RLS AND DEPRESSION

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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status report, WHERE IS BECAT????

Post by jumpyowl »

I have been quietly fighting my battle with mental health professionals, so I am leaving neurologists strictly alone. I have enough on my plate.

Someone I know fairly well had General Anxiety Disorder (GAD) with some panic attacks interpersed with it. Over the weeks I watched her slipping into this never-never world. (psychosis). Eventually she started to loose touch with reality. Scary experience! Especially when one is borderline.

Fortunately, she is not my responsibility but one always tries to help. My counselor already told me that I should accept my limitations, but it is tough to be limited often by circumstances or even health care professionals!!! :shock:

I hope next time I can tell you more stories. For now my medications are as follow:

Wellbutrin XL 1x (300 mg)
Mirapex 3x0.25 mg or 2x0.5 mg depending on how I feel.
Ran out of hydrocodone but I can manage.

Exercise: 15 mfd on bike, it is easier to balance if I take of my glasses.

Side effects: some pain, some dizziness, a bit of vertigo. This is why I cut down on Mirapex (used to take 3x0.5)

Now to the exciting part: BECAT if you are around, please e-mail me private. I may have good news for you and eventually for everybody. I have to be careful so I am keeping it quiet for a while. Please excuse me! :oops:

I am working like crazy for the April Congress. That will be the start of the Ocular\ Surface Revolution.

My editorial is coming out in February. Anyone interested, let me know. It is about the tear film in Spanish but I have the English translation.
Jumpy Owl

cornelia

back in town

Post by cornelia »

Hey Jumpy, you are back! Still alive and working hard, I gather.

You make me very curious when you say that you may have some good news. Dis you find a cure for RLS? (LOL).Then you will get the Nobel Prize.
Becatt is with her sick grandma, who hasn't got a computer.

I am interested in the english version of your eye editorial. At least, for a family member who has been an eye researcher in Bonn. He has had a stroke,but is able to read.
Is that OK? If yes, I will send you my adress.

Take care, Corrie

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Hi, Corrie and all the other friends I hope still have here

Post by jumpyowl »

Well, the Madrid meeting has passed. Was rather exciting but pushed myself a bit hard, tried to work at night and lecture during the day, plus the jet lag.

I can certainly send you Corrie or your friend any of the lectures by e-mail. Let me know which one she would like.

On Sunday I had a bad experience with a nurse at an emergency ward. I took my daughter in with a severe bradycardia (35 beat/min.) We both were "fortunate" meeting a nurse who was so unprofessional that I can hardly believe it even now 2 days later. She was cruel, opinionated, stupid, and very unprofessional. She even appeared to have sadistic streaks in her. (She was apparently upset because of the painkillers she was on.) Sound familiar does it not).

I wrote a letter to the director of nursing. We shall see what she has to say. :roll:

I hope to be back, if not completely full time. Unfortunately I have had my laptop stolen in Spain, so I am short on addresses. (I even had to change my password here). So many people I have to reply and write....

The next one will be becat. :) I promise.
Jumpy Owl

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

What a long night

Post by becat »

What a terribly long night I had. Topping it off I have been unable to bring up RLS.org.
What a wonderful surprise to see my sweet Jumpyowl.....awww my heart beat a bit warmer with the sight of your words. For those of you that are new to the site......#25 on the current member list. He is our friend and one of the most intelligent people anyone could every meet. He is kind and caring, but serious and honorable. He is our resident Dr of choice. He's also one of us. We would be more than lucky to have you anytime you can. I hope we've done well by you in your absence. Your knowledge is sorely missed.

Jumpyowl is our : szeretett jóakaró, medikus tanácsadó (my best attempt at Hungarian)
szeretett............beloved
jóakaró.......friend
medikus........medical
tanácsadó.........mentor

Yes, I wait for your email. Tell me everything. I hope you are not worn out and are taking good care of yourself. Please, who watches over you?
I'm glad your back from Spain and so hope you were please with the presentations.

We have so much to catch up on. Lots of new people around the board, I think you'll enjoy them all. It's nice when it's active around here. The membership is growing daily, not sure that is a good thing, sad any of us have to find this place. However, I have to believe that the world is finally hearing about RLS and thankfully less feel lonely with it.
I won't ask about the survey, notice my self control.... :shock:
ahhhhh, I just so send my love and prayers your way. Lovely, just Lovely to see your name.
My hugs and love to you.

