need "proof" before Doc give Neurontin

[blackwolf]

my doc has agreed that i have chronic pain , i'm so impressed . ok not nice.

anyway, he says if i can provide him with "proof" that it is used and may help, he might be willing to try it.

i have searched for 1 1/2 hours, and can't sit here any more. any one have that kind of info, or can point me in the right direction. i do have info regaurding treating pain assoc. with diabeties and cancer, but nothing for dysautos.

pease, any help or ideas.

thank you so much, i have to rest but will check in after my computer does it's virus check, about 1am. again thank you.

blackwolf

ps-i'm still hangin' in, but my fingers are tired.

[Miriam Poorman-Knox]

Yes,

The american academy of physicians that treat pain have issued a statement in the last 6 months, stating that pain is the most under treated disease. Their statement can be found on the internet under medical-- pain. There is a misconception that if docs treat pain that the patient will become "addicted" what dumbasses!!!!! If you truly are in pain you only use what you need---one does not become addicted by mere use. My husband is a doc. A well informed one who has always treated pain as well as other symptoms that patients have had. I would let your doctor know that neurontin is not a "street drug" and its use is varied and it will work on chronic pain only if you have it. There is no reason not to try it. Try and talk him into a 1 month trial. The drugs that we need for depression due to pain NOT being controlled can be more of a problem. I would suggest that you ask your doc to check some sites related to treatment of this, can e-mail me if needed, will send articles. Be firm,and take someone with you if you feel that you aren't able to get your point across clearly. Miriam

I re-read your post. Neurontin is used for chronic pain lots---call your pharmacist and ask them to send you in the right direstion, this is probably what he is looking for. Your pharmacist knows alot.....also check the PDR for neurontin uses.

[Laura]

Hi Blackwolf! I looked and looked and finally found this for you. Sure hope it helps. I will put the website and the write up as well. Laura!

http://www.dysautonomia-eduinfo.org/Medication.html

Medication

Medications Commonly Used to Treat Dysautonomia

Medications commonly used to treat Dysautonomia

This list contains some of the more common medications used to treat Dysautonomic conditions. This list is an overview and is not meant to be all-inclusive.

Florinef (Flucrocortisone): A mineralocorticoid and corticosteroid which increases sodium reabsorption in the renal distal tubules. It also increases potassium and hydrogen excretion, causing sodium and water retention. Used to treat hypotension in different forms of Dysautonomia.

Usual dosage: 0.1mg daily

Midodrine (ProAmatine, Amatine): An antihypotensive drug that forms a metabolite called desglymidodrine ( an alpha-1-agonist). Alpha-adrenergic receptors are activated in the arteriolar and venous vasculature causing an increase in vascular tone and an elevation of the blood pressure.

Usual dosage: Varies: May give up to 10mg three times a day during upright hours.

Beta-Blockers (Including but not limited to: Toprol XL, Tenormin, and Inderal) Block beta-adrenergic receptors in the heart, decreasing the influence of the sympathetic nervous system, decreasing cardiac output, and lowering BP. Affects the central nervous system by reducing sympathetic outflow and vasoconstrictor tone.

Most commonly used to treat Postural Orthostatic Tachycardia Syndrome.

Usual dosage: Varies. Starting dosages should be lowest available dose.

Selective Serotonin Reuptake Inhibitors (SSRIs) Including but not limited to: Celexa, Wellbutrin(see next page), Prozac, Paxil, and Zoloft. Potentiates serontonergic activity in the CNS by inhibiting neuronal uptake of serotonin. Thought to help with the confusion and difficulty concentrating experienced with different dysautonomic disorders; Commonly referred to as ?brain fog? it is brought on by decreased blood flow to the brain during periods of hypotension or severe tachycardic or bradycardic events. Also: Research indicates that Serotonin is one of the major neurochemicals that regulate the autonomic nervous system. SSRI?s play a major role in increasing the availability of serotonin to the damaged autonomic nervous system.

Clonidine (Catapress) Antihypertensive. Stimulates alpha2-adrenergic receptors that inhibit central vasomotor centers. This DECREASES sympathetic outflow to the heart and the peripheral vasculature. Most commonly used in treating Postural Orthostatic Tachycardia Syndrome to help control wide fluctuations in heart rate and blood pressure. Damage to the autonomic nervous system can cause hypotension and bradycardia in supine position and hypertension and tachycardia in upright position. Not as helpful in those patients that suffer from supine hypertension.

Begin with smallest dose possible to avoid sudden severe hypotension. Increase as tolerated until maximum blood pressure control is achieved. If patient is on a beta-blocker, the beta-blocker dose may need to be decreased gradually to avoid severe bradycardia/hypotension.

Neurontin (Gabapentin) Antiepileptic drug. Mechanism of action remains unknown. Used in Dysautonomia to inhibit CNS responses.

When damaged autonomic pathways partially heal into other damaged autonomic pathways, ?crosstalk? occurs. This causes one stimulated autonomic pathway to inadvertently stimulate another, causing an involuntarily and often undesirable affect.

