I'm so discouraged

General General TN & GPN (Old Site)
1

I have been fighting with this "disorder" for three years now. I tried all the meds and each one helped for a little while and then I was told I needed more and more and more since the pain would come back each time.

I live about 5 minutes away from UCSD and Dr. John Alksne (contributer to Striking Back) did an MVD surgery last January. As a complication of surgery I stroked out. It was a long battle but I made it back and then I developed an uncontrollable cough.

Now this isn't a normal cough. This is a cough that lasts for up to 1/2 hour at a time. I vomit, my ribs are so sore they can't be touched, I can't breathe and have strider sounds...it happens like our pain happens. No rhyme or reason, no way to tell if it's going to happen or not. The ENT finally has given me Botox in my vocal chords and that helps. But because it paralyzes my vocal chords and swallowing muscles I choke alot and have no voice. But it is better than it was.

To top that all off I now have the GN pain back. Not as severe, but it's back and it hurts enough. I'm talking to Dr. Alksne about it and I had an MRI done two days ago.

But it hurts. And I'm tired of it. And my husband left me for drugs. And I'm sad. And tired. And I have to work and it's so hard when your tired and your ribs hurt and your head hurts from coughing so hard at night. And when you feel the pain in your ear and your jaw and the burning starts in your tongue and throat. You all know how it feels.

It's just one of those days I guess...

2

Oh Sandee, I am so sorry. I hope today is a better day for you. If your husband left you for drugs, maybe that is not such a bad thing? When I have a lot of pain, and I know this is dumb, but I try to get involved with someone else or something else.

That helps me. And I pray to St. Blaze, Saint of throats. Hugs and prayers that today is better.

Judy

3

Sandee I sympathise completely and have to say despite your situation being awful I admire your strength to have fought this for the past 3 years and endure the treatments that you have. I'm also going to say some prayers for you to find some more inner strength to carry on fighting and pray for "good" days for you.

Amanda

xx

4

So sorry to read your news Sandee. I can understand you feeling so discouraged. Everything seems to have compounded.

Can I suggest that you consider looking for a Traditional Chinses Medicine acupuncturist and try acupuncture. It really helps manad GPN and it may also help your other problem. You would need to have a few treatments close together in order to results to see if it beneficial. If it is, once under control you will only need maintenance treatments.


I hope things pick up for you soon.

5

Sandee, I'm so very sorry for your pain and sadness. Ours is one of the seemingly increasingly conditions. so many people haven't heard dof it. It's hard to explain when talking is so painful. I have an appointment with a neuro-surgeon in May and am terrified. the pain is so severe after taking so much medication. it has affected my balance, made me very sleepy and seems to have made me a bit "muddled" - not a very good way of describing it. wishing you better days ahead. Hopeful.

6

Dear Sandee

I feel so sorry for what you are going through. It seems as if everything has gone from bad to worse for you.

Please don't give up, keep us all posted on how you are doing.

With love,

Boppy

7

I'm so sorry Sandee, I too had the surgery back in October, had a lot of complications that my neurosurgeon didn't want to hear about it so he just past the buck to another neurologist that specializes in headaches. I'm also having PT every week related to the surgery. My left vocal cord is permanently paralyzed and had to get collagen injection in Dec referred from my physical therapist not my neurosurgeon. Then 2 weeks ago started having throat pain on left side, left ear pain, and left arm pain and weakness. Went to my original neurologist that discovered the GPN and basically told me there was nothing left they could do but refer me to a pain clinic for management. I'm also going to have nerve conduction studies done this week to see why my left arm is now weak and having pain and numbness. I am too feeling the same way...depressed. I had such high hopes that the surgery was going to solve all the issues. I'm not giving up though...my original neurologist may but I am not. Go to a pain clinic they can manage your pain. It has helped me. keep me posted on how you're doing. I will keep you in my thoughts and prayers.

8

Oh thank goodness...i was wondering if anyone was out there. And the tears are silently flowing out of my eyes as I read your compassionate, encouraging responses.

No, the husband leaving is not a bad thing...at least I have pain meds when I need them now. Just another "not the way it should be" thing in this life of ours. And helping others is NEVER dumb! It truly does help take the focus off of "you". It's just sometimes its to hard to do even do that.

I have not tried acupuncture, but with a $2500 deductible and out of pocket of $4000 -keeping my HSA funded for meds is about the best I can do. But I am open to it .

