I suffered with this for years before... - Restless Legs Syn...

Restless Legs Syndrome

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I suffered with this for years before I a friend said she had heard of this and found out the 'thing' was an actual syndrome with a name!!!

Hellybellyjelly profile image
14 Replies

It is mere coincidence I suffered only last night and came across this website today. It's been interesting as dopamine is mentioned and I take an antidepressant containing the said drug! I will behaving a conversation with my GP soon. However,a colleague

Told me recently that her elderly mum suffers with RLS too and uses a rather surprising gel. If anyone is interested in this then take a look on the website of Feathergills Emporium & search Restless Leg Gel @ £5.50 a jar. Its based in Hebden Bridge.

I've no idea if it will help but I'm about to order online. At that price it's worth a try.

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What antidepressant are you taking....never heard of one that contains dopamine...??

I take the drug that causes RLS, I switched to organic paxil and I am not sure if

that is causing rls..I have a suspicion that it does..I am working on coming off it

but the symptoms that caused me to take it are returning, hugely..I don't really want

to switch because the other ones have nasty side effects...I feel like I have to pick

between 2 very bad choices..staying on Paxil is probably going to win this war...

The panic attacks run in the family..or at least I bought into the idea that it's true..

Allergy testing , MRI, CT scan of the brain, the vessels in my neck, to my heart and

blood tests told the doctor and specialist that yes, the tiny benign tumors on my ear

nerve may actually be the problem but I sure don't want to lose my hearing...so I am

keeping them since I was 34 yrs old..Paxil just seems to stop the spinning sensations,

the dizziness, the feeling like my body isn't connected to my brain, the brain fog, the

sick tummy and gives me a second or two longer to process my thoughts...my brain

slowed down long enough to make a better decision, to stop the stimuli and busyness

of my head..so I am scared to death to just get rid of it..the busyness starts up again..

and I feel off balance, dizzy all over again..I can't even function without it..it seems. that

fight or flight kicks in so bad for me that I've already felt like I can't go out in public..just

talking my pill stops that entire process every day of my life and is reliable as can be...

in reply to

This is really important to me for you to know if you do have panic attacks.

some of the symptoms are as I described before..for me, my heart starts

pounding during one of those attacks, No amount of slow breathing or focusing on a point, or going to my special location in my mind will stop me

from feeling what's happening to my body in those times..If I tell myself that

it's just a silly panic attack..and that I will get through it..but when I try to fight

it, soon I feel it in my chest like a caving in symptom..No one around me knows that it's going on..but I want to get up and run away from the symptoms but how do you do that...so the muscles can tense, breathing gets more intense but it's shallow breaths..so that's what makes me think that I

will pass out..I've tried making myself pass out...I've said "come on, give me

all you've got" and I challenged it..but I still ended up on Paxil...it started to

change who I was completely..I became a complete homebody..I was a prisoner in my house...and if you ever reach that point, I hope that you or someone that loves you gets you into the emergency room of the hospital..

Some days I went 3 times. I was sure that it was a heart attack..something

more serious...It took a special nurse, not a doctor to talk to me in a way

that I understood what it was, and how to deal with it..for me, It took a

behavior specialist along with medication...I came out of it a better person

and so many times when the doctor tells people that they are fine, to go home, or they have no idea what is wrong....but their heart is fine, it's a

panic attack..anxiety attack...

I brought it up here today because there are some people that are on

this forum who are hiding out because they have this going on...they

never feel that way in their bedrooms or their house because that is safe.

The symptoms can be severe enough that people refuse to go to work..but

they gave up on going to the doctor...So ending your life hiding out is no way

to live..I lived that life for months, up to a year before that one nurse told

the doctor what was happening..also a neurologist had the right diagnosis

but we never followed up on it..she sent me home with Valium until I could

see my primary care or GP..Paxil changed my life...and there are some other

drugs in that class that will work but they make you gain weight, tired...I don't

want to spell it out directly to those who are suffering on this forum..I do

wonder how many more suffer this kind of anxiety...panic attacks..and do

they talk about that anxiety as a part of having conditions that interfere with

our sleep cycles, our attitudes, the bills that come in when you are too sick to

work...the fact that no one listens to you when you describe RLS to them...

Someone told me that anxiety is born when you live the life that you have and try to live the life that you want so badly..or when no one understands you..

XX Karen

Yikes have you tried any of the RLS friendlier antidepressants, i cant remember if you have or not.

in reply to

I switched over to an organic Paxil..I also tried another favorite..Zoloft..

the rest is not even a consideration for me due to the side effects..I've

known people to gain so much weight on the others and they were walking

dead zoned out..Paxil actually made weight loss simple for some..and it

doesn't make many people very tired or awake..in fact, more do stay awake

longer because of it so I have a double whammy...both are problems for me.

It's hard to believe but not one single doctor put 2 +2 together..on this.