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Dearest becat!

Post by jumpyowl »

You certainly made my morning! How could I not immediately reply to you soulful lovely letter. And the wonderful Hungarian partial sentence! You outdid yourself! To prove it, here are my comments:

szeretett............beloved (perfect, you even got the double "t" right.) (Without it just would mean "love").

jóakaró.......friend (verbatim benevolent, close enough :) )
medikus........medical (actually a nickname for a person whose profession is medicine, it fit well, though).
tanácsadó.........mentor (advicegiver = advisor)

You get a hundred in Hungarian, Becat dear!

Well, I tell you (and others), what happened in the past few months. I looked at the opportunity of lecturing at the International Meeting in Spain as my best opportunity to change the direction of lacrimal research. Since I left academic research the direction slowly changed back to something weird (scientifically). The reason for that was that I invoked other less known disciplines (such as interface science, rheology, tribology, colloid chemistry) and others aiming for power could not continue in that direction. I was not invited for the workshop of the National Eye Institute in 94-95 - poor excuse was that I am not an M.D.) and ever since the science declined. Not only that but the patients were treated worse and worse. (Now after 20 years and several billion dollars later, dry eye patients are treated worse than RLS patients!).

Anyway this Spanish meeting by a society I was a co-founder of in 1984, was an excellent place to start my crusade. I wanted to try out a brain child of mine: to use computer animation to explain difficult scientific concepts that so far were not accepted by the research community.

This was more difficult than I thought. I received no support (only tried a couple of places), and the communication between a young Tenessaen and myself took longer than I had, even during the meeting I spent the night getting stuff from him.

I was also downloaded with organizational things like chairman, session chairman, etc. Jet lag, not sleeping at night, being active during day time finally took its toll on the last day. I did not give my last talk, but the audience were mainly surgeons, so nobody lost much and they were short of time.

I had my son with me for technical and other support. Still right after the meeting we were robbed (more by tricks than force). They mainly wanted my computer but they also took a camera. Both full of stuff of documentary value. Another scientist was also robbed but only for passport, and creditcards.

We took two card keys, both gone with the parking ticket, so we had to rent a car in Dallas (120 miles from my home).

It was tough but we survived it. Had to shut down, change numbers, etc. on many things. Some of my lectures I could recoup and I am working on the others.

I do not know whether I managed to awoke an interest but I am going after the main researchers personally especially at the grass root level.

Now, RLS and depression? Since I managed to mix day an night successfully, that apparently helped RLS and depression (if I even have that). Still I took when remembered Mirapex 0.25 mg a dose as well as Wellbutrin which I cut down to 75 mg 2-3 times a day/night.

I did sense a let-down afterwards (depression?). Fortunately, my wife and daughter are both doing better despite of my tomfoolery. And the work is not lost.

And I now will have some time for my favorite website. :D

Thank you, Becat for asking contribution to that survey website. It is very much in my plans and I still get request for the first results based on 120 people (California lecture) with the outstanding introduction by you Becat.

At present 136 people filled out the questionnaire on line. I am going to wait a while (hoping for 250) and then assess it.


Sorry for the long story, I was possibly trying to prove that people with RLS can also lead abnormal lives. Some will power is needed, however.

More later Becat, in a private e-mail.

Love and care to all.
Jumpy Owl

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Hi Jumpy, it's Jan

Post by jan3213 »

Dear Jumpy

It's been so long since I've written to you--I just wanted to say hello and wish you well. I ask about you often when I speak with Becat. I don't come to this Board very often anymore--newcomers don't get the "welcome from Jan" as much as they used to. <grin> I miss your posts, hearing from you, etc. I hope you are doing well and taking care of yourself. YOU KNOW HOW I WORRY ABOUT YOU. <wink> I want you to know what a difference you have made in my life, Jumpy. It's a shame that all of the newbies don't get the benefit of having Jumpyowl on here that we "oldtimers" did! Thank you for all that you have done for me and for all of us!

Fondly, your friend
Jan
No one is alone who had friends.

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Bradycardia

Post by jumpyowl »

Sorry to be neglectful, but my daughter suddenly started to have a heart beat as low as 35 per minute. She was also treated like dirt in the emergency room (the nurse thought she was a street drug taker).

I am taking her for a more detailed examination in the next large town, Tyler in a few minutes.