Thank you again - I pray I may be there to encourage you someday as you did me today. :)

9

Oh man we all have a challenging journey don't we.? I feel for everyone.. Sandee I get it some days it feels like more than we can handle. For me the motivator and life saver has been focusing most of my thoughts on creative projects and helping others when our brain is on the pain it just creates a louder and louder loop. My journey has been 10 years thus far. I will tell you that you can retrain your brain to pay attention to other things. The first step is to make sure you are clear about what you want out of life. next have good support people to talk to and people to help you focus on what is important to you. My family does this for me all the time on a bad pain day I too can get very discouraged and then my mother or husband will get me talking about the latest student, art project or song I am writing and before you know it I start to literally feel better. We all must continue seeking medical solutions but the technology may not be there just yet in the mean time seek out good people, good beautiful things to focus on and good faith you will surely get through this. I am praying for you.

10

Sandee, do not get discouraged and surround yourself with negetive thoughts. Think good and positive. I was too diagnosed with GNP July 2012. It came as shock!!! and from than every day it is getting worst. I went to so many hospitals. Tried different ENTs & Neuro but of no use. Pain is constant - All day - Mouth, upper pallate, Ear, Head, toungue, and arm. BUT I try to keep myself busy with work. I'm 52 years. Just keep praying and think all that good happened to you. I take neurontin 400mg X 4 daily. It is not much helping but till now Drs. did not ask me to do any operation. My Brain & Cervical MRI was done which is fine.

Can anyone tell me what other tests are recommened to know how much damage is done and where ?

Every time I go to ENT and open my mouth and tell him regarding my pain - he looks in and says there is nothing, everything looks fine!!! Neuro - same. Wht to do? I don't know who can give me the answer...

This is life and we have to continue. Just go on, pray to God and try to be happy. Make yourself happy talking to your friends, watching humerous TV programs, read books, go for walk, etc. there are lot of things that you can do to change your mind....BUT do not get discouraged EVER! Do not give up ever! the life is beautiful and precious, it is just that rough patch and I hope it will get better, I'll also pray for you...take care....

11

Sandee, I am so sorry you are discouraged :( You are not alone in this suffering.....we may be in virtual internet land...but we are all here for you and we all understand. Thank you for sharing your warrior story with us.....I just saw Dr. Alksyne for the first time last week....he said I need surgery too. Do you feel like he was a competent doctor? Was the stroke just one of the many risks we undertake or would you have gone another route? It's so hard to know who to trust and where to go....you are in my prayers tonight....I hope tomorrow is a better day for you...

12

Hi Jill,

I would trust Dr. Alksne with the surgery. Absolutely. He also has a team of doctors that work with him and they are wonderful as well. Dr. Alksne is one of those rare doctors who has the technical ability combined with the most compassionate bedside manner.

The stroke was just an unfortunate side effect. It wasn't his fault. I don't know what other route I would have taken. This was the last thing to do in all the many things I tried. Glycerol injection, medications of all kinds, doctors of all kinds, really this was the last resort.

I think it would have worked...it did work for a short amount of time. But no one can tell me coughing as hard as I do, day in and day out hasn't had an effect on the surgery outcome. But who knows.

Thank you everyone for your prayers...I covet them and need them. I shall pray for all of you as well. Thank you, thank you, thank you for reaching out to me. Sandee

13

Thank you from the bottom of my heart Sandee for your advice.....hang in there today.....are you on the facebook group yet called GPN really sucks? I love that group of people...helps to be able to quickly ask a question too,

14

Sandee, You are probably already aware of these afterthoughts, but I wanted to share just in case, sometimes the simple things are not considered when we are in this much discomfort and frustration:
To minimize coughing:
Sip water or clear liquids (tea, bouillon) ALL day to keep your mucous membranes moist.
Avoid dairy products, to minimize secretion build up in throat
Reduce intake of salt as it causes swelling
Avoid straining your throat (lifting heavy items, whispering, talking over background noise)
Use a cool mist or hot steam vaporizer
Avoid alcohol
Try not to clear your throat, instead sip water or make an "h" sound instead (doesn't work for me, I sip instead)

Hope this is helpful. Cyber hugs~

15

Hi Sandee
I am sorry to read that you hurt so much and are sad and tired and that you experienced complications from the surgery. I have GPN and TN so I get you on the pain. I am partnerless as well. But I sure don’t have that awful cough you are describing. I did have pneumonia a long time ago and it sounds similar but I did not have the “add ones” of the neuralgias then, so can only imagine how hellish it is.
Having no voice is a strange human drama. I find myself caught between two natural drives all the time: one is to talk and be social with people, the other is to keep my mouth firmly closed to avoid trigger further pain. It is a terrible predicament. And not one that gets a lot of understanding.
But I find that really bad days are invariably followed by some good ones. I pray yours are on the way.

