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Old 01-16-2010, 08:57 PM #21
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Hmmmmmmmm... Yes, no kidding, female Viagra?!!. I think I may bring this up with him in February, my next appointment. Maybe, a small dose would be okay. Perhaps the dosage was much too high initially. I will talk to him about it, and I will let you know how it works in lower dosages.

Okay! More learned. Thank you, Cyclelops.
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Old 01-16-2010, 09:11 PM #22
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Pramipexole and several of the similar drugs, can cause compulsive behavior, so people have to be careful with it. It can cause gambling, hypersexuality, compulsive spending etc. For me, my libido got a charge. Literature suggests it can have that effect. It is for either gender....not just females. Viagra really does nothing for drive, only men's performance. If they have low drive, well then who cares about performance, right? Pramipexole can cause drive....but, it can get out of hand with the drug as well. Pramipexole effects drive, not performance.

You were probably on the 1.5 3x per day which is the parkinsonian dose. That is a common mistake that docs make with Mirapex. .5 nightly is plenty, in general, and most people get by on 0.125 or 0.25. I take 0.25mg. That is plenty! More and I might get myself in trouble.
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Old 01-16-2010, 09:18 PM #23
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... I am in a substantial amount of pain. I don't have a choice. My system won't function anymore...
Cyclelops, and others, how do you manage your pain without pain medications?
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Old 01-16-2010, 09:21 PM #24
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I don't want to sound flippant about this drug. It is a serious drug. Too much of it could conceivably shut down systems, such as digestion. Nausea is a real issue with this drug, as is hypotension, both symptoms of autonomic neuropathy.

If I did not need it for RLS, I would not take it. I just happen to absolutely need it for RLS, and I have a bad case. I wish the RLS would go away.

If you have gastroparesis, I would stay away from dopamine agonists unless you have to use it for RLS. It could gum up your GI system. That is the reason they give dopamine ANTagonists to block the effect of dopamine to get your stomach moving again.
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Old 01-17-2010, 01:57 AM #25
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How does Requip work? Or does it not? Mere.

Hi Mere, Tried Requip I think, hard to recall all the drugs over the years, only able to tolerate rozerem and mirapex. Have been taking .5mg mirapex twice day. and 8Mg rzerem 2 hours before bedtime. And ambien just before really wanting to sleep. Found that inflamation is tied to the nerves refusing to calm down,, RLS can be torture on top of feeling someone turned up the wattage on my nervous system..

Had serious insomnia and sleep resistance ever since had the vasculits began [naturally]. Tried every kind of med, none worked or were tolerated or both. Been six months- plus of sinus issues. Gut not great either. Had no idea mirapex affected gut.

Have no partner since '90 and certainly no hint of mirapex as womens viagra. Maybe blocked by Lexapro. Just went off last month. Hmmmm... hope exists for a young 54 yr woman to have a life again!??
Thanks to both for the sharing.. Best Wishes TT
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Old 01-17-2010, 03:45 AM #26
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Default Gastroparesis!

Hi Mere,

Just letting you know that there is another one here on the the PN board with this horrible condition of Gastroparesis. I was diagnosed on 22nd January last year - almost exactly one year ago.

I have no real idea of why I have this except I started to get neuropathic symptoms - 24/7 burning, buzzing in my legs and a myriad of other symptoms like fasciculations (muscle twitching) starting in mid 2007. Near the end of 2008 terrible stomach symptoms started which led to my GP diagnosis after a Gastric Emptying study (<7% emptying in 90 minutes) and oesophageal manometry. The manometry showed I also have oesophageal motor disturbance.

The last few months seem to be indicating that my bowel motility has slowed also. I know the bowel function can be a bit of a catch 22 situation when unable to eat solid food, however I have built in strategies to try and help this, but with limited success.

I was also diagnosed with Fibromyalgia in January last year and there is some evidence suggesting that Fibromyalgia and GI dysmotilities go hand in hand. This is a link for an interesting brochure discussing this topic: http://www.digestivedistress.com/mai...php?page_id=24 then go to 'Information' then to 'Booklets' and the brochure is entitled "Your Upper Digestive Distress is NOT IBS". Unfortunately the brochure layout is all turned around however the content is good.

Drug wise I am currently on Cisapride (Propulsid) and sometimes alternating with Domperidone (Motilium). Cisapride is meant to be the drug of choice targeting GP but it was withdrawn from world wide markets in 2000 when it was shown to cause long QT syndrome - a heart anomaly. In Australia where I am, it can be prescribed with special permission from our TGA (Therapeutic Goods Administration). I am also on Lyrica which has been approved for use in Fibromyalgia and Tramadol as needed along with three times daily Panadol (Tylenol).

GP wise I am on a liquid/pureed food diet only. It's tough but the consequences are horrible if one tries to eat, as you would know. I am currently sitting at 55kgs (120 pounds) so have not reached a critical point where I am being considered for a jejeunostomy feeding tube. Have been offered the gastric pacemaker but will wait on that option as it is very expensive.

What sort of diet are you on?
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Old 01-17-2010, 08:27 AM #27
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Requip is in the same family as Mirapex. It is dopamine agonism that can cause an uptick in the libido. There is a compound called apomorphine (not the pain morphine) and they are looking at it for libido, however, there are DOWNSIDES to these drugs. Mirapex carries a warning for SLEEP ATTACKS. It also can cause severe compulsive behavior. I don't want people to think it makes one a nymphomaniac. Other drugs will interfere with the libido effect.

Viagra is a performance enhancer and does not cause libido to increase. Dopamine agonists can, in some people, cause and increase in drive, not necessarily performance, so, I guess it is not the viagra effect, but, more the effect of being more open to the encounter to begin with.

On how to manage without pain or sleep meds.

