cough is ACE inhibitor use. These drugs are used for blood pressure and raise Bradykinin levels. Bradykinin elevation :
http://www.med.ucla.edu/modules/wfse...?articleid=135
This article explains bradykinin a bit... it is a very complex biochemical thing.
http://en.wikipedia.org/wiki/Bradykinin
But it mentions bromelain, as a bradykinin inhibitor as well as aloe, and red wine (you can by the polyphenols in capsule form without alcohol).
It might be worth a try to control that cough that way.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Nerve Damage from TOS or Rib Resection Surgery dealingwithtos Thoracic Outlet Syndrome 22 05-09-2009 11:49 AM
A worse night's sleep, due to nerve damage BobbyB ALS News & Research 0 03-25-2008 08:37 AM
Tarlov cyst or Pudendal Nerve Damage GJZH Tarlov Cyst 0 08-28-2007 11:58 PM
nerve damage from surgerys?? anybody?? geeja New Member Introductions 6 06-29-2007 01:02 AM


All times are GMT -5. The time now is 12:59 AM.

Powered by vBulletin • Copyright ©2000 - 2021, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2021 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.