[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.

[*Abigail]

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]

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.

[HeyJoe]

i have reread Mrs. D's posts. They appear to me to be questions and suggestions from someone who is trying to help you , as she helps so many people here, not doubt you. I think you are way out of line.

[mrsD]

Well, I use that as a pun from my other screen name which appears in
my signature.

What I am mostly doubtful of is the traditional medical community who
allows people to suffer as you have. Who ignores them during surgical procedures and fails to help them eat safely.

Just so you know, I was researching your post when you slipped in there before me. I had a hard time finding the paper, because the names threw me off. This forum terminates your posting time, if you take a long time in making the post. I lost my ID and had to resign in and almost lost what I had done before. Otherwise I would have posted before your last one.

One thing about the peripheral nervous system that even doctors do agree on is that peripheral nerves can and do heal. They take time, and also need a little boost from us.

I assume you came here to learn and see what others think.
That is what all of us are here for.

The unfortunate patients with hereditary or chronic demyelinating neuropathies, do not heal. Those are progressive, and
you have not indicated that yours is progressing and getting worse. So there is still hope for you to improve further.

[shiney sue]

Yes but Joe,we know Mrs d has helped so many here but Lucky is new
and may not. Even Sue learned a few new things on this and honest
I;m so worried about every rx a Dr. hands me I try to read the side effects
or call the Pharmacist..Most Drs. will write a script and have no idea
what goes with what your taking ,when a Dr. takes a min.to look it up
I'm thrilled..I have been taking water pills for years as long as I was taking
Potassium I was young and working,rasing 3 kids,but no I didn't have
high blood pressure I had fluide in my ears,I didn't get dizzy that's all
I cared about. But i'm allergic to Sulfur now this goes on a list to fuss with my family Dr.

Mrs d brought up Botox both my Uncle and oldest brother just had this
done. They both went to neuro's, my neuro was kind enough to explain
it me. When you mentioned pain behind the ears,is your mouth dry or
do you have to drink in order to swallow the food. I have Sjogren sy
my throat gets so dry,I have to ve carefull about dry throat,and I coughed
a lot and choked it wear's you out..A lot of water and sugar free candy
helped me and gaptopril seems to help. I was glad you wrote.

Look this is a compliment to Mrs d she's not a sweet taker like me,her mind
goes 100 miles a hr. she throws out what she feels may or may not help.
You lucky like so many of us have had to deal with PN and cancer ect.
But we all know 1 thing you have been tossed around by the medical
field. I worked with Dr.s for 25 yrs. most seem to want to outdo each
other. When you gave that report to the Dr. she just didn't want to
see it ,she or he was only into the fact they didn't do it. We have
pain ,buring tingling and on and on,I am of the people you can get PN
anywhere on our bodies,because I don't believe enough is know,neuro's
are odd,because Why would you pick a flield of I don;t know after
standard tests are taken.

You have a right to loose your temper,we all do,There are a lot of us
on disiabity. Come back if you want,I for one hope you do,we are a good support group,and I am sorry for one you got upset,you talked to
Kemb who has been on ensure and baby food for 6 yrs . I just did that
for six weeks. They talked me out of doing bodily harm ha.Your welcome
to pm anyone.. Hey Joe was doing what he always does cares..
Hugs to all oh boy my finger is hurting. Sue

[mrsD]

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.

[mrsD]

I went back and reread the original post: This last comment stood out for me:

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.

The only treatments for acute onset PN (like with Guillain Barre Syndrome)
is plasmapharesis, and this is rarely offered to patients without its specific
paralytic progression.
If autoimmune markers are found in the blood and spinal fluid, IVIG may be tried.

But for all others, there is NO treatment for PN. There are drugs used for symptom relief, but they do nothing for the process. Gabapentin does not heal, it is symptomatic only.
So your doctors dropped the ball, and did not do further testing?
If you haven't had autoimmune markers done, it is never too late for that.

Some drugs actually cause PN. Antibiotics have a nasty track record in that regard. Nitrofurantoin (bladder infections), Cipro and Levaquin, and Metronidazole (Flagyl) are big culprits in this area. Some people react with nerve damage to others Sulfonamides (oral), streptomycin (injection only) and the aminoglycosides gentamycin and amikacin (injectable only). You were using antibiotics for that sinus infection, and if you continue, with those in this list, you face more risk PN wise.

A sudden full body attack may not be PN at all...it may be RSD. We have some posters here with experience in full body RSD.
http://neurotalk.psychcentral.com/forum21.html
I suggest you put a post up over there, and ask them.

The only known "treatments" for non-autoimmune PN are life style changes and supplements.
Life style includes control of prediabetes (insulin resistance), and evaluation for gluten intolerance. Some other foods can also cause allergy, but gluten from wheat and rye have the most research behind them.
And certain nutrients have been shown to help. You need to know your B12 level, to see if that is your problem. And I have listed other suggestions on this thread:
http://neurotalk.psychcentral.com/thread43355.html

Before we had things like gabapentin, the main treatment for PN was thiamine.
In fact it remains a TREATMENT, but doctors stopped using it, when the new highly advertised gabapentin came out. Some people have errors in metabolism --the aldehyde dehyrogenase pathway-- and taking thiamine helps them.(The antibiotic Flagyl does its damage thru this pathway) The new form benfotiamine has many positive papers backing it now. Gabapentin does not change anything at the tissue level. It only blocks nerve signals.

There is some new research on the fibro board, about glutamate. It is being found that high glutamate in certain brain areas increase pain perception in people prone to fibromyalgia. I think we will find glutamate is a big player for all chronic pain patients in the future. So you will want to avoid high glutamate containing foods --MSG, just as a caution. MSG is very neurostimulating and problematic anyway.

Another thing to look at is GERD. Chronic GERD can damage the larynx and associated structures.
Another is thyroid disease... when I had my goiter I had alot pressure on the laryngeal nerve, which caused hoarsness and
choking at night while sleeping. While that is better now since the goiter went down, I still have fatigue of the larynx to some
extent. So any enlargement of the thyroid or nodule or tumor of the parathyroids may affect this nerve.