I have a LOT of pain. Interestingly, I had it ON pain meds.

I have a lot of sleep issues, but, now I sleep normally. I never thought I could ever, ever sleep normally again....it has taken 3 months, and some nights are not so good, but, half the time, I do sleep normally. I would have told others that there was NO way I would ever sleep normally again. I would have labelled myself an intractable insomniac. Weird, but, when I got thru with the weaning off drugs, and got thru the readjustment to not having them, I did OK. I think as a society, we are just programmed to feel that medicine is needed to deal with all chronic disease or conditions.

When you go off Z drugs or benzo's, your GABA system has to reset. It can take up to 2 years. Mine reset fairly rapidly, and I was surprised. I still have a lot of issues with GABA reset, but it is getting better. Coming off these drugs needs to be medically supervised, and the misery of the withdrawal is fairly long.

I have to curtail most of my activities. I am basically retired. I don't work outside the home, and I don't have to, but it would be nice. We could use my salary. If I had to get my sorry rear end out of bed at the crack of dawn daily, drive to work, and be on my feet for 8 to 16 hours of forced overtime, I would croak. Even the drugs would not help me. I can't be on my feet for that long or blood pools and I lose my breath and then keel over. I get hypotensive if I stand for a long time. My docs have told me to file for disability, but I have not. I am not filing with PN and Sjogrens. I won't get it. In 5 years I get social security and I hope I last that long.

If I overstimulate myself, I can cause some nasty vaso-reactive issues, and end up on the floor....like a fainting goat. I have lost all capacity to deal with profound stress. I can't deal with cold either, and I don't sweat in heat.

What I failed to realize is how profoundly my body reacts to ANY substance I put into it. Now I know. I can feel Tylenol. I can feel Aleve. I can feel coffee. I can feel my blood sugar get low. Instead of getting hungry, I get sick. It is utterly weird.

I do have more than PN going on, so not every one can expect these kinds of effects. My ANA has been sky high for 2 years. I think it likely there is some vasculitis going on. My platelet count is high too. My C4 is low. I have a lot of funky autoimmune stuff going on. Plus I have substantial injuries from a car accident many years ago.

When I went off ambien, my heavy legs went away. When I went off clonazepam, wow, what a siege, but, after it, my skin changed colors for the better. My personality came back, for what that is worth. In general, I felt better. Benzo's and Z drugs have profound systemic effects. Going off pain meds was OK. My system started moving again. Now I do plug up....do get full fast, do get nauseated but nothing to the incapacitation I had on meds. Also, I could not take H2 blockers....no prilosec! I got horrible esophageal spasms from it, and also from NSAIDS. The GI told me that NSAIDS have a strong neurological effect and can cause esophageal spasm. I still get esophageal spasm off the NSAIDS, but it is not incapacitating, at least not yet.

I manage because I have a support system to care for me....as tough as that is for my self esteem. I can do what I feel I can do. In summer I work my garden until exhaustion and then come in and lay around and groan. I cook when I can, clean as much as I can. Others pick up my slack, which is substantial.

Working my arms causes severe headaches.....just scrubbing a countertop can cause a 2 day migraine. Washing ONE window can land me in the ER, puking with severe, severe headache.

I used to take meds to have a 'normal life' and then it became clear that it wasn't working. Now if I take a med, I get sick. My body seems to like au naturale right now, and I can't override that. It won't let me. If I put something in my mouth, I get sick, that simple.

It is scary because the docs may add a drug to my IVIg and I really worry how I will react.
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Old 01-17-2010, 11:30 AM #28
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There is something wrong with my dopamine receptors, always has been. I had RLS as a kid. Then there is the issue of what I consider fun, which has up til recently involved scaring the crap out of myself. No I have not jumped out of any planes, and now that I am older, I am confined to being very reasonable...like walking is a thrill.

Dopamine is interesting. Anyway, I have some physiological problem with not enough of it, and if I don't use Mirapex, I tic...hence the RLS. I only tic at nite. People with Tourette's tic during the day, not at night.

When I took zofran, I ticked for 8 hours straight and nothing relieved it, not even a boat load of dopamine....I ended up walking the country roads until it wore off.....hideous.

I have learned to be very careful what I put in my body.
I dare say Cyclelops! When I have what I refer to as rls, it is only in the evening. Now twitching, that is different. I get that anytime on my face, eye and legs. Drives me crazy!
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Old 01-17-2010, 11:36 AM #29
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I don't want to sound flippant about this drug. It is a serious drug. Too much of it could conceivably shut down systems, such as digestion. Nausea is a real issue with this drug, as is hypotension, both symptoms of autonomic neuropathy.

If I did not need it for RLS, I would not take it. I just happen to absolutely need it for RLS, and I have a bad case. I wish the RLS would go away.

If you have gastroparesis, I would stay away from dopamine agonists unless you have to use it for RLS. It could gum up your GI system. That is the reason they give dopamine ANTagonists to block the effect of dopamine to get your stomach moving again.
Yes, my philosophy has been changing over the years in that "less is best". I don't have the rls often enough to treat it with Mirapex and it didn't seem to make a huge impact on the FMS.
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Old 01-17-2010, 11:38 AM #30
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RLS is circadian and occurs only at night. Mine occurs only in the evening and night. Has started as early as 3pm. Usually relents around 3am. RLS is characteristically a nocturnal event. It can occur in all limbs and upper back. Mine does that. It started with legs, and moved to include arms and upper back. It is the irresistable urge to move the affected part in some way, and looks a lot like a tic.

As a kid it used to come on in 3 day attacks. During perimenopause it went to all the time. Poo. One of the joys of aging.

Hideous condition. I can't think of any use for it, other than to be a night watchperson.
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