16

Karen do you have TN bilaterally? I have it bilaterally and now GN, bilateral pains. Wondering if anyone else has this.

17

Hi ladies, I get both TN and GPN. My TN unilateral and on opposite side to my GPN. With MS most people have unilateral. It isconsidered rare to have it bilaterally. I actually have MS.

Can I ask Funtsie and Karen have you seen neurologists? One of the MOST important things we must all do is be investigated fully by means of MRI's, CAT scans etc., to rule out possible causes of GPN, and also with TN.

TN is often associated with MS (but as mentioned is more commonly unilateral) so if you were to see a neurologist they would be able to screen you and tell you whether they feel you have MS. If you did it may explain GPN as well, as that can be a very rare symptom of GPN.

However, there are many other possible causes that need to be ruled out. Some can be corrected, some can't but it's important to check them out as once you know what you don't have, or do have, or possibly have, you can then research and learn way to better manage it.

Other conditions that could also cause these things are Eagles syndrome, Sjogrens Syndrome, enlarged lymph nodes, tumours, damage to nerve endings through surgical procedures etc. So it is imperative that all people get thoroughly checked out and a GP is not qualifed to be doing this.

GP's are your number one person in the medical care professional team but they are not qualified to diagnose you or really decide on treatment for you in these situations, and in some cases could actually cause more problems if underlying causes have not been checked. They can prescribe you treatment in the interim, which in some cases may well turn out to be your permanent treatment, but they should never decide to diagnose things outside their areas of medical expertise.

They can suggest it may be something and this sometimes is in your referral. A good GP will do whatever tests they can and then refer you on armed with test results. But as mentioned they can only take it so far and are not specialists, they are just general practictioners.

My advice is get a referral and see a neurologist and start getting things ruled out. A neurologist should be your first starting point. Most people have seen ENT specialist and obtained the GPN diagnosis, but it is moreso the neurologist that can effectively screen and rule out certain causes. Also it pays to get a second opinion in some cases.

Kaz

18

Hi Sandee, I am not sure where you are located. I am in Australia and here we have university clinics that offer very cheap treatment for acupuncture and Chinese Medicine.

I would suggest that you maybe google courses in Traditional Chinese Medicine and see what comes up for your city. Then you can go to their webiste and look into where their clinics are. Here is Australia the clinics are affordable. Eg: Private acupuncture treatment is approx. $60+. In the clinic initial treatment $30, then $20 per treatment after that, and cheaper again if the person is on a pension/concession etc.

In the clinics you get really good treatment as you are attended to by senior students and other students observe and help, but the senior students are always supervised (well in Aust they are) by qualified doctors/practitioners with many years experience. Also with treatment the sessions tend to be as long as required, unlike in private practise where they need to have you in and out within a given period of time. So it is well worth investigating where courses are run and find those clinic ;-)

19

Dearest Sandee,

I read your post this morning and thought about you today. I want to hug you and say, “I know and understand your hurt.” I can’t hug you, but I’m deeply sorry for pain I’m well familiar with and I empathize with you. I have compassion and am in the pit with you tonight, sharing your pain. Some may disagree, but for me, I still search every avenue, but find any hope I may have in Jesus freeing all of us from this suffering whether through treatments, a cure, or a miracle.

I just found out I do have EAGLE’S syndrome after many years. I’m not convinced this is causing my GN, but at such time, I may look into it more. FYI, after asking, a Neurologist who never heard of Eagle’s ordered a CT Scan with contrast of the soft tissues of my neck AND an ENT ordered a CT w/o contrast of my sinus as I had new cheek pain/numb area and a different kind of raw soreness in ear to add to GN. ENT was looking for sinus issues. Both scans impressions said elongated and calcified STYLOID. I have not seen the Neuro as he didn’t ever have an EAGLE’S patient and said I was an orphan. This is true in his practice. . The ENT offered a lidocaine shot into styloid one day to see if symptoms subside. I’m not sure he has much experience with Eagle’s either and was reluctant to pursue a scan, but did. I had asked many Docs about this before and all said Eagle’s impossible and MRI doesn’t show it. So, heed the advice of others to be sure. Again, I am waiting to sense God’s movement on everything with the new information along with finding out the cheek pain is a tori bone growth breaking through my gum and surgery is recommended. God bless you and keep you close and may you keep your eyes upward, even if the tears are flowing. Praying as I close, Kathy

20

Hi Kaz
I do have a neurologist now I like and am seeing her again in two weeks. Recently had third MRI.

