RLS LIFE: Drugs, Side Effects & Everything Else

For everything and anything else not covered in the other RLS/WED sections.
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sardsy75
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RLS LIFE: Drugs, Side Effects & Everything Else

Postby sardsy75 » Fri Apr 23, 2004 2:02 pm

denisefs wrote:Well ok, tried Neurontin for the first time last night. Doc started me with 100 mgs for 5 days, then 200 for 5 days and finally 300 for 5, after that I see her again in a month. The good part was my legs seemed to be a bit better :) The bad news is that I had severe stomach cramping, combined with constipation and a constant urge to go. It then changed over to very loose bowel movements, but still bad cramping :cry: .So again I was up till 4am. I'm even a bit crampy this morning. No nausea though. I'm not sure if this is coincidental or not :?: . Has anyone else experienced what I described? I'm a bit leery about taking it again tonite, but a true diehard. If it happens again, I suppose I will have a 3month supply of Neurontin up for bid :wink:.

Question: What site do I check to read side effects of prescription drugs? Someone posted about a weight loss with cabergoline, but also said there are a lot of side effects.

Thanks everyone for your very informative replys. Jumpy, I must say "you really do your homework"!


Hi Denise

I highly recommend the following two links:

1. http://www.jmjudson.com/Medications.html
If you click on each link it will take you to another site which gives consumer information about that particular drug, including side effects.
2 http://www.rlshelp.org/rlsrx.htm
This site gives a more general overview of each drug, and does list some of the more common side effects.

Cabergoline (Dostinex/Cabaser)
The only link I have is to an Australian medical site, but it should give you an idea: http://www.mydr.com.au/drugs/cmi.asp?prodcode=5171

I was prescribed this drug in July last year. My inital dose was 1mg per day, progressing up to 5mg per day within 6 weeks.

The worst "common" side-effect i've had is a complete loss of apetite. So much so that I can go a whole day without eating, but not feel the slightest bit hungry. I literally have to make myself eat each day and have found that constant "grazing" is better than trying to force an entire meal down in one sitting.

I weighed roughly 212lbs (approx 96kgs) when my RLS hit out of the blue in late June last year. Right now, I weigh 144lbs (approx 65.5kgs). It wasn't just the loss of apetite though, it's also the almost constant involuntary exercise due to pretty much constant 24/7 RLS.

I've also copped a few of the other side effects, like nausea, blood pressure going crazy (even more so now that i'm on levodopa/benserazide as well), and the dry mouth starts to get annoying when you're gossiping to someone for more than 5mins!!

I've also had a persistant dry cough since around September last year. Cabergoline has a history of causing lung problems if used for long periods. I had chest x-rays done in January, followed by full lung function tests, but they all turned up clear. I've been using a steroid-based puffer to keep it at bay, but it has returned (for a third time) in the past week or so....which is not a good thing! We suspect it is the Cabaser, but will have to keep you posted.

I'm off to see my Neuro tomorrow and will be armed with a list of questions, possible tests to be done (including another full blood workup, it's been a while), and a "diary" of my RLS including symptons & drug treatments from July 03 to now. I desperately need a change in drugs or else I really will find the nearest chainsaw!!

I hope this has been helpful!

Take care
Nadia

P.S. My current drug cocktail is (which I hope will change tomorrow):
4mg Cabaser (taken at dinnertime)
125mg MadoparRapid125 (taken Three times a day)
5mg Stilnox (sedative) (half an hour before bed)
25mg Sinequan (half an hour before bed)
2000mg Valerian (one hour before bed)
1 x BioMagnesium
1 x Womens Multi-Vitamin & Mineral
I also use over the counter codiene-based painkillers for any pain only when necessary.
Last edited by sardsy75 on Thu Nov 30, 2006 2:49 am, edited 8 times in total.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Forgot to mention...

Postby sardsy75 » Fri Apr 23, 2004 2:08 pm

Hi again

I forgot to mention this. If you are worried about any side effects you might be experiencing, tell your doctor! Some you will be able to put up with, but others, like my cough, can lead to further complications down the track.

Please heed the advice on each of the sites that i've linked to.

