HI Everyone

[Shelbyrhay]

Hi I had a few questions.
So I just got diagnosed with O.N. and my main symptoms are stiff neck, eye pain, pounding headaches in the back of my head and severe burning and sensitivity on my scalp. I can't shower easily because it hurts the scalp. Anyway, I am on Neurotin and I am wondering if anyone else has taken this? It works really well for a bit and then the burning comes back. I had steriod shots on Tuesday but oddly it moved my burning to the top of my head, a place it hadn't been before and numbed the nerves pretty well on the back of my head.
My symptoms of this Neurotin is severe mood swings(think crying or happiness) and I lose my thought so fast. Talking in a complete sentence without forgetting is a big thing.
Does anyone else have feedback on this drug?

[EE03]

I've taken it before, but for another condition I have to deal with. I can relate to your side effects from the med as I had a lot of trouble with maintaining a train of thought and it made me pretty dumb and sleepy. I know I had others, but I'd have to look them up. If the burning ON pain is coming back, its because the med is probably out of your system. How often are you taking it?

[Shelbyrhay]

Thanks for your response. I know that the meds go out of your system pretty quick with Neurotin. My Neurologist wanted me on this first because he is pretty careful and said this one has more history to it. I don't know. We are all at the hands of our physician.
The steriod shots have gotten out of my head now. Just a few days of relief from the scalp pain but not worth it in respect to the fact that my skin on my face is burning like mad, and the injection sites are still painful.

[EE03]

The steroid shots I had, a series of two, did calm the nerves down a bit, but thats gone now and I'm getting more pain like before I started having the blocks. The half life of neurontin is 5-7 hours, so check with your neurologist and explain that the pain returns prior to your next dose.

[Shelbyrhay]

well, my head just went nuts, I couldn't even move my neck. i went to the doctor on emergency and he put some acupuncture points into my earlobes. Well, they helped tremendously! I can actually move. I still have some cloudy pain but its not nearly as bad. Before it felt like someone was smashing my cranium with their hands or something. now it is more like a normal headach.
I am still taking the meds, but I do feel better.

[Shelbyrhay]

Well, Saturday was the breaking point for me and landed in the ER. I literally thought this is it, I'm dying. i'm having a stroke or something.
Anyway, they pumped me with an IV of Valium for my muscles. I couldn't move my neck and my head felt like it was going to explode and pour out of my ears. It was the worst by far.
Anyway, the ER doctor prescribed valium for my muscles plus a new drug, indometrhacin, which is usually used for gout. He said that since the prednisone helped but I can't take it continually as well as I can't stay on Motrin because it caused a serious rebound effect for me, this might be the trick.

So now my meds are as follows...geez. I feel like a walking drug store.
6 am
300mg Neurotin
20 mg Baclofen
1 Indomethacin
1030 am
300 mg Neurotin
noon
20 mg baclofen
1 Indomethacin
230 pm
300 mg Neurotin
6pm
1 Indomethacin
600 mg Neurotin
20 mg Baclofen
8pm
10 mg Valium

Now I am telling you all this because it seems to be effective so far.
i do have the burning on the back of my scalp but not too bad, its managable. My neck is feeling much better since starting the valium
I cannot tolerate 600 mg Neurotin at noon so breaking it up helps alot.
The Indomethacin seems to reduce the pressure in my head.
The pharamacist was awesome and came out and talked about all 4 meds and how she was shocked at the mix because it came from 3 different doctors but said together this was an awesome mix and not one that is usual. All four work differently but can target all the issues that could causing the Occipital Neurolgia.

Perhaps this could work for some of you guys? None of them are serious pain killers but are working to target the issue instead of masking the pain. I hope this helps for you guys.

[pono]

good to hear you found relief, help, understanding-- sorry it took a crises but seems going to ER turned out to be Blessing...
hope this combo continues to work for you...

thanks for sharing

[prairiegirl]

My pain specialist asked me to buy a tens machine. I got one and will be trying it over the next week. I will let you know if it helps. It's an OTC thing and she said it can help reset the nerves and recruit the other nerves to help fight pain. Let's hope it's helpful!

If it works, you might want to ask your doc about it. It's "sort of" an alternative medicine thing, even though my specialist perscribed it. Lots of massage & physio therapists use them.

[Beaumont-Rawson]

Hello there! I was just reading your blog and it seems you have been suffering with similar symptoms as myself. I currently have a heavy head, an aching and tight neck and a severe burning scalp (also burning from the back of my head down to my neck). I have been poorly now since beginning of February, been admitted to hospital 3 times and although I haven't actually been diagnosed, my GP believes I have suffered a bad viral infection and have been left with these symptoms. He thinks I have damaged nerves in my head/scalp. I am on nerve blockers which help to some extent but I feel I have no quality of life as I am extremely tired and weepy. It seems it has been a while since you wrote in your blog, does that mean you have had some relief of the pain you were suffering? - I hope so. I need to know that I am going to get better from this awful pain. Do you have any hope for me?
Thank you Michelle (U.K.)

[paininhead]

Well, Saturday was the breaking point for me and landed in the ER. I literally thought this is it, I'm dying. i'm having a stroke or something.
Anyway, they pumped me with an IV of Valium for my muscles. I couldn't move my neck and my head felt like it was going to explode and pour out of my ears. It was the worst by far.
Anyway, the ER doctor prescribed valium for my muscles plus a new drug, indometrhacin, which is usually used for gout. He said that since the prednisone helped but I can't take it continually as well as I can't stay on Motrin because it caused a serious rebound effect for me, this might be the trick.

