Help: Need Drug Alternatives for Nerve Pain

Kathryn,
i use Topamax and it works pretty good but is very expensive. I quit taking steroids a few years ago because of the side effects and have many arguments with Doctors about them. I just feel that the danger from them outweighs the GBS/CIDP problems.
good Luck,
LEA

Kathryn,
I use Topamax and it works pretty good but is very expensive. I quit taking steroids a few years ago because of the side effects and have many arguments with Doctors about them. I just feel that the danger from them outweighs the GBS/CIDP problems.
good Luck,
LEA

Kathryn,

I use neurotin and recently added requip. Requip is for restlass legs syndrome but seems to help my legs some, especially at night. I do however, get very nausious with it at the dosing I’m supposed to be taking but I spread it out duringthe day and do ok.

I also recently found DHS foot and leg cream. (ws mentioned on old post) It is designed for diabetic neuropathy. I have just been using it a few days now but seems to work ok. It is over the counter in the diabetic supply section at drug store. I found it at Wal-mart. The first night I barely slept as the pins and needles and heat it caused was terrible but once I started using it, I have more sensation in my feet and less pain in my legs.

Hope this helps and good luck at finding a med perfect for you.

Karen

Hi Kathryn,

If I remember correctly some of the people here take Cymbalta and they say it helped alot. It’s scary to have severe life-threatening reactions to meds

I hope you find the correct med and dosage to bring you a level of comfort.

Take care.

Neurotin is the drug of choice for me….didn’t seem to help at first (1200 dose per day) but once they increased my dose to 3600 per day. I have relatevely no side effects (sometimes it makes me a little drowzy) but all in all it works great for me.

Best of Luck
Stephen

Seems to me they are one and the same. Just think the spelling is off by the letter N.

It is spelled Neurontin

Ok…ok…so I am a poor speller… it’s just in Texas the second n is silent 😉

Hi Kathryn,

I hope your doctors can find a prescription drug to help with your pain. Your drug allergies and additional health problems sure make you a challenging patient.

Ask your diabetes doctor if it is okay for you to take Alpha Lipoic Acid. ALA is used in Europe to fight diabetic neuropathic pain. Sometimes the supplement MSM is helpful with pain too. Fish oil capsules do not fight neuropathic pain but do help with general inflamation. Perhaps additional antioxidants would be helpful – but don’t go overboard on any one such as vitamin C. (PM me if you want the brand name of the antioxidant combination pill I use.) Of course your system is too fragile to experiment with supplements without input from a professional.

Try rubbing in ostrich oil for temporary relief.

Much sympathy in your search for comfort,
Flossie

Hi Kathryn,

I hope your doctors can find a prescription drug to help with your pain. Your drug allergies and additional health problems sure make you a challenging patient.

Ask your diabetes doctor if it is okay for you to take Alpha Lipoic Acid. ALA is used in Europe to fight diabetic neuropathic pain. Sometimes the supplement MSM is helpful with pain too. Fish oil capsules do not fight neuropathic pain but do help with general inflamation. Perhaps additional antioxidants would be helpful – but don’t go overboard on any one such as vitamin C. (PM me if you want the brand name of the antioxidant combination pill I use.) Of course your system is too fragile to experiment with supplements without input from a professional.

Try rubbing in ostrich oil for temporary relief.

Much sympathy in your search for comfort,
Flossie

It must be very disappointing not to be able to cope with Neurontin/Gabapentin. It has been ‘flavour of the month’ with neurologists for dealing with nerve (neuropathic) pain. Lyrica (pregabalin) is the successor or daughter of Gabapentin. Needs smaller doses. Someone told me less side effects for them too. Worth checking out.:rolleyes:

Hi,

You have a lot going on with 2 neuropithies, and everything else. One thing I’ve learned about meds, because I asked multipal docs and pharmasists, is if a person is on say, 2 to whatever, different meds at the same time, and you crushed all those meds up together in one powder mix then despenced it as one, nobody knows what side effects that will produce. Each individual drug says drowsiness, then they can conclude that as a side effect, but what the combo produces as a whole, again, is anyone’s guess. At my onset stage and for the first 7 months, I was on 8 different meds. My mental state was all over the place for some time there. Spent the next two months getting off everything so I could have a clear mind to assess just what meds I do need forsure at this time. I bring this up due to your reactions to drugs. I’m sure the docs, and yourself, fought this one for awhile, and I don’t know how it was determined an individual drug was the culprit when on several. Like a certain ingreadiant in neurontin only, set off a reaction? I’d hate to see such an effective drug as that ruled out so soon. I’d be curious to know some more info on how they determine complications like you are having. You have to discuss the mix of drugs you are on first with the doc, then to the specific ones that you can substitute a different one for the same sympton. A trial and error deal that’s unavoidable for many of us. Finding what works the best takes time, and I found that just making a change after so long trying something, then putting that away and moving on to something else, without wavering or second guessing myself or the doc, was the best approach. It either works or it doesn’t. Neurontin takes at least 3 weeks in the system to be fully effective as a drug, then time to adjust dosage to fit an individuals pain levels. Docs should explain this a bit better so a patient has knowledge that getting pain under control is a tough and time comsumming biz. To give a patient a want, and to hurry the exam you are paying for, docs sometimes will gladly change a med at the slightest hint from the patient, without looking at the big pic. Which this isn’t going away anytime soon, and you need a fix for the problem, not the problem appeased. The big side effect from any drug, in my opinion, is for the most part, you are going to have to trade off something. Then learn to live life adjusting to that tradeoff. Hope you find solutions to your complicated ordeal.