Neurontin appears to greatly reduce crosstalk between damaged autonomic nerve pathways.

Other antiepileptic medications may also be used to control tremors found in some forms of dysautonomia.

Usual dosage: Varies with individual tolerance

Wellbutrin (Bupropion) Antidepressant Drug/CNS Drug. Weak blocking agent of reuptake of serotonin and norepinephrine. Slight inhibitory effect of reuptake of dopamine.

Usual dosage: Varies. Initially 100mg BID. May give up to 150mg PO TID.

Amantadine Hydrochloride (Symmetrel) Anti-Viral. Weak dopamine reuptake inhibitor, may inhibit reuptake of other neurochemicals in the brain. Often used in conjunction with a SSRI.

Dysautonomic conditions can cause a severe decrease or increase in gastric motility. Medications for GERD are commonly used. Other medications that help increase GI motility and may be prescribed for individuals with Dysautonomia include:

Levsin (Hyoscyamine, Cystospaz) Anticholinergic Drug. Completely blocks acetycholine. Decreases GI motility and inhibits secretion of gastric acid. Can be used to block cardiac vagal reflexes.

Usual dosage: 0.125mg-0.25mg PO TID or QID

Domperidone Maleate (Motilium) Peripheral dopamine antagonist. Has antiemetic and gastroprokinetic properties. Increases esophageal peristalsis and lowers esophageal sphincter pressure. Increases gastric motility and peristalsis. Facilitates gastric emptying.

Usual dosage: 10mg PO TID or QID. Maximum dosage is 20mg QID

[purplefocus]

That is wonderful advice you recieved. I am not coming from a knowledge of medical experience but my personal experience. I was having chronic pain in my legs, from my knees down. My legs were very restless and the pain I had I could feel deep inside but of course there was no obvious reasons. My doctor sent me to have a test done on my legs for nerve damage. They inserted very tiny needles into my legs and adjusted a machine to give me jolts. I could not tolerate the test so it was not finished. My doctor apparently having no written reasons to give me neurotin talked with me and we both agreed that this would be the best thing to try. I did not want Lortab or anything like that. I don't remember exactly how long it took, but I got where I was down to only having a very small ache. It was wonderful. A few months ago some of the harder pain was coming back and we increased my dose just a little and it has made a complete difference. If this is the type of pain you have I really hope your doctor will give you this drug. I have suffered no type of side effects from it. Best wishes.

Paige

[Jersey Girl]

I have just recently had to increase the amount of Neurontin I have been taking. I have the 100mg capsules so it is easy to do. I don't know if my increased need is due to weather or hormones or what, but I can't get out of bed without it because I feel so miserable. I need it every 4-5 hours. P.S. You're not the only one who couldn't tolerate the EMG test for nerve damage. I was crying after the first jolt--it made me think that this is what an electric chair must feel like--not a pleasant thought. The test had to be cancelled. There is a generic Neurontin and it isn't real expensive. I hope this doc will at least let you try it. Martha

[blackwolf]

thank you Miriam- i must admit that i like lliving here in South Dakota, but sometimes the docs are so backwards and tough to work with. i'm happy that you wrote back and i really apriciate it. my biggest trouble is finding something that works and doesn't back me sick, tough job lately. again thank you.

Laura- bless you- it is exactly what i need, i have also put the address in my favs file. ok, i admitt,it i'm crying now, thank you so much for the help.

Paige-my pain is mostly in my neck, shoulders, back, chest wall(left side mostly) and legs, though i have had trouble with my arms before too. i'm just kind of hangin' now, but a trip to the er is starting to become a possibility if it can't be controlled soon.

Martha-i had an emg done on my left arm, by time it was done, i was in tears, they never stopped the test.

again, thank you all, i'm done crying for now, i try to remind myself that all i get out of it is a headache.

i have to get off, i'm not even going to run my virus test tonite. too nasty now.

blackwolf

[Laura]

Hi Blackwolf! When can you see your doctor with this info? I hope you can get in quickly. It would have been nice if he could have used his resources as a doctor to research neurontin use with dysautonomia, instead of having an unwell patient look it up. I guess that's the way it goes these days! I'm so sorry things have been so tough for you. Hang in there! Laura!

[Merrill]

Blackwolf, It would be great if you could figure out the source of your pain ... there may be a cause (other than dysautonomia) that could be treated at the same time you're getting relief with a med like neurontin ... If your pain is centered in your neck, shoulders, back, even legs, for example, you may be dealing with bulging disks, arthritis, etc in your cervical spine that Nina and I and others suffer from ... and physical therapy can help with that. (Leg pain/sciatica could be related to disk problems in your lumbar spine--or it could have a muscular source.) Have you had an Xray and/or MRI? Forgive me if I'm forgetting some stuff you've written in earlier posts ...

And I do hope your doc gives you the darn meds--what's the harm in trying for a month!? I've never heard of anyone making the patient find the research ... grrrrr...