So now my meds are as follows...geez. I feel like a walking drug store.
6 am
300mg Neurotin
20 mg Baclofen
1 Indomethacin
1030 am
300 mg Neurotin
noon
20 mg baclofen
1 Indomethacin
230 pm
300 mg Neurotin
6pm
1 Indomethacin
600 mg Neurotin
20 mg Baclofen
8pm
10 mg Valium

Now I am telling you all this because it seems to be effective so far.
i do have the burning on the back of my scalp but not too bad, its managable. My neck is feeling much better since starting the valium
I cannot tolerate 600 mg Neurotin at noon so breaking it up helps alot.
The Indomethacin seems to reduce the pressure in my head.
The pharamacist was awesome and came out and talked about all 4 meds and how she was shocked at the mix because it came from 3 different doctors but said together this was an awesome mix and not one that is usual. All four work differently but can target all the issues that could causing the Occipital Neurolgia.

Perhaps this could work for some of you guys? None of them are serious pain killers but are working to target the issue instead of masking the pain. I hope this helps for you guys.

Hi
I too use Nerontin - 7 of the 300mg per day. I have not noticed any inability to think that I did not have prior to using. It certainly helped me with the pain. Before that I was on the highest level of Vicodin & it didn't touch the pain. The Balofen helps how?
I have had nerve blocks, facet nerve block and neuro stim trial. I am out of work since last September & on long term disability at the moment. I have trouble driving the car - vibration seems to trigger the shock pains.
Hope you find relief.
paininhead

[oliverjenniferm@aol.com]

hi, I have suffered from tn and on since 2003 after 6 sinus surgeries and osteomyletis of sinus. I still have chronic sinusitis but it seems to be ok for now. I have tried many drugs and combos. Trileptal, neurontin, lyrica,baclofen,nortipttoline,etc. all caused severe side effects which I could not function with. Memory loss, sleep all day,short term memory loss, forgetting things, not able to find the right words,constipation, slow in completing sentences etc.I have been on sickleave for 2 years, and trying for disability got turned down once. I see 2 pain doctors, one for meds, one for shots, rhizotomies, nerve blocks and trigger point injections.. Currently i take lamictal,naproxen,norco,xanax,restoril,cymbalta and wear a fentanyl patch. The combos have allowed me to function better still have short term memory,sleep a lot, and have trouble with words and sentences. But, i am feeling better. My triggers are changes in barometer and stress. I have had to slow down chose my battles and relax. What I suggest is for all of us suffers to work with doctors and get a pain doctor. Ny neuro has gotten really frustrated so he is limitedin his help to me. My pain doctors have really helped me survive this horror of a disease. At times I get very low cause I can go for weeks with no relief, Then I can usually go to ER and get strong combo of narcodic and anti inflammatories to break the cycle. Or go get trigger point injections. I have not given up trying to get relief and I do push my doctors for help.You need to bestrong and be your own advocate. If you believe a drug is not for you tell the doctors, The combo I use has taken years to tweek and I just raised my lamictal so it is a continual process. Be happy for the good days and live on them. I am never pain free but I am able to use the meds to keep me on the edge so I can function. I have great support from my family and have given up control of my bills to a family member cause I no longer was ableto do them. Ihave a 9 y/o son who keeps me going. I also see a therapist and pt for dealing with chronic pain. The journey ahead of you is long but there are good days and times and hopefully we will find a cure. Thanks for listening, jen

[paininhead]

My pain specialist asked me to buy a tens machine. I got one and will be trying it over the next week. I will let you know if it helps. It's an OTC thing and she said it can help reset the nerves and recruit the other nerves to help fight pain. Let's hope it's helpful!

If it works, you might want to ask your doc about it. It's "sort of" an alternative medicine thing, even though my specialist perscribed it. Lots of massage & physio therapists use them.

Prairiegirl,
How do you use TENS on your head (as the contacts can't be applied to hair) Please advise. Thanks
Paininhead :)

[Kathi49]

Paininhead,

I have had a TENs Unit for years. You are right though...the electrodes can't be placed on the hair. What I did was to place them below the hairline and NEVER DIRECTLY over the spine...to the sides if you will. I also placed them on the trapezius; various areas. The bad thing is I have had two fusions so the electrodes are NEVER to be placed over those areas. Having said that I don't use the TENs Unit anymore for my cervical spine but I DO use it for my lumbar. And again, was told...NEVER DIRECTLY over the spine. They do help to manage the pain. I know some people have said a TENs didn't help. But it worked well for me.

Now, for the best thing ever LOL! My PM just recently ordered a new TENs for me. But along with it he ordered a vest, that was fitted to me and it covers your whole neck and clear down to the coccyx. There are places all over it to attach the electrodes...depending on where you hurt. I LOVE that thing...especially when I have spasms. It is more a muscle stimulator though...not a TENS and I forgot to clarify that. I have not had to take any oral muscle relaxers at all! Anyway, I can put that on, and yes you have to sit or lie down. But I'll tell ya...I ALMOST fall asleep it feels so good. And the best part is...when done, I can do the stretches fully. I compare it to having had deep muscle massage. :)

[Peter B]

Paininhead,


Now, for the best thing ever LOL! My PM just recently ordered a new TENs for me. But along with it he ordered a vest, that was fitted to me and it covers your whole neck and clear down to the coccyx. I compare it to having had deep muscle massage. :)
This has got my attention! Can you provide maker and model, please?

[Kathi49]

Hi Peter,

Actually, I also received a lumbar orthrosis. Anyway, all 3 of these things can be found on the RS Medical website. You will have to drill down on the products menu. And I can get the model numbers to you but give me a bit of time since I just woke up LOL! But I think you will be able to find them on the website with no problem. :)