Niters
Nadia
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Good post Nadia!

Postby jumpyowl » Fri Apr 23, 2004 5:17 pm

as usual!

And I almost missed it as I was involved with the dialogue at the end of the thread entitled Neurontin. There are other valuable contributions scattered among various threads on hydrocodone, neurontin, and other interesting topics. I wonder if there is an easy way to cross-reference them. :?:

This discussion boad is really livening up. Thanks to you all! :D
Jumpy Owl

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Re: Prescription Drug Side Effects

Postby denisefs » Fri Apr 23, 2004 5:50 pm

Geez Nadia,


No wonder you're never hungry. You're always putting one pill or another down your throat. (Don't mind me, I'm just trying to bring a little humor to a very serious problem).

I hate to think that my RLS can get soooo bad, that I am taking all those pills. I hope your neuro comes up with something better for you tomorrow. I am very interested to know. I think we all are!

Sleep well and keep us posted!
Denise

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Re: Prescription Drug Side Effects

Postby sardsy75 » Wed Apr 28, 2004 10:40 am

Humour is more than welcome Denise! If you don't laugh you cry, and crying expends more energy than laughing!!

sardsy75 wrote: I'm off to see my Neuro tomorrow and will be armed with a list of questions, possible tests to be done (including another full blood workup, it's been a while), and a "diary" of my RLS including symptons & drug treatments from July 03 to now. I desperately need a change in drugs or else I really will find the nearest chainsaw!!


My Neurologist can come across as being quite aloof; and this can be quite off-putting when one is seeking help with relief for such an excruitiatingly (spelling?) frustrating problem!

I realized that I had let his aloofness get the better of me and took along with me everything listed in my quote above, along wih my ever-patient husband who comes in handy for filling in the "blanks". In the end, although I’m still unsure of my next drug experiment, it was quite a productive visit! There was One comment he made that will be embedded in my brain for a while yet (and I quote) “you are still the most severe case of Type A Restless Legs we have ever come across; it running in your family doesn’t help; and it could take a while to find some decent relief” . I almost said “tell me something I don’t know, now what do we do about finding that relief” but decided it wouldn’t get me very far.

He was very interested in my "diary" (and has kept a copy of it for his files) and it was a handy reference when it came time to discuss the next plan of attack. As much as he wanted me to stay on it, we agreed that my system had become too used to the Cabaser (cabergoline – dopamine agent ), and it was also the most likely culprit for my ever so persistent cough. We also agreed that it was probably the most likely culprit for the exacerbation of my Raynaud’s (i.e. when my fingers, toes, nose and/or ears are exposed to cold or emotional stress, a spasm occurs in the blood vessels in these areas causing a major interruption of the blood flow to those areas) which was not a good thing. As for the Madopar (levodopa/benserazide – dopamine agent), it’s been wreaking havoc with my blood pressure since day one and had conveniently “dropped” just before my appointment to 100/70.

So, I’ve been taken off the Cabaser & Madopar completely and am now on 250/25mg of Sinemet (levodopa/carbidopa – dopamine agent) each night. I’m still taking 25mg Sinequan (tricyclic anti-d), 5mg Stilnox (sedative), valerian, bio-magnesium & a multi-vitamin/mineral tablet. I also received a script for Neurontin. HOWEVER, I have to wait until the Cabaser & Madopar are completely out of my system (around 6-9 days) before we can see what the Sinemet does by itself before we decide if Neurontin is to be added. If it does get added, I start at 300mg at night with the option to double and/or triple that if need be. But that scenario is quite a few days away yet. I am a bit concerned about the Sinemet as I have read more negative than positive things about it; but we’ll see how I go. He also wrote me up for a blood test. I will have to find out from my GP exactly what he was testing for; iron & B12 levels were in there, along with a list of other things he didn’t explain.

It’s been an interesting few days so far. The mornings have been relatively symptom free, but then “kick-in” around lunchtime and get progressively worse as the day/evening goes on. Yesterday (Tuesday) I copped a very extreme “get me a chainsaw now!” case at about 4.30pm and spent the rest of the night going through hell. I put that episode down to a culmination of the emotional stress of my mom’s best friend passing away on Monday night, spending most of yesterday with the family (our families are like second families for each other) helping out, and going through withdrawal from my drugs. I have booked myself in for a massage & craniosacral session for Friday morning.

