Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-06-2007, 12:26 PM #1
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Default I'm Blowing Up!!

Hello Everyone. I usually post on the Tos forum. I am hoping for some insight and information on the medication gabapentin. I have a severe burning issue and I guess I have no real or confirmed diagnosis as yet. I started taking gabapentin in June of this year. Upon starting with a low dose of 100 mg @ bedtime. Right away I got some relief of the burning in my neck, scapula area and my left arm and hand. My dose was then increased to 100mg @ breakfast. I am presently on a doseage of 400mg. I was suppose to increase to a mid day dose of 200mg, for a total doseage of 600mg's., which to my understanding is still a relatively small dose. I have not done so because I have a feeling i may be allergic to this medication. I have began to blow up!! My ankles are swelling with fluid and I have hives as well. I am so tired, I don't feel like doing anything. I am not as alert, I'm having difficulty remembering any thing, time, dates and sadly appointments!! Today I haven't taken my gabapentin yet, I will see the Doctor on Friday. Hives aren't as bad, still some swelling in my face, ankles etc.. But as today goes on the burning is getting bad, bad, I'm thinking I might have to take it. Honestly I feel like this day is just like I'm dreaming it. I don't feel right. Thanks in advance in response to this thread.
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Old 08-06-2007, 01:21 PM #2
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Hairdresser.
I'm sorry you are having problems with the meds. I am also on it. I take 300mg in the morning then 600 at nite. It has really helped my nerve pain. It does make me sleepy (in fact, I just woke up from the dose I took at noon.Yes I was late). I do tend to forget things,and my short term memory isn't the best. I don't recommend not taking the meds. It is an anticonvolusive med.(don't mind my spelling, it's another thing that isn't great anymore). I haven't had much swelling from the meds, but boy does it make you want to eat sometimes. I really have to watch it. Perhaps you should let your doc know about what is going on. Keep us posted on how you are doing.
Mary
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Old 08-06-2007, 01:31 PM #3
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You will probably have an even worse reaction just stopping. You have made it up to enough where you need to ween yourself off. Call your doc and state it is a reaction to the meds. They should either help you right away or have you go into the ER. They might have something to help with the allergic reaction of it, just until you can get weened off of it.

Hugs. Let us know what happens.
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Old 08-06-2007, 02:09 PM #4
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Default Don't just stop the Neurontin!

Hi.

I was also on this medication - for like 2 years. I was taking 600mg x3 day. I didn't have the swelling/hives issues. But, I haveto say, don't just stop taking this medication. That's the worst thing you could do. If you see that the side effects are getting better, stay with it. Sometimes it takes a good few months for your issues to stabilize. If not, ween off the same as you went on it - your doctor can guide you.

I just weened off the Neurontin and starting taking Lyrica. Have you guys had good results from it? Boy, I'm in pain. I'm taking 100mg x 3 day. I was told that people have better luck with pain when taking Lyrica.

Boy, I don't know. I'm just barely hanging in there...

Hairdresser, please let us know how you are doing.

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Old 08-06-2007, 04:12 PM #5
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Hi haurdresser,

Gabapentin is one of the first GABA drugs on the market; they were designed to limit or prevent seizures (like epilepsy), and they do this by filling "parking spaces" on nerve receptors at synapses.

At the synapse, the sending nerve translates its electrical signal into a chemical neurotransmitter (NT) that crosses a gap before landing on the next nerve's receptor. The receiving nerve translates the chemical message back into an electrical signal that it sends to the brain.

It was thought that epilepsy was caused by electrical storms in the brain and that one way to interrupt the storms by blocking the NT from reaching a receptor on its target nerve cell; and that is exactly what GABA does. It doesn't carry any message, but it takes up a receptor that would be used by that NT. Gabitril worked pretty well.

It also works well at blocking receptors in the synapses of sensory nerve fibers. (I'm working on editing a post that describes all of this and should finish soon, so for now you'll just have to trust me when I tell you that GABAs are very useful, but the later ones have greatly reduced the side effects from gabatril.

I began with gabatril and after titrating a little, had double-vision (scary when you're driving); dizziness and balance problems; and cognitive problems up the ***, and my doc switched me to Lamictal; which worked really well. (It has some scary side effects and you should read the FDA warning).

Don't give up on the idea simply because the side effects of one drug are too severe. You could tolerate some of the others (Lamictal and Lyrica come to mind). Insurance companies want to pay for gabatril because it's the only GABA in a generic, but an explanation of it's side effects on the patient can usually persuade them to pay for the more expensive ones).

Don't just stop taking gabatril. Call your doc and let him/her schedule the rate at which you can lower dosages, and if this is medical advice, so be it: If you can't reach your doc, lower your dose by about 15% (if you have 100mg caps I would go down to 300mg), and continue at that dosage until you can talk with the doc.

There is some risk of seizures after abruptly stopping GABAs, but some of the side effects you're having pose a much greater risk for you.

Finally: I'm reading this almost four hours since you posted it, so if your hives have worsened; if you're having any mouth swelling or breathing problems, and you haven't already done it, CALL 911 NOW, and never take gabatril again. Those reactions can kill people...Vic
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Last edited by Vicc; 08-06-2007 at 04:21 PM. Reason: add stuff
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Old 08-06-2007, 04:15 PM #6
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hon...you need to call your dr. this could be edema.

i just saw vicc''s post as i was typing this. i agree. call 911 or your dr asap.

i didn't see anything in your post about how much urine you are passing? is it clear?
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Old 08-06-2007, 07:45 PM #7
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Hello everyone I appreciate your opinions. I am to see my Doctor on Friday. I still feel swollen in my face, and ankles. The hives are not any worse. I did take my dose as usual, and unless my symptoms get worse I'll continue until I consult with my Doctor. I delayed taking it this am, but as the burning and pain got worse I took my regular doseage. Vicc your post was amazing , so very informative, Thankyou. Hi Dealingwithtos I tried Lyrica and in my experience only, I didn't like it. I find gabapentin works better for the burning and stabbing pain. I hope you get some relief with it. Thankyou all for posting, I'll be fine but I will talk to my Doctor about it this week.
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Old 08-06-2007, 07:48 PM #8
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fluid build up can cause heart attack. do not wait until Friday!!!!! joan
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Old 08-07-2007, 08:43 AM #9
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Hairdresser,

How are you doing today?

Hoping that your hives/swelling are not worse and you're hanging in there.

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Old 08-07-2007, 07:53 PM #10
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Hello Everyone and thankyou to all for your imput. I wasn't to good this morning. I was afraid to leave the bathroom and the swelling in my ankles and face are about the same. I called my Doctor and I will see her tomorrow. I've decided this medication is not for me. I am also going to ask about being referred to a specialist about 4 hours from home. I am so tired of the run around from doctor to doctor and no two diagnosis are the same. I know the specialist prescribed gabapentin for misfirering of nerves but my question is why are the nerves misfirering? TOS, Cervical radicular pain?? Forgive me three years is just too long to go in limbo. Sorry I guess I just needed to vent. Thankyou again for posting.
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