Kathryn,

Neurontin caused weight gain in Frank, it lists that on their info paper and he had Diabetes also, so it was very hard for him to control his weight after a while.

Kathryn,

Argh. I wrote you a PM but the new system ate it. Sigh. I apologise to the rest of the forum for posting a brand name.

My antioxidant combination pill is called “Super 10 Antioxidant” By “Country Life” ([url]www.country-life.com)[/url]. It is available in some health food stores but I purchase mine online.

Remember to be super careful of using supplements with your diabetes and other medications. My friend with diabetes had a dentist prescribe high doses of Vit. C and it really messed her up. Not all health professionals realise how delicate a balance you need to keep.

I am a big pill popper – 10 a day. I believe my body needs a variety of ammunition to fight my CIDP. I hope you are at least taking a good quality multi vitamin. No OTC is going to give you the pain control of a prescription – but a little relief is better than nothing.

Take care,
Flossie

Sorry I couldn’t figure out the PM system. It refused to recognise my log in – after I write the letter. Sigh.

I just posted about Lyrica and how people get on with it. I should of read your post Ken. My specialist thinks it is better than neurontin. I take 150mg twice per day and find I am a bit drowsy. It helps with the pain while I am not doing too much. When I go to work and stand for an hour the pain is back.

Debbie

weight Gain,
I have found that Topamax has decreased my appetite and I actually have lost weight while taking it. It also prevents Migraine headaches and is being marketed for that now. I am not pushing the drug only describing what it did for me. Unfortunatley the Presidents part D won’t pay for it. *#$%^and it is very expensive.
LEA

[QUOTE=2pznapod]Brandy – Why is it that all these nice meds have “weight gain” and “increased appetite” as common side effects? I want one that has “gradual weight loss” instead. :p

I think it is a conspiracy!!![/QUOTE]

Frank’s Primary Care Dr and his Endocrinologist were always on his back for gaining weight and I would try to explain it was the damn meds. The primary Care Dr who knew nothing about GBS told Frank he needed to walk alot.
Yeah right, was Frank’s answer. He told the dumbo Dr that he couldn’t walk far and that he would get exhausted. The only one who was great with Frank was his Neuro, he understood everything that Frank told him.

Conspiracy, probably by the damn drug companies.
Now Lee is going to remind me that “Only Tuesday is Conspiracy Day”:D

Take care

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To All Honest Members of The GBS family,

Do not respond to the thread by faringit578……………………I did, and “curiosity killed the cat” . It is a hoax……..trying to push pornography, or, that is what I think……………maybe I am naive, but, I just wanted to forewarn ya’ll.

Perry

And come to think of it…………”WHERE IS OUR ADMINISTRATOR FOR SOMETHING LIKE THIS???????”………..when a “deletion” is needed the MOST?????

P

Yeah I was wondering the same thing Perry, sure got rid of my helpful link awful quick yet this is still here.

jer are you alittle upset that the admin didn’t like your site, yet allow this crap to stay on here? where is lee when ya need him?! yo leeeee…. here boy, got a boner for ya!!!!:) 😉

I was diagnosed with CIDP in Nov and am receiving immunoglobin infusions every 3 weeks. I suffer from extreme pain(hot swords running in and out of my hands, arms, legs and feet) in my legs, arms and sometimes the left side of my face. I have lost all sensitivity in hands and feet…but the pain continues relentlessly. My doctor gave me cymbalta and it does help some. I’ve tried lyrica, neurontin, etc. and also had some very bad side affects. I am not diabetic. This illness is progressive and debilitating! I hope you find something to take the pain away. When my pain becomes overwhelming I take 1mg of dilaudid. It knocks me out for a few hours, but keeps the pain subdued for about 6 hours. Ginnylee8:)