Thanks Jan for the lovely words of appreciation. :oops:

More later!
Jumpy Owl

Penguinrocks
Posts: 703
Joined: Thu Mar 17, 2005 6:03 pm
Location: Massachusetts
Contact:

Post by Penguinrocks »

May God watch over you and your family Jumpy and may God have mercy on the ER personnel!

Love
Penguin
Beware the Penguin

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Dear Jumpy

Post by jan3213 »

It's Jan

I'm sorry, I just saw your post! I hope and pray that everything is all right with your daughter. Your are most welcome, dear Jumpy, for what I said, but you have done much more for me and for all of us than you will ever know. Please, if at all possible, let us know how you and your daughter are whenever it is at all possible. And, please take care of you!

With much fondness, my friend
Jan
No one is alone who had friends.

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Bradychardia

Post by jumpyowl »

Well, I finally found a young lady doctor, who is quite a character. Still I probably overwhelmed her during our first visit. Everybody's adrenalin level was high, so my daughter's heart beat slid up over 50/min. The doctor was not concerned. So we unexpectedly paid her a visit next day.

I looked concerned enough so she invited my daughter in. Luckily, she had a severe bradychardia and also was listless and white as a sheet.
Now the doctor panicked and called a cardiologist friend in the closest large city. Result: Gloria ended up in an emergency vehicle again.

Despite some minor errors (like putting her on "nothing per mouth) then forgetting to take her off,) everything went well as the cardiologist was smart and conscientious. I was there to smuggle her some ice water, some essential medication, so she came through it fairly well. They actually released her near midnight, so my son drove her home (I was exhausted).

The result: her cardiogram was perfectly normal on all channels except abnormally low. This made them suspect some drugs especially the following:

1. EFFEXOR - the cardiologist said that this drug gave him numerous problems with heart patients and took her off this medications. We did not mind as Gloria had other fairly bad side effects from EFFEXOR.

2. PROVIGIL - Gloria only had taken this medcation for a few weeks with ambivalent results. One would not think that this drug by itself would cause problems but in conjunction with EFFEXOR - the effect appeared dangerous.

3. XYREM - the doctor did not really know this little used sleeping draught but replaced it with Ambien just to see what would happen.

Well, since then Gloria's vital signs became better, even tonight it was low; 57 / min. But usually it is higher. No more EFFEXOR or PROVIGIL.

Occasionally she takes Xyrem with no adverse result.

Since she does need something for mood stabilization, she tried CYMBALTA (60 mg) which also met with the blessing of the new family doctor (even though it falls in the same classification as EffEXOR. One of the side effects is having trouble with sleeping but so far it was not bothersome.

There are three of us in my family living together and I recently counted all the AD's one of us had taken or is taking now. The picture is scary:

Selective Serotonin Reuptake inhibitors: Prozac (only 3 days), Paxil,
Zoloft

Serotonin and Norephinephrine Reuptake Inhibitors: Effexor, Cymbalta

Noradrenegic and Serotonergic: Remeron


Tricyclics:
Elavil

The only group we have not tried yet (fortunately) is the ancient MAO inhibitors.

At present I am the only one who is not taking any. Discontinued Wellbutrin. And I am getting well along on Mirapex 3x0.25 mg per day only with an occasional hydrocodone.

I may have posted this somewhere in an a shorter form. If so please excuse me. :oops:
Jumpy Owl

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Bradychardia, OH

Post by jumpyowl »

There is someone in the woodpile (I am trying to be politically correct). More correctly there is something behind all these strange symptoms one family member is having. I am of not much help. I cannot even decide which doctor we should go to and when. I can see that they are just as puzzled as I am and certainly nobody is coming up with any brainstorm amomg all the health care professionals. The only change is that COBRA discontinued her secondary health insurance.

Let me first correct my own medication:

0.5 mg Mirapex 3x daily. It is barely enough. [ No narcolepsy lately. So as soon as find my wallet I can drive again. :wink: ] I will try to supplement it with some magnesium and potassium. I can sleep, occasionally with some help, but usually wake up to leg pain which can be dulled by Hydrocodone 10 mg.

I am off all the antidepressant and I am going to say good-by to the psychiatrist next visit. He tried, and pescribed two AD's Remeron and Wellbutrin. The new kid on the block seems to be Cymbalta, both my wife and daughter take it. I am not sure I am ready to try it.

Both Wellbutrin and Remeron caused additional pain and I could not observe any benefit, only when I discontinued them. I am still convinced that I am not clinicallly depressed.