I managed to snaffle an appointment with a younger Neurologist on the 21st May. I have to travel to Brisbane (over 600kms away) for it but I am curious to hear someone else’s point of view. When trying to make the appointment I was actually put through to his cell-phone & suddenly found myself talking to him. So I bit the bullet and asked straight out “do you do consults on Restless Leg Syndrome”. He said “yes!” So, the first hurdle had been overcome.

I have also snaffled an appointment with one of the top Neuro’s in the State, but that’s not until September 20th. I will wait until the day draws closer to decide if I keep it or not.

So much for keeping it short, but that’s as nutshellish as I can get it.

Will keep you posted on my current drug experiment progress!
Last edited by sardsy75 on Tue Sep 07, 2004 10:25 pm, edited 1 time in total.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

denisefs
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Re: Prescription Drug Side Effects

Postby denisefs » Wed Apr 28, 2004 12:14 pm

Nadine,
Thanks for keeping us updated. I hope you finally get some relief from this latest visit. Your neuro sounds like he knows his drugs though. He took you off the ones that were causing you the most problems. It's a good thing there are so many to try. Hopefully the Sinemet will work for you. It at least cuts some of the pill popping.
I have not had the time(or the courage)to give Neurontin a second try yet. After the cramping that lasted for 24 hours, I knew that I had too much scheduled this week, than to be laying on the couch all day, holding my stomach. I still have the hope that the symptoms I spoke of were due to possibly a virus going around. Since my tummy still is not quite right!
I've been watching my RLS more closely since finding this site. I am now noticing that there is a direct relation to stress. In fact, I had a stressful day yesterday, from the minute I got up. I found that my legs were worse last night than they've been in a long time. Most nights I keep my mind busy playing on the computer when I can't sleep. But, last night I couldn't sit long enough to even play.
:idea: Wouldn't it be great if they found a universal med. that would work on everyone?
Am praying for your mom and her friends family. That they can get through this, and know that she is finally at rest.
Warmest Regards,
Denise

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Post era of neuro's visit

Postby jumpyowl » Wed Apr 28, 2004 1:30 pm

Hullo, Nadia! I read your report on your visit and I think you did extremely well. :) First, you went well prepared. Showing him the diary was a master ploy. Even noncaring doctors are impressed (scared?) of diaries as a "paper trail." As something that can be used to show that they were not diligent in your care.

“you are still the most severe case of Type A Restless Legs we have ever come across; it running in your family doesn’t help; and it could take a while to find some decent relief”


Yes, especially if you can only see him every six months or so! I even argued with my doctor after he grudginly prescribed neurontin, and said with a heartfelt relief: "Well, I shall see you in a month." Then I replied: "what if the drug does not work (what if it has terrible side effects - this I only thought). This disorder can take quite a toll, you know. Should I just suffer another months in silence? Can I call you?" Then he mumbled: "Well we have to give the drug a chance to work...!

Then being pushed a bit further he admitted that if neurontin does not work, he will wash his hands and passes me on to Dr. J, who is the head of the Sleep Center and a pulmonologist. "After all, he is the expert."

And this is where we left it. I will give neurontin a chance. I do not have any bad side effects yet, but I certainly feel it that I took an anticonvulsant (at only half the dose) . This I did not feel with Topamax which was at least as effective in getting rid of paresthesias. When you get your neurontin we can exchange personal experiences :wink:

I also believe that stress makes everything worse. In extreme cases it can be fatal. I am with you and your family in spirit in your grief and my prayers are with you. :cry: It is a very sorrowful time for you all who loved this special person, Robyn, but I hope you can find some peace in realizing the she no longer suffers and is in a better place.

Denise I am replying to you in the other thread subsequent your post to me.
Jumpy Owl

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Current Experiment Interim Results

Postby sardsy75 » Wed May 05, 2004 11:50 pm

Thought I'd post the interim results of the current drug experiment:

If you wish to know my drug schedule prior to April 24th, please refer to the first post in this thread.