I know about it and if I complain, they offer me sleeping pills or narcotics

to balance it out..I am not a fan of either. XX Karen

For me, I take my paxil by 4am when I get up for work..you would think by

9pm, it would not affect me..or so I gave it that much credit..I have done

the extended version of paxil..that one kept me awake for overnight and then

some..it's a lousy awake..it's like sudafed or a strong decongestant effect..it's

a burned out kind of awake..

in reply to

Panic attacks (over nothing) are right up there with RLS in terms of suffering. Your only job when you're having one is to survive. Hang on by your nails, do every trick in the book. I wood splash cold water on my wrists and face or if I was on the train I would apply make-up ever so slowly and carefully. My panic attacks were like a bell-shaped curve and I always carried Klonopin with me which at the top of the bell curve didn't seem to provide the relief I wanted. It's after the panic attack is over that the real work begins. That's when you have to start to shift your perspective, however slightly. Impossible to do this during an attack. We should have been taught this when we were young. That we all came to this earth to learn....soul schooling it's called. And "only the bravest of souls come to earth to learn." Anxiety and panic are friends in disguise - I wouldn't lie to you Yikes. When you do stop the Paxil, maybe the doctor would give you a quick acting tranquilizer to help you over the hump. If you do the "post attack" work, it will be some of your finest moments in life. If you have the chance, read "Dancing the Dream" by Jamie Sams. She writes: "In our Native American tradition, we see the Dark Nights of the Soul as rites of passage, initiations that call us to respond in ways that ultimately temper/strengthen the warrior nature contained in the human spirit. Any woman or man or child on the Earth can embrace that bravery within themselves, "counting coup" or experiencing a victory over the Dark Night of the Soul simply by surviving, knowing that they have done the best that they could at that time. Accepting these difficult rites of passage allows us to be brave, to take courage, and to acknowledge the warrior nature of our spiritual essences. If we act from our warrior nature, facing the issues at hand rather than shutting down during harrowing times, we will not have to repeat the difficult lessons that life uses to force us to confront unpleasant issues. Then we finally begin to understand the hidden strengths of our personal Medicines.

Once you are able to survive and shift your perspective on panic attacks they will never return, at least not with anywhere near the force. It's like getting over your fear of the dark when you are a child. Everyone once and awhile the darkness will get me but I LOVE the night and the dark and could no longer imagine a world without my dark Friends. Now if only I could go on those huge roller coasters with my son ;)

in reply to

How about when you are in a meeting at work...I can't wash up

or apply makeup...I've been called on to speak during and

immediately after..I've been in the middle of a presentation and

it's started...saying that I was sick wasn't an option...

I saw your post on the dark night another time before when you

explained that you and your son were both warriors...I read it in depth and can agree that the purge and cleansing of the soul helps make

more room for Good stuff..in the work that I've done, still am doing to

let go of the stuff that's hurting me hasn't reached the panic attacks.

Once the heart starts pounding and I get dizzy or have that falling over the shoulder feeling, I know what will happen next...and I fight it....

Xanax doesn't work quick enough..the panic attack doesn't take

much time to start up, then go into a full blown attack, then another..

My attacks are severe lasting for 3 mins to 10 mins...by that time,

the xanax kicks in and it's done..xanax makes me sleep sitting up

in a chair..that is a problem for me, especially when I must be

on my toes ready to react or to perform and answer instantly. It's

the Only thing that holds me back from being a RN again. I am

thinking of signing up for March to refresh my RN skills...it's a

requirement..so I am excited ...glad to share that with everyone.

in reply to

Wow, 3 to 10 minutes....you are very good at righting yourself!!! Mine could last for an hour or more and so extreme. I'm amazed that my heart held out against all that adrenalin. It is really a mind **@#! - if you know what I mean. It was a slow process to be able to step back away from it and look at myself from a distance. I was very tempted, many times to go on daily medication, but I knew that eventually I would have to face this anyways. And I am sure there are no shortages of future painful experiences. Yikes, you will know when the best time is to face your life altering events. Clearly not when you're working as a nurse. I truly believe there are no accidents or coincidences. Not everyone will get panic attacks in their lifetime. I did and had to. Like I said, if we were all taught as children that these things were coming down the pipeline it would be a whole different ball game. So now you have to teach yourself and your children and grandchildren that everyone has a sacred path. That path is created by the weaving of many tangible and intangible threads. Life is urging us to change and grow Yikes. So much better than stagnating. It is part of an "awakening process." Some people go through life believing that there is no scheme, no rhyme or reason, to the working of the universe. They see no connection between themselves, other life forms and creation - until some life event forces us to go beyond that unconscious condition. Psychiatrists should be congratulating their patients when these events arise and promise them that they will work through it together rather than labeling it a disease and pathologizing it. Well let me be the first to congratulate you!!!

in reply to

Panic attacks. wake me up, they come when I am supposed to be doing other things..just like RLS..everyone can understand Panic attacks just by having RLS...they are random and come on lasting for minutes, hours, days...some are more wicked than are others...the good days are few.