I have had the same GP since 1999. She is excellent regards sending me to specialists but it has been a very circuitous route and she really has no idea how I should manage my meds.

I was diagnosed with fibromyalgia in 1995 and more or less managed it until a little over three years ago when I woke up with pulsing/ piercing ear pain in the middle of the night. I have seen two ENTs, had a barium swallow, seen an immunologist, taken god knows how many courses of antibiotics, had a gamma camera scan of my whole spine, two head cts, a chest X-ray, god-knows-what-else and now three MRIs. I’ve also been to the local pain clinic a couple of years ago and had trigger point injects which, in my opinion, made things worse. I tried lyrica with no results. Then carbamazepine which was bad news.

Now I am being seen in the Vancouver Pain Clinic but it is quite a journey for me to get there. MS has been brought up but I don’t have it. I will be 59 in the spring.

Two years ago both my GP and I figured it was GPN. She had never heard of it but had been discussing my case with an internist. I came up with same after an Internet search. That’s when she sent me to the first neurologist.

Going to a neurologist with the fibromyalgia tag probably delayed real diagnosis. He refuted GPN and said it was fibromyalgia “gone to my head”. He prescribed cymbalta and tramacet and I gradually became very ill and came down with serotonin syndrome and came off the cymbalta promptly.

GP sent me to a new neurologist over in Vancouver. With her help I was able to draw a pattern of the pain. She sent me for another MRI, FLAIR. This came back positive for superior cerelellar artery looping around Trigeminal nerve making contact in several places. She prescribed gabapentin and referred me to a neuro surgeon.

That was almost a year ago. This summer I finally got into the Vancouver Pain clinic and after thorough examination was finally diagnosed GPN (which is what I have thought all along) as well as TN and Fibromyalgia and another MRI ordered, this time FIESTA as well as others. Gabapentin was upped.

I am now experiencing symptoms on right side now as well, but nothing like the horror show on the left!

It took from summer to January to finally get that MRI and I had to squawk for it. Our system here in Canada is slow.

little by little I have shrunk into my house. Old friends have hung in, but they do not live nearby. A lot of the people who do live nearby have been so confused by my illness. In moments when I am relatively pain free or have been so focused on a project I think, OH! It’s gone, I begin to doubt the whole thing, then I get a zinger or searing strip of pain and my god, it’s like the joke is on me!

It’s good to find people here.


Kaz said:

Hi ladies, I get both TN and GPN. My TN unilateral and on opposite side to my GPN. With MS most people have unilateral. It isconsidered rare to have it bilaterally. I actually have MS.

Can I ask Funtsie and Karen have you seen neurologists? One of the MOST important things we must all do is be investigated fully by means of MRI's, CAT scans etc., to rule out possible causes of GPN, and also with TN.

TN is often associated with MS (but as mentioned is more commonly unilateral) so if you were to see a neurologist they would be able to screen you and tell you whether they feel you have MS. If you did it may explain GPN as well, as that can be a very rare symptom of GPN.

However, there are many other possible causes that need to be ruled out. Some can be corrected, some can't but it's important to check them out as once you know what you don't have, or do have, or possibly have, you can then research and learn way to better manage it.

Other conditions that could also cause these things are Eagles syndrome, Sjogrens Syndrome, enlarged lymph nodes, tumours, damage to nerve endings through surgical procedures etc. So it is imperative that all people get thoroughly checked out and a GP is not qualifed to be doing this.

GP's are your number one person in the medical care professional team but they are not qualified to diagnose you or really decide on treatment for you in these situations, and in some cases could actually cause more problems if underlying causes have not been checked. They can prescribe you treatment in the interim, which in some cases may well turn out to be your permanent treatment, but they should never decide to diagnose things outside their areas of medical expertise.

They can suggest it may be something and this sometimes is in your referral. A good GP will do whatever tests they can and then refer you on armed with test results. But as mentioned they can only take it so far and are not specialists, they are just general practictioners.

My advice is get a referral and see a neurologist and start getting things ruled out. A neurologist should be your first starting point. Most people have seen ENT specialist and obtained the GPN diagnosis, but it is moreso the neurologist that can effectively screen and rule out certain causes. Also it pays to get a second opinion in some cases.

Kaz