Saturday April 24 - Monday May 03
1 x Sinemet 250/25mg (levodopa/carbidopa) at night
1 x Sinequan 25mg (anti-d) an hour before bed
1/2 x Stilnox 10mg (sedative) an hour before bed
Plus the usual Valerian, Bio-Magnesium, Multi-Vit&Min

Tuesday May 04 - Wednesday May 05
1 x Sinemet 250/25mg at night
1 x Neurontin 300mg (anti-convulsant) at night
1 x Sinequan 25mg an hour before bed
1/2 x Stilnox 10mg an hour before bed
Plus the usual Valerian, Bio-Magnesium, Multi-Vit&Min

Thursday May 06....
1 x Sinemet 250/25mg first thing in the morning
1 x Sinemet 250/25mg at night
1 x Neurontin 300mg at night
1 x Sinequan 25mg an hour before bed
Plus the usual Valerian, Bio-Magnesium, Multi-Vit&Min

Monday (03/05) & Tuesday (04/05) were on par with the absolute worst days/nights I had when I first started on Cabaser. Walking didn't work; stretching didn't work; hot showers; massage; waggling; nothing worked and I reached my lowest point when my legs simply would not hold me up and I collapsed on the floor on Tuesday afternoon simply unable to move. It was over an hour before I had enough strength to crawl to the nearest couch.

I figured then that the Cabaser & Madopar were well an truly out of my system and that the Sinemet alone was not going to help much. Time to break out the Neurontin and see what miraculous effect it might have!

I went to bed literally thrashing on Tuesday night. I FELT the Neurontin kick in about half an hour after I'd taken it; kinda like a "codeine hit" & a bit weird. It was after midnight when I finally fell asleep, but woke up numerous times during the night.

Wednesday (yesterday 05/05) my RLS was quite manageable during the day; only mild symptoms; I even managed to sit through a movie (although I must admit to eating the popcorn kernel by kernel in an effort not to let my legs ruin the show!). We were booked to go to a friends house to watch a major boxing match on pay-per-view at 7pm. Between 7.30pm & 9.45pm I had two major RLS "attacks" which found me pacing around their house & doing stretches in their kitchen.

I did not know what time the boxing would finish and so could not calculate accurately when I should take my meds. I eventually gave in to my legs at 9.45 and took the Sinemet and Neurontin.

Just after 10:15 the Neurontin hit with a BANG. A feeling of someone stripping me of my energy washed over me so suddenly I was dizzy. The only other way to describe it was as though I'd taken a whole box of Nurofen Plus (one NP has Ibuprofen 200mg & Codeine 12.8mg) and was on a Codeine "high". I spent the rest of the fight lying on our friends bed with the world spinning around me. My hubby made a lame joke about people paying top dollar for that feeling! We dragged me home at midnight and put me to bed with my Sinequan & Stilnox. I was not impressed when my arms suddenly decided that it was their turn. Aaargh!

This morning I feel completely washed out. Not much sleep at all last night.

My Neuro called at 8.30am and after filling him in on the past few days events, including the rather unpleasant Neurontin experiences I pleaded for some relief for the daytime symptoms. I was getting completely fed-up with having nothing to rely on when everything kicked in mid-mornings. Hence the Sinemet being added for the morning as well. Here goes nothing!

Yikes, i'm supposed to be at work at 10am (it's 9.45am)! Better pull myself together and put my happy face on!

Will update again in a few days.

Nadia
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Postby Rubyslipper » Thu May 06, 2004 12:34 am

Nadia, I am so sorry you are going through so much now. I know it doesn't help your symptoms, but at least you know there are friends who know what you are going through. I have been on 300 mg of Neurontin for about 3-4 months. I haven't had any bad experiences with it so far. I have weaned myself off Wellbutrin so am just on the Neurontin and Mirapex. But things aren't going too great. I see my doctor tomorrow so maybe I can get relief. Stress is definitely a major player in RLS. Stress is not always something we can get away from so we have to learn how to manage it. I'm learning very slowly. Unfortunately, I have a boss who is a jackass and causes lots of stress. I am also a person who likes to keep busy and help out. I need to learn to say "no" but there is so much I want to do. Please keep us posted on your journey, as we truly care about you. Take good care of yourself. And way to go on snagging the young nuero. :wink:

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Good & Bad Stress

Postby sardsy75 » Thu May 06, 2004 9:52 am

Dearest Ruby

Thankyou so much for your endless support even though you are going through an equally rough time..... you're an angel and a real trooper!!!

