My RLS Mountain....

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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becat
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Joined: Thu Apr 29, 2004 11:41 pm

DUH

Post by becat »

n/a
Last edited by becat on Mon Dec 28, 2009 2:14 am, edited 1 time in total.

jan3213
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Post by jan3213 »

It's Jan

Becat--Did your sleep doc voluntarily give you the report from your sleep study? I barely got any information from my doc after mine. I would like a copy of my report, also, and I have a right to it.

I think I'll ask him for a copy when I see him next--or maybe I will just call him tomorrow. hmmmmmmmmmmmmmmmmm

Hugs
Jannie
No one is alone who had friends.

becat
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Post by becat »

I take copies of blookwork to him and he expects that I want own. I'd ask, it your results. I keep as make of that stuff as pobbisble.
After the explanation I also was told to raise me iron doses on iron and magnisuim as well.
I'm pretty concerned about this doxipin (sp?). It's warning list is longer than reasrch papers I turn in for school work. They will be on my mind with every single drop I take. Fear not, I'll this all out with my buddies aroud here,
UUffffaaaaa meds kicked in and typing is a bit hard to fo,
So I'm down for the night.
Hugs to you all.

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jrowley
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Post by jrowley »

becat I think that is the same med my doc just put me on for a sinus problem and I could only stand it for about three days and had to quit taking it I got no sleep at all.

becat
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Hi there

Post by becat »

n/a
Last edited by becat on Mon Dec 28, 2009 2:16 am, edited 1 time in total.

ViewsAskew
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Post by ViewsAskew »

Hmmm, I'd be hard pressed to stick with it, too, Becat. Jan had trouble, it's listed as something not to take, there are the side effects, you didn't sleep well, you feel more pain today. This is such a sticky area where you have to decide to listen to your gut or your doctor's logic, but aren't sure if it's your gut or your knowledge that is saying no. Not sure I said that well, but I understand how difficult it is.

I would do anything (just about) to avoid the days where I start thinking about the future in that kind of way. Hope you find a way from there nice and quick.

Ann

jumpyowl
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Hi, Becat!

Post by jumpyowl »

I am puzzled by your medication. :?: First of all, it may be doxepin hydrochloride. Is it? Then the dose is very low, 1 mg? The syrup contains 10 mg/ml I believe. So 2 drops (100 microliters) may contain 1 mg.

The mechanism of action of SINEQUAN (doxepin HCl) is not definitely known. It is not a central nervous system stimulant nor a monoamine oxidase inhibitor. The current hypothesis is that the clinical effects are due, at least in part, to influences on the adrenergic activity at the synapses so that deactivation of norepinephrine by reuptake into the nerve terminals is prevented. Animal studies suggest that doxepin HCl does not appreciably antagonize the antihypertensive action of guanethidine. In animal studies anticholinergic, antiserotonin and antihistamine effects on smooth muscle have been demonstrated. At higher than usual clinical doses, norepinephrine response was potentiated in animals. This effect was not demonstrated in humans.

At clinical dosages up to 150 mg per day, SINEQUAN can be given to man concomitantly with guanethidine and related compounds without blocking the antihypertensive effect. At dosages above 150 mg per day blocking of the antihypertensive effect of these compounds has been reported.


It does have a antihistamine-like side effect. Is this why you take it? Of course, antianxiety and antidepressant effects are why most people take it.

I learned to have a lot of respect for antipsychotic drugs first hand. I also noticed that posts are beginning to appear where the attending physicians are prescribing such medications to RLS sufferers.

Still, sleep tests are mostly done to prove the presence of sleep apnea. You hade a few negative peaks in your haemoglobin oxygen saturation levels but the average was sufficiently high. Good thing, because I do not think you would like the "cure" for it.

Let me know the true name for your medication and your dose for it. (Starting dose is 75 mg/day). And the precise reason it is prescribed. It is amazing that doctors who would NOT describe any effective painkillers (mostly narcotics) will readily prescribe antipsychotics.

Please let me know . I worry! BTW I am off my antipsychotic (DepaKote) for three weeks now. I do not miss it at all. 8)

((((((0)))))
Jumpy Owl

becat
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oooo My

Post by becat »

n/a
Last edited by becat on Mon Dec 28, 2009 2:15 am, edited 1 time in total.

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jrowley
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Post by jrowley »

hum I guess I wasn't taking that drug but one simular mine was in pill form and you took it twice a day. But it was a combo drug of antihistimins and decongestant and it kept me up all night. So I took it for a couple of days till i could tollerate my sinus again then I quit taking it cuz the lack of sleep was affecting me and my work. With the hubby layed off and only me working I cant afford the days off so enough for relieve was good. However I see the pain that we all have how can you win if you get sick rls is worse somedays seems to be a loosing battle. Like my uro had me try a lodpa combo drug and it didnt work so I havent taken anything for two weeks till my app on tue. And then I'm sure if I want anything as everytime I do take something it seems I was better before ever knowing I had this darn syndrome.

Anyway I hope your feeling better bcat I know I am.

ksxroads
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Post by ksxroads »

:o Goin' to find me a mountain, the highest mountain, jump off nobody gonna know... just finished reading RLS mountain again. Can't you see Can't you see what this disease is doing to me... can't write a song, yet I can usually do fairly well changing words to fit my needs!

First time through I was frantic like trying to look up an emergency number in the phone book during a crisis. Today was much different. It was a time of empathy, reflection, acknowlegement, acceptance. I cried, I found hope, I found love, I found humor and I cried some more. Tears of love and comfort.

