Hi Im Chris - My Story

My GPN is on the right side of my throat about half way between my chest and chin. I was diagnoed 5 years ago and the last week has been the worst week of my life. I have not ate food in a week, just sip on water, woke about many times at night with sharp pains. My pain is different severitys:

Small twinges - can feel it coming on.

Stabbing/Shocking feeling - this is happening about 1/2 the time I swallow anything

Shocks turn into spasms that last 10-30 seconds then when it over feels like my throat is burnt. I am getting these about 10 times a day. HORRIBLE feeling

An extreme spasm spell. If I get phlyum stuck in my throat, yell or have a severe cough I on occasion get an EXTREME spasm that literally feels like your being tased, lasts 10-30 secs. So severe that you couldnt possibly stay conseous if this was to last more then a couple mins. I can literally hear something sizzling in my neck.

I have gone to the ER this week because I cant get into my Neoroligist. They dont do anything but up my medicine. Currently they have me on Gabapyntin (3600mg daily), steroids and perocet. None of this has done a thing. Now everything sets it off - talking, swallowing, breathing heavy, even does it when Im doing any of these things just not as much.

I have an appt finally with my Neurolgist Monday but not sure I can get through this weekend like this. Does anyone have ANY suggestions? I am looking so forward to talking with peers that have these same symptoms. I try to explain these symptoms to friends, family and the medical community. As we all know they look at us with a funny look, not fully understanding.

Your friend,

Chris Bragaw

All I can say is I know exactly how you feel. I really don’t have any further suggestions but will tell you I had MVD on Monday and haven’t had an “episode” since! Prayers are with you!!

I also had a MVD on nerves 5,9 and 10 on Feb. 20th of this year by Dr Stephen Haines in Minneapolis, Mn, U. Of Mn. Fairview Hospital and have been painfree since. He is very experienced with this type of surgery and trained under Dr. Peter Jannetta. Research your surgeons well. How many procedures done every year, complication rates, etc. If you find the qualified experienced physicians, they will understand and know exactly what you are talking about. My pain felt like a dagger in my throat. I was unable to talk or swallow but was controlled on a combo of half tegretal and half trileptal until my sodium levels dropped too low to continue any more increases. Thats when I knew that I would need surgery and was only 13 months after the pain started, initially with trigeminal pain in my lower molar. My diagnosis was questionable as it is very rare to have more than 1 nerve involved. Not every surgeon can operate in the posterior fossa, and the ones that can do the MVD on the trigeminal are not confident to go deeper to address the GN. Merry Christmas. My thoughts are with you, Chris.

I feel your pain. What you describe is very much my story. This is my third bout. My neurologist prescribes triliptal. I have also discovered 50 grams of zinc taken twice a day is a great help. I've tried to cut down on the zinc for it is twice the recommended dose but the stabbing pain comes back with a vengance. It is now and forever after two tablets a day of zinc. It took about a week for it to take effect again. I've been pain free now since late Sept. and doc last week cut the dosage in half of the anti-convulsive drug trileptal. He will keep me on that until June at least. I've been on that for a little over a yr. So far, so good!-------Boanne

Hi Kaitmanda,

Good to hear that you are pain free now.

Which doctor had performed the surgery over you and which city you stay in?


Kaitmanda said:

All I can say is I know exactly how you feel. I really don't have any further suggestions but will tell you I had MVD on Monday and haven't had an "episode" since! Prayers are with you!!

Hi chris

I am so sorry for your suffering. I to am going through the same. I am getting relieve from a anti seizure med. starts with a CA It makes me feel weird but I will take that over the pain. Talking over a whisper was setting off the big attacks for me. the doc. gave me prescription strength Lidocaine gel I put it on my finger and then stick it around the tonsil area and it helps.

My prayers are with you hang in there.

any dood specialists in florida or nyc.

Sorry you are having such pain Chris if you are taking Carbitrol and still having attacks talk to your neuro. They had me on a very high dose but it did not prevent my attacks. I sure hope they can find somting to help you with your pain.

yon need meds, there are several. topomax, trilleptel. and others.

Have you had a brain MRI. If and when you get one go see a Neurosurgeon who has experience with the condition and has actually done decompression surgeries. With all do respect to neurologists, they are not very familiar with GPN and will always suggest more or different medications.

I myself am a physician and surgeon. I believe you must be speaking to the right people to get the right answers. You know what it is but you need to find out why it is a develop a plan.