It's only early days with the Neurontin, so I'm not going to give up on it just yet.

Stress, or should I say "Bad" Stress is definitely a major player in pretty much all RLS cases. "Good" stress, when you can find it, can be an excellent assistant in managing an RLS attack.

Bad stress was what landed me in hospital back in February and culminated in me resigning from my job. My stress levels went from extreme to a much more managable level within a week, which was a good thing! Like you, I had a complete jerk for a boss but in the end, trying to manage the stress he was causing me was completely impossible.

Hang in there and keep working on ways to keep your stress levels under control ("selective hearing" always came in handy when my boss was being a right royal ****!!). You can always let off some steam in my direction!

The emotional stresses i've been through since mid-Feb have been a battle in themselves in that five people i've known (three were close family friends) have passed away. No, I am not joking; no it has not been easy; and yes it's added to my RLS woes in a big way. I have grieved for each of them, but have moved on knowing in my heart that they are no longer in pain and are safe.

On a positive note, I am back working again, doing bookkeeping. It's nice to get the ol' brain thinking about what it was trained to do.....number crunching! At the moment I'm doing one full day a week at one of the fencing businesses here in town and am really enjoying it! When I get myself more under control I'll be taking on other clients, and increasing my hours.

"Good" stress i've found can actually help stop an RLS attack in it's tracks. My hobby is scrapbooking and some of my page designs can become pretty intricate, particularly with beading.

A couple of months ago my hubby was writing an article for the website he writes for and asked me to type while he dictated (his brain was going to fast for his fingers!). After about an hour I could feel a nasty attack coming on. I though I'd be able to combat it by concentrating harder on what my hubby was dictating, but after about 5 mins of "wiggly" typing he was the one who told me to go and do some scrapping. At the time I was working on a baby page with beaded flowers. Within about 20mins of me settling in and concentrating on where each bead went, my legs had settled down. Unfortunately I haven't been able to sit still long enough for the past few weeks to complete a page....rather annoying!

Cooking something which requires particular attention to the recipe is also a good "good" stress example. 'Tis also something you don't have try to "sit still" to do; and the end result (if you get it right) should taste pretty good!

You said you like to keep busy helping other people out all the time. Is there anything that you like to do or would like to do/or learn for yourself and/or your husband that keeps you busy. Maybe a project around the house that needs doing? It doesn't have to be something wayout like a renovation! Setting it up and seeing it through step by step will provide you with some "good" stress and will also give you something to help counteract the "bad" stress your suffering at work.

Good luck with your doc appointment and let us know how you go.

Take care
Nadia
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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You two ladies are amazing!

Postby jumpyowl » Thu May 06, 2004 12:37 pm

Reading the last two posts made me feel quite humble. The "weaker" sex has again proved themself stronger than the other. :oops:

I think there should be a law against jackass bosses, especially when the "underlings" need support rather then being used as a scratching post. :x Perhaps there are some advantages of being retired. :wink:

All three of us are now on Neurontin! I am now taking two 300 mg capsules (total of 600 mg a day) in the evening and that seems to help more than the starting half dose. We shall see!

If anyone remembers, initially I was intermittently (experimentally) using another anticonvulsant, called Topamax (topamirez), at a low dose of 25 mg. It seemed to help with paresthesias! I even wrote the manufacturer (Ortho-McNeil) about my discovery. They promised to answer in two days. That was 5 days ago. -- Then I carefully read the official description of the drug. It is a sulfamate-substituted monosaccharide to be used as an antiepileptic drug. It comes in a wide range of pill sizes: ranging from 25 mg to 200 mg. Its efficacy was established in pediatric patients as young as 2 years old. The shock came on the middle of the second page under the subtitle PRECAUTIONS:

Paresthesia, an effect associated with the use of other carbonic anhydrase inhibitors appears to be a common effect of TOPAMAX.