Best,

merrill

[blackwolf]

thanks all of you. i'm now almost to sick to make it back to the clinic now, so i'll see how it goes tomarrow. my daughter broke her glasses and i have to get her taken care of first.

per the pain-i have been told i have cfs/fibro, i was never told if i have both or one or the other, i know that i have some arthritis in my upper back, but that is my own fault, i used to train horses. i also have been told that my neck is "unstable", whatever they mean by that. i would love to have a new mri, but my doc said not yet.

ihave been thru the pt world on several occasions, right now i do light wieghts, streching and some walking around the house for a certain amount of time. as for any major excersing, i have been advised by my cardio doc not to do anything really hard except in the pool, to help with my blood pressure. my proamatine is giving me fits right now and i need to go in and get on the mestinon as soon as i can.

thank you all, i'm off to the bed, i can hardly sit up anymore. nite all.

blackwolf

[briarrose]

Blackwolf

I was told before that I have Fibro & CFS before, I told my doc not to write it on my record. I have had chronic pain for over 10 years now. Neurontin is the first thing that has helped, it works better than pain killers like Vicodin or Percocet. I can't bare to be without my Neurontin as it is a wonder drug. I haven't had any side effect from it. My mom tried it last month and she didn't like it because it made her drowsy so she only takes it at night now.

[MightyMouse]

Here are some related articles and sites

interview w/ a medical professional--neurontin is suggested about halfway through in relation to addressing sleep problems and pain

http://my.webmd.com/content/article/71/81193.htm

a discussion w/ Paul Cheney, as CFS researcher--

http://www.cfsresearch.org/cfs/cheney/18nf.htm

report of Neurotin and CFS clinical trial

http://chronicfatigue.about.com/b/a/2004_10_29.htm

patient ratings of neurotin for CFS

http://remedyfind.com/rm-2036-Neurontin.asp

Also, a former doctor of mine, Dr. Podell, lists neurontin among the standard treatments for Fibro

http://www.drpodell.org/fibromyalgia_treatments.shtml

[blackwolf]

dear briarrose-i am making my lst stabe at this doc tomarrow(today) and am hoping his ego won't get in the way again. if so, i'm sure i'll be on my own, again. should i be happy or sad?

mightymouse-thank you, i'm still printing off anything that might help, if nothing else, mabey i'll just overwhelm him and he'll give in?

today i made the mistake of going out to do some shopping, my mom gave me my bday money and so i spent it on some beading stuff(old hobby, new ideas). by time we drove to the bank, hit my beading supply store, got a few groceries and picked my hubbies meds, i was so bad as i could hardly walk. my own fault. i'm pins and needles, ok nails and gravel, on maost of my back and walking is still hard and very painful. each step is like a nasty fall. ok, enough whining.

nite all, i do have something to help me sleep, and it sort of works, for a few hours at least.

thank you all, and i really do mean it!!!!

blackwolf

[MightyMouse]

Blackwolf, I make beaded jewelry--and I buy almost everything online--I use Fire Mountain Gems--their website is www.firemountaingems.com

Might save you a trip out for next time

[walstib9]

tried neuron. for a few yrs for sleep then it backfired big!!!! Postal almost! (:

I am about to see if I can copy/paste something imp in the REM and COG pages. Here goes.

Hi ((((BWolf))))

POTS bad bad right now.

[blackwolf]

nina-i do use them actually, fire mountian that is, but my mom thought i might like this new store in town, it was a gift certificate, so i had to use it. it was ok and i did get some more wire and some nice stones as they was in sale. they also have "free" classes, as in you buy or bring your own beads.

walstib9-still thinking of you and i hope you feel better soon. i am on the lookout for any major or minor things that i don't like.

anyway, the reason i was writing was to so that the doc gods were smiling on me friday. i went to the urgant care clinic to see if i could get something to help me till monday and that was when things fell into place. the doc was from north dakota and was here just for the weekend. it turns out her brother has pots to and she was very suprised to find out that i wasn't on neurontin. she put me on it right away. 300mgs, three times a say. i feel lots better, but she did reconmend pushing for an mri from the base of my skull to the end of the thorasic(sp?) and get as much work up done as possibel. she said she would be seeing my doc on saturday morning and would write out her recomendations for both the pots stuff and the neuro. work up. i still have some pain but nothing like it was. i am worried that both my arms have no feeling sometimes and i have had to stop most of my daily activities, (crochet, helping with house work and wrestling with the kids is just to much). i also have large areas that are "dead to touch" on my neck, back and shoulders.

best to all of you and thank you for helping me stay together as it were, through all of this nasty business.

feeling somewhat human again. thank you all!!!!!!!!

blackwolf

[Laura]

Yay! What luck! How great that you've finally recieved some help! Hope things continue to improve for you! Laura!

[blackwolf]

thank you laura, i'm feeling better and just need to sleep alot right now. i am hoping for more relief after i find out just what is up in my neck and back.

thank you, blackwolf