Now the biggest problem. G. with the severe bradychardia reached a new lowest plateau, 33 beat/min. She is white, even her lips, and skin is cold to the touch. Her body temperature is a bit above 97 Fahrenheit. Speech is occasionally surry. When it is the worst, she cannot walk unassisted.

Over the long weekend (it is always on a weekend) Memorial Day she started to hallucinate, mostly visually but also music, voices. This is to the extent she was afraid to go to sleep because upon awakening there could be a couple of strange men in her room.

Cardilogist suspected three drugs as possibly responsible for low heartbeat rate:

EFFEXOR she is no longer takes it but takes Cymbalta instead.

PROVIGIL that does not sound logical but it is a strange drug

XYREM it is so short acting and I am unable to collerate e.g 12 hours apart between cause and effect.

The night before last night I spent three hours staying with her (reading in an armchair). To me she was having difficulty breathing as if she had sleep apnea. Lifting her head helped some. Turning to the right side also helped. When she restarted her breathing she usually mumbled some words and probably was at stage 2 - slept very superficially.

Before she started to take Xyrem, she had a sleep test that ruled out sleep apnea. This is why she was permitted to go on XYREM.

As I left her this morning at 5 she was taking a muscle relaxant for leg cramps and was ready to take another try at sleep. Last night I told her to take 1 mg klonopin and interestingly this night she had no hallucinations. Her stress level also lessened.

Well, we will see her physician today. I cannot expect much help but she should know about the hallucination and the new record in heartbeat rate.

How was your night? :?

Love and concern to all, especially to those who are suffering!
Jumpy Owl

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Jumpy, I read with interest, your post re G.................

Post by jan3213 »

It's Jan

I am going to a new neurologist who just did a complete workup on me. Here's what meds my former neuro had me on for RLS:

1 mg. Clonzepam daily
5 mg. Mirapex dailiy (I only took 3 mg. daily because I knew 5 was too much)

My former neuro dxed me with fibro then refused to treat me for it. We "butted heads" over a few things, and after seeing him for over 15 years, I fired him.

I am now going to a new neuro who, after hearing my symptoms, decided I needed a thorough "workup". I had a lot of lab work done (8 vials of blod tested--everything from lupus to RA), he did a nerve conduction test, and I had a sleep study. He also told me that 5 mg. of Mirpex could have given me a heart attack. He said I was very smart in only taking 3 mg. That was still a very high dose.

One of the blood tests came back positive for RA. He's having another one done (RA Factor). I have other symptoms for RA.

Here's the point I want to make. My oxygen level drops quite a bit at night, but I don't have sleep apnea either. He's concerned about that. He wondered if I have ashtma. I have had slightly in the past, but not to the extent that it would cause me problems (I don't think). He also wondered if the Mirapex would cause the drop in oxygen. He's ordering a pulmonary function test. I have had an echocardiogram which was normal. I slept from 10:30pm to 12:30pm and reached stage 4, but thereafter, woke up every 1/2 hour and had 11.5 leg movements every min. and that was on the following meds: 1 mg. Clonzapam and 1.5 mg. Mirapex. I have chronic pain in my joints 24/7 and it hurts to even turn over in bed. That contributes to my sleelessness. I also have a pinched nerve in my back and have had an MRI last week.

The purpose of this post is to tell you about my oxygen drop at night. I don't hallucinate like G does. I just thought this was interesting.

My best to you and your family. Take care. My thoughts and prayers are with you.

Fondly,
Jan
No one is alone who had friends.

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Hello, Jan:

Post by jumpyowl »

Thanks for sharing, Jan. Such enlightement always help, like mozaics add to the whole picture. There are several useful relevations in your post.

I have had some insights over the past weekend concerning the whole family. Most professionals know that, although the sitation is better now than 20 years ago, still there are only a few really good psychiatrists around. But when there is one, he/she is worth their weights on gold.

Hallucination is a huge and complex topic, mostly because too much has been written about it by people with narrow vision. One thing is for sure, serious viual and auditory hallucinations have to be taken seriously because it is a sign that the brain does not function right anymore and our senses misguide us so the brain cannot be trusted any more..

This is scary, and if the cause is not detected and corrected, it usually can get worse. First one may hear music, then one start to see things and persons. They may be strangers but if they are with someone all the time, one begins to pay attention to them especially when what they say can be understood. They can even control one's behavior as the brain gets to be less and less capable of providing a rational view of the world around the patient. And this is when tragedies can happen.