No wonder the company has not replied. Here I was writing to them that Topamax was helping me diminishing paresthesias! This also explains why this medication has not been used before in treating RLS.

I am not abandoning this line of "research." And will report on any news I will have gathered.
Jumpy Owl

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AUGMENTATION!!!! Duh!!!!

Postby sardsy75 » Sun May 09, 2004 12:57 pm

Note (10.41 Aussie EST): In the time I have taken to labouriously type this message tonight standing here and then shuffling around the house for a while; I've gone through a number of stages: Duh! Doh! Doh! I'm such an idiot! Doh! Had a good cry! Been very angry! Calmed down! Duh! Doh! Where do I go now? Doh! Help!!! Doh!

I owe a fellow aussie RLS sufferer a drink....or six....the next time I'm in Sydney.

A great big THANKYOU to him!!!!

20/20 hindsight - gotta love it!!!

I should not have agreed to the Sinemet script on April 24. I should have come home and reread the stuff on Sinemet word by word that day.

I should have figured it out on Tuesday when I was lying on the loungeroom floor, unable to go anywhere but stay.

I should not have agreed to doubling a 250/25mg Sinemet dosage on Wednesday just past.

When I read a reply post to me on Friday from my fellow Aussie RLSer, the part he mentioned about 300mg being max of Levodopa per day pricked my ears big time, but I got sidetracked and didn't follow it up.

This morning, I was majorly annoyed when my legs started bugging me....after i'd had my morning dose of 250/25mg Sinemet....but at that stage put it down to tiredness and just got on with it. The penny dropped with an Almighty THUD at about 9.15pm tonight in the middle of an attack which is pretty much on par with Tuesdays (and is still going!!).

AUGMENTATION!!! DUH!!!!

I have scrambled through all my RLS papers to find the 2003 Medical Bulletin, and there it is, in black and white:

"The exact mechanisms contributing to augmentation are not know, but, empirically, DOSES OF LEVODOPA IN EXCESS OF 300mg PER DAY are frequently associated with this phenomenon. Moreover, it is MORE COMMON IN SEVERE FORMS OF RLS than mild cases. The tempatation to increase the dosage of leovdopa to overcome augmentation should be avoided beacuse increasing the drug further exacerbates the problem. Augmentation is the most serious and common complication associated with carbidopa/levodopa therapy. All RLS patients who take this medication should be carefully monitored for development of augmentation. The best treatment option is to change to dopamine agonist therapy."

I have just been back through my RLS diary and heres a summary of what i've been through this year in the way of Dopaminergic (only) drugs:

Up to Dec 31 2003
5 mg Cabergoline /day

Jan 1 04 - Feb 8 04
5mg Cabergoline/day
2 x 100/25mg levodopa/benseraside (normal one) /night

Feb 9 04 - Mar 10 04
4mg Cabergoline /day
3 x 100/25mg levodopa/benseraside (normal one) /night
(I figured out the Madopar augmentation on Mar 10 & my GP agreed)

Mar 11 04 - Mar 27 04
4mg Cabergoline /day

Mar 27 04 - Mar 30 04
4mg Cabergoline /day
2 x 100/25mg levodopa/benseraside (normal one) / night

Mar 31 04 - Apr 24 04
4mg Cabergoline /day
3 x 100/25mg levodopa/benseraside (1 every 4-6hours)

Apr 24 04 - May 04 04
1 x 250/25 levodopa/carbidopa /night
(Not happy about the switch between Madopar & Sinemet - but don't
follow it up - doh!)

May 04 04 - current
2 x 250/25 levodopa/carbidopa (1 morning & night)
(It JUST dawns on me today!!!!!!!!!!!)

I have also started on 300mg Neurontin on Tuesday night and have had pretty damn good hallucinations on it every night! Have taken 600mg tonight and hope that it doesn't affect me too much.....it's either one or the other.

As far as my Neuro is concerned.....he's fired.....and i'm looking forward to meeting the new one next week.....if I last that long and can still walk! I must remember to thank my hubby's Grandma for letting me have her old walking stick. At the rate i'm going tonight, I'm going to need it tomorrow.