Sending ********positive thoughts to all********** and much appreciation for your continued sharing. I am keeping you all in my prayers and holding you close to my heart.

This asthma/allergy/breathing is a difficult one to tackle given the RLS. Guaifenesin the chemical in Mucinex... is it among those chemicals that affect RLS? My friend who has fibromyalgia takes it daily to reduce muscle inflammation and movement of mucas for her asthma. Just a thought.

(((BIG HUG)))) Hazel

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Hi Hazel

Post by becat »

Hi Jan and Hazel,
Jan this is actually an antidepresant and I use it in liquid form in a mini dose. Like 3 drops of it, very diluted. It does wonders for my sinus, but don't like what's it's doing to my legs. I can't use it everynight or several nights in a row. i use it everyother night. I'm playing with it right now to see if I can find the trick. It is bad for RLS, but I'm no where near the lowest or avg. dose given for depression. I'm testing it so to say.
Yes, I've used Mucinex as well. Just doesn't do the job as fast or as well, but anyone with sinus knows that it's a constant battle. Just not much out there for us RLS suffers to use.
Hazel,
Thank you for the warm words and the positive thoughts. I was a worn woman when I started this thread. I had just had what I could take and found my fight. yes, I believe that RLS has been it's own (yet, twisted) blessing for me. Who knew, I woud find my calling in my own suffering. It's only important to see that you can fight for yourself and your body and win. I find hope in this thread....even if it's just my own.
I'm still doing pretty well with my medications. Can't wait to see what normal temps and a little winter does to me. I'm better in the winter. We'll see if it hold true and I can lower the doses some. I'm crossing my fingers and praying.
Hugs to you all.

Guest

Post by Guest »

Since the dr Hodges is so kind to not think I am a junkie or hypochondriac, and acknowledge my RLS - it is difficult for me to dispute that he also thinks I have fibromyalgia.

First let me say, for many years a co worker's wife who suffers from fibro has tried to convince me that is what I have. To some extent I can see the similarities of symptoms, it is possible that I do have fibro. YET...

I find your comment B - I do better in the winter... Dr. Hodges said to me Winter must be difficult... No I actually do better in the winter. My symptoms seem to get progressively worse beginning late spring through fall. High humidity and heat affects my daily quality of life tremendously.

Of course medications I would use more in summer contributed to the RLS as well.

Durint the winter I usually go to sleep earlier. My late afternoon and early evenings in the winter hours are a lot less stressful! hahahaha Summer is full of yard work, yadda yadda yadda.

Dr. Hodges in our conversation talked about fibro not being progressive... okay but my problems seem to get worse as the years go by... that could be a result of inadequate management of both the RLS and Fibro.

Regardless, I am truly blessed to have found this site. After spending so much time exploring other areas of the internet, I realize we are so fortunate to have you all as our *mentors*.

I may give the Mucinex a try for the time being. With ragweed, plowing, spraying going full blast here on the plains, I Have been using flonaise, and the advir daily, and taking precautions and deep breathing, praying that I don't have to use the allbuterol inhaler.

As for that rowing - I've duct taped a weed eater engine to that oar... it helps keep that hope churning Red Green would be proud... Hazel

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Wonderful

Post by becat »

n/a
Last edited by becat on Mon Dec 28, 2009 2:17 am, edited 1 time in total.

ksxroads
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Post by ksxroads »

How goes the dosing? Breathing leg breathing leg... gotta say I'd go with breathing! *BG*

Couldn't sleep for a while last night, so watched a couple of Red Green shows I had recorded. I think that the weed eater engine would be just the right amount of vibration... more than that would probably set us spinning out of control!

Thanks for the insights. My daily pain is primarily leg and arms, in the last few years upper right back up the neck, not as intense on left side. It is possible that the fibro is more related to the back, knees, neck... as from what I have read these are trigger point areas. Initially the sternum area of my chest was an indicator of bad times to come. Took to wearing front closure bras so I could whip it loose! hahahahaha

My most frequent question to doctors over the years has been why do my legs and arms get so bad... one day I'll be able to toss the hay to the horses and then days when it is a major accomplishment to walk to the barn. Compensation... I have both big bales and small bales. small bales for those times that even a flake off a big bale is just too much to carry.

They usually just shook their head and went on to something else.

There is so much to learn about these diseases, it is understandable that drs are limited in their knowledge. The simplest gift of direction, and encouragement to keep *iinterviewing* doctors till you find one who will listen from the people on this website is truly a blessing.

It is going to be quite a utility bill this month... during the full body crisis, I cranked the air down and piled on the quilts. Freezing the entire body was only temporary before having to do it over again, yet it was the relief that kept me from jumping ship.

Gardening is something that keeps me happy. I can crawl if I have to ... though the flower beds have been somewhat neglected lately. Will came home last monday, and has been roasting peppers for me! Tons of peppers.

Wheezing has been plaquing me last two days. Used the A. inhaler yesterday. Doesn't help that just down the road from work is an alfalfa mill... allergist said I was not allergic to alfalfa... IMHO I think he should have tested me for the doseage those of us who work here are exposed to on a daily basis for nine months of the year. hahahaha

Sending clear clean inhalations your way.... Hazel

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Hi

Post by becat »

n/a
Last edited by becat on Mon Dec 28, 2009 2:17 am, edited 1 time in total.

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