Pramipexole and Paxil work..fast..we get dependent on both of them..I have both..I wonder if that whole

part of the brain is missing the same thing..maybe it's not serotonin..maybe it's not dopamine..maybe something is attacking our receptors, it happens in

diabetes, thyroid, and other such diseases...why do our receptors fail us? There is no measurement of

dopamine, serotonin...we guess based on symptoms.

Now we are finding that both run in families? Does

behavior modification stop RLS or Panic attacks?

I haven't found it to be completely true...but psychologists have taught me to cope with each disease...all have dug deep into my life's happenings..

One was successful in extracting those big negative events but both still exist...both have about the same

cure rate..it's learning to cope that is the focus..

in reply to

Yikes, you're probably just old enough to remember Kung Fu. There was a blind master in the program. I will always remember one of his lines "Fear is the greatest darkness." My panic attacks were not born of my body or mind like my RLS. If anything my panic attacks were a gift from above to help me to cope with what is physically thrown my way. I have something called a schatzki's ring in my esophagus. My esophagus is about 50% less in diameter as a result. Until later in life it was asymptomatic. Now food always gets stuck but eventually moves on. Initially I would panic (not a panic attack because this is something real sort of) and I had to immediately run for the klonopin. Eventually I lost the fear. Now it's a nuisance and I should probably go in and have it dilated. But the point is, fear, panic, anxiety, in MY life, is not related to brain chemicals. Nor is my happiness, joy or sadness. Those things I believe are part of our collective universe and are at our disposal to shape our lives and lead us down new paths. And we must, at all costs, teach our children what is coming their way, because no doctor or school teacher will explain to them about (to use your words) that we are souls inhabiting a human body. That none of this is quite real. And that the Universe and eternity is not so much "out there" as it is "in there." Happy trails Karen.

in reply to

I don't know how to teach my kids to ward off panic attacks..the heart beat increases to around 119 and after 10 seconds of that, Panic Sets in...it's always in that order..the cardiologist and the second opinion one said, "Jeez, why try to fix it if Paxil is working" My heart wasn't the problem.

When on Paxil, I don't even have to try, I NEVER have panic attacks..not even a tiny bit..I would stick to Paxil and never argue but if it is the thing that is giving me RLS, then it's decision time.

I can't get away with taking less...taking less of it mean RLS and Panic is there... My doctor told me ALL of the reasons that he has ever prescribed Paxil...and he tells me that very very few have RLS at the same time...so I am the lucky one..his vote

was to keep on the Paxil..treat RLS with meds because there is not really

another good alternative for me...when I go in for that doctor appointment..I bring family along plus my mom and sister..The doctor asks them questions about me..every one of them said that I am easy going on it vs without it..they all feel that the benefits outweigh the negatives...I haven't questioned it until we started talking on here more..Lets face it, Paxil does more than take care of panic, it numbs feelings..as it was designed to do..so yes, I see what you mean...=)

in reply to

I am the other unlucky one. Remeron ( the tiniest amount) worsens my RLS. I cannot stand the restless body feeling all night long. Tough call between which is worse - panic or RLS. For me it's the RLS. But I might be saying that because the panic attacks have passed. Almost like childbirth where the pain memory fades. My panic attacks were sheer lunacy. All I can do is shake my head even now as I think about it. You'd think I was literally facing a saber toothed tiger. The klonopin was no match for the tiger. But I noticed that with every panic attack, in which I didn't take klonopin, I was rewarded with a slight rush of bliss when the attack passed. I guess it was my reward for having managed to chase off the tiger for a day.

Young kids have this real interesting innate ability to tune into the ways of nature if given half a chance. We, in our modern society, never give them that chance. We drug them instead. There was no way I was going to allow my son to think panic attacks are a disease or abnormal. When I explained to him the path that a warrior must take, including surviving that anxious feeling when you're in the dark of the woods, he understood and accepted his fate. Only after that little piece of wisdom it seems that his spirit guide decided he had passed that particular test. There will be many more tests coming his way. I have told him that. And he must face them, mostly alone, but he knows that I am there and that unlike his friends and even his father, "nothing human is foreign to me (Maya Angelou)." He also knows that each test is like an inoculation and he won't face that exact one again once he has passed. He now loves the darkness of the woods and sleeping under the stars and I truly believe he always will.

So I say the same to you. You do not have a disease and you are not abnormal. I cannot advise you in terms of Paxil. I know what I would do, provided I didn't have a heart condition, I would scale back on the Paxil on a good day, knowing I could always ramp up again. I would face the tiger (with Klonopin in hand). And face him again a week or month later until slowly, very slowly, I see that it's just a kitten which I can readily handle.

Anxiety and depression are all around us....all of us, all of the time. And joy probably is too, only it seems much more elusive. But we knew this, long before we were born, yet we still agreed to inhabit our earthly bodies. What I can't believe I agreed to was coming to a place with such unimaginable evil. Child molesters, rapists, murderers, Hitlers. Isn't disease, famine, plagues, typhoons enough in terms of "soul schooling." When I leave this earth I will have a few choice words for the creators.

in reply to

The beast needs to be challenged, maybe so..Your story is a good inspiration..=)

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