Think I might ring my GP tomorrow morning. I'm sure he's gonna loooove to see me..... might see if I can snaffle a Permax script....or maybe a chainsaw.....

Well I'm off to enjoy(?) a most uncomfortable night......again.

Happy sleeping to everyone else.

Nadia
28/Qld/Aust
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Side effects

Postby jumpyowl » Sun May 09, 2004 1:57 pm

Nadia, I am not only sympathetic to your situation :cry: but I am also shocked and amazed (a weird combination) about your treatment. :roll: I had to go back and read your previous post to figure out what exactly is happening to you.

I have to leave soon :( but I will be back and spend some more time on figuring out what is going on with you. One thing I suspect is that your neuro #1 has not done his homework and he is shooting from the hip. Do not expect him to spend much time on your diary. He has not got the time and the right attitude to figure it out. I also suspect that he badly needs a head up on RLS, which he will not admit, and as a result will not acquire it.

So your decision to fire him is probably a good one (was there any explanation forthcoming about his disapparance from your life the past year? )

I need more time to figure your situation out but I (with you) suspect that you are on the wrong regimen and you should not continue with it. Try to tell the facts to your GP (make it concise, cut out the emotional stuff if you can). Trust your research more than the opinion and advice of your neuro #1!!!

I know this is not much but I will continue later on today. I have now got to run.

We may have to go private for some of this stuff.

My prayers are with you. You clearly need help the sooner the better.
Jumpy Owl

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WARNING - Mindless Ramblings!!!!

Postby sardsy75 » Tue May 11, 2004 4:17 am

WARNING!!!!!

Completely Mindless Ramblings Ahead.....read at your own peril....my mind is going a million miles an hour and the only way to make sense of it is to "write it down"....


Notes & observations for the past couple of days are as follows:

Sunday 09 May 04
Morning - 1 x 250/25mg levodopa/carbidopa
Evening - 1 x 300mg gabapentin
Night - 1 x 250/25mg levodopa/carbidopa; 1 x 300mg gabapentin; 1/2 x 10mg zolpidem; 1 x 25mg anti-d

I would rate Sunday as borderline severe/extreme on my RLS rating scale (none, very mild, mild, moderate, severe, extreme). I doubled my Neurontin dose to 600mg that night and for my RLS it did diddly squat. For the rest of my system it gave me a nice "high" feeling - Yuk.

Monday 10 May 04
Morning - 1 x 250/25mg levodopa/carbidopa
Afternoon - 1 x 300mg gabapentin
Night - 1 x 250/25mg levodopa/carbidopa; 1 x 300mg gabapentin; 1 x 10mg zolpidem; 1 x 25mg anti-d

Took my morning dose out of sheer habit yesterday morning...not that it did anything to improve things. My legs were at the moderate level before midday. I persevered with light household chores (a load of washing; doing the dishes etc) in a vain attempt to keep myself busy but resorted to a 300mg Gabapentin at 3:45pm. Felt it kick in about half an hour later, not quite as bad as the other night, however by 7pm I was so dopey I could not sit straight in a chair and had to lie down (BTW legs were still going all this time). I wasn't sleepy, just felt so dopey that I did not feel in control of myself....and I didn't like it one bit. I took the rest of my drugs at about 9.30pm and think I dozed off at about 11pm. Didn't someone say Gabapentin was supposed to be the best thing since sliced bread?????

Tuesday 11 May 04

I have lost complete faith in all my drugs and not taken a thing at all today, not that they would've made much difference as my legs started in at "moderate" at about 8.30am and have been "doing their thing" ever since.

I really really really really really really hate this thing - it has completely destroyed my life. I should be out exploring Mexico, Egypy & Tibet and planning a family. But neither of those things are anywhere near going back on the "to do" list.

My mum rang me this morning, I love her to bits, and she means well. She is against my trying to learn more about RLS (god help me should I happen to become more informed than the Neuro who has got me on nearly twice the recommended max. dosage of levodopa!!) and is even more against these discussion groups, particularly as our family has been brought up not to talk about our problems in "public" however the general public don't give a toss about anything they don't understand and afflictions that are not "visible" or "terminal".