Depression is an overused umbrella term for lack of more specific diagnoses in the field. If possible one should attempt to diagnose the mental problem more specifically. There are many "antidepressants" on the market. The mechanism of action usually is not know, but due to the dirth of specific diagnosis it is not much hindrance.

So back to the trial and error with AD's but with a capable and caring psychiatrists. Under the circumstance I see real danger with doctors who are prejudiced in favor of some antidepressants and describes those religiously regardless of what the real problem is or while not knowing what the real problem is.

I finally had to come to the conclusion, guided by a brilliant and knowledgable mental health worker and one of those rare doctors, that if one's brain can give you misinformation on the world around you and control your behavior, it can also influence how your organs work. There are some notorious examples with the GI tract but the cardiac system is also very much indicated.

This leads me to my new belief that the brain can will one to die. Suicide is usually the quick way if one is so inclined but it does not have to resort to that. Chronic anxiety can certainly cause heart arrythmia and very slow heart beat. It can also cause heart attack and possibly induce a heartblock, especially with the "help" of some brain affecting medication.

There are several personality types and depression or anxiety can instigate various forms in behaviour. This makes diagnosis much more difficult. BUT if one limits treatment to various symptoms without trying to manage the underlying cause that will not provide long lasting relief. Or any relief in some cases.

I am also getting off my high horse. Despite various clinical signs and antidepressant prescriptions (tried and discontinued) I was convinced that I do not have clinical depression. Then may be true but it is not the whole picture. The fact remains that most of the time I am under terrific stress. Being a Type A personality adds oil to the fire. Whatever my emotional mental problems may be, the stress will take its toll and it may show up in various forms some may not even have names.

I will never push myself as hard as I did for example before and during the International Congress in Madrid. That certainly took its toll and the health problems of the family keeps the pressure (stress) on.

My wife is much better but having two more sources of stress in the family limits her well being. Now I will change the treatment of "fibromyalgia" of my daughter from symptomatic to going directly to the root of the problem. This I believe is anxiety based. She is nonconfrontional and intravert so it took me a long time to see the light (to give credit where credit is due, my wife had seen that much earlier than I ever did.)

I even decided to take care of myself :shock: as clearly my limitations have been reached. I hope to get to the point where I re-gain my productivity and finish some of the theoretical work. The health of the whole family comes first, however.

Sorry for the long and probably incomprehensible expose. I am still at the discovery stage. Will report progress or experiences as they warrant them.


Jan, have they determined the different ANA's in your blood? These antinuclear antibodies are useful diagnostically, although some, like the the random speckled pattern is not really known well. Gloria had that several years ago in the early stages of her affliction.

God bless you all!
Jumpy Owl

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Dear Jumpy

Post by jan3213 »

It's Jan

Thank you so much for your explanation and reply. As far as determining the differenet ANA's in my blood, Dr. Nenami gave me so much information during my last visit, I'm afraid I was a bit overwhelmed. He is a very caring, kind man and I know that when I see him again on the 23rd, he will be very glad to go over anything I ask him. And, believe me I will have copious notes. He is not the kind of physician who only give you a few minutes. I have seen him two times and he has spent a minimum of 45 mnutes with me each time. I believe, from what I have been told, that is not unusual. I have found a doctor who listens, who cares and who is going to PARTNER with me in my care. So, I will certainly get the information I need and I will relay that information to you, my friend.

Thank you so much for your concern for me, even in midst of your own problems. I'm so sorry you are going through all of this with your own family, Jumpy. You have been such a friend to me and to many here on this Forum. We all treasure you, you must know that. I wish the very best for you and your family.

May God bless and keep you.

Jan
No one is alone who had friends.

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
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I have been to the loony bin!

Post by jumpyowl »

For a whole week. I am leaving for Tyler again in a few minutes but have a lot of stuf to tell you all. Bruised but not broken. Has anyone taken Geodon???? An antipsychotic? Do not, if you are also on a dopamine agonist such as Mirapex. Bad trip all around!!! How easy is it to get accused with homicial ideation! etc!

Coming up with the detailed story soon, if anyone interested!

Also Gloria's heart problem and fibromyalgia pain problem may both be resolved via ressolving the underlying deep anxiety. :oops:
Jumpy Owl

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