Her solution to my problem is to go off ALL dairy products completely, which was something I was not up to hearing about. I have already resigned myself to the fact that I will probably not ever enjoy a bowl of icecream, or a thickshake or a cheesecake again....

So, one more, albeit small, emotional breakdown later (i.e. half an hour spent bawling my eyes out for no reason other than I'm competely fed up), I am at my literal wits end. I am utterly wrung-out, completely exhausted, and ache so bad from my hips to my ankles it hurts to walk.

My mum is probably on to something though....

As i've mentioned somewhere on these boards, I had undiagnosed severe RLS as a child. I can vividly remember the nights when I would lie in bed, thrashing my legs about because they were "tired". My dad would spend hours sitting beside me rubbing my legs, trying to help me get to sleep. I hated the 8hr car trips to Brisbane for holidays. My legs drove me completely nuts as a child and I was like a literal minature Grizzly Bear to live with - my temper was abominable - simply because I was so frustrated. I also remember being dragged to numerous specialists in Brisbane. Each one did the obilgatory blood tests, poke me, prod me and then say...."I don't know".

Eventually, my GP at the time (he was in his late 60's by then) suggested testing me for milk intolerance. Turns out he was on to something and I was put on a completely dairy-free diet. The results were obvious within 24 hours. I was back to being a little girl again. Grocery shopping took up to 4 hours though as every ingredient on every packet was scrutinized and if if contained anything that even looked like it might be a dairy product, it went back on the shelf. I was on a literal dairy-free diet until I was about 14, when as a teenager when I'd had enough of going to parties with my own little bag of goodies to eat instead of the candy and cake (dried fruit & nuts - oh joy!). Slowly we reintroduced dairy into my diet, with no major problems (legs in particular).

It turns out that I'd only had a "blanket" test done for the milk intolerance. I was never re-tested to find out exactly what it was in the milk that was causing all the problems. And, the thought of reading every single ingredient on every single grocery item we buy is not all that exciting (or comforting).

I have an appointment with my GP at 3.30pm this afternoon and, as you suggested Jumpy, am taking a concise summary of what's been going on. I'm hoping he's received a copy of the blood test results my Neuro ordered as I'm curious to see exactly what he tested for. I will try to keep the emotions in check (just as i've been trying to while typing).

My second opinion consult is Friday week (21st).....

For those who actually ignored my warning at the beginning, congrats for making it through unscathed, and thank you for the lend of your "ears".

Sometimes, the best way to make sense of whats going on in your head is to write it down....so I did...if none of it made sense, so be it.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Results of 3:30pm Doc Visit

Postby sardsy75 » Tue May 11, 2004 7:12 am

It's been over two weeks since my Neuro appointment and my GP had not received an update from him :? so he had no idea that my drug regime had completely changed :(

He was not happy when he saw that I was on nearly double the maximum recommended levodopa dosage.

So.....

1. I'm completely off the levodopa/carbidopa :D
2. I'm off the Zolpidem
3. I'm off the Anti-depressant
4. I'm to stick it out with the Neurontin :roll:
(300mg twice a day - afternoon & night)
5. I'm on to Diazepam :shock:
(5mg every four hours during the day)

6. The blood test results had come through: liver/kidney function....normal, iron...normal, magnesium...normal, a heap of other things that were....normal
7. He rang the path lab on the off chance that they hadn't yet destroyed the sample....they hadn't....and has ordered iorn, ferretin, B12, IGA & various other immuno levels
8. I go back at 10am on Friday for the results (and hopefully with much improved symptoms)

He didn't want to do anything radical in the way of introducing a new dopaminergic or reintroducing one already tried as he, like me wants to hear what the next Neuro says next week.

I got a real giggle out of him when I described the effects of the Neurontin as being like a "hit". He was like "but you've never taken hard drugs" and I said "I know, I'm just going off a bad Panadeine Forte experience I had where I was seeing things coming out of the walls". He just rolled his eyes.

Will update again in a few days.....hopefully with good news!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!


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