Nights of Terror: Days of Brain Fog

I am walking down a path that is untrodden. Not much data is known about switching from drugs to a VNS unit. A VNS unit simulates the brain to produce serotonin.

Messing with the levels of serotonin produces anything from terror dreams to deep depression. But the VNS device produces a strong shock directly to the brain. Drugs do it slower. It has been less than a month and I can see some results.

Terror dreams start about a week before a downfall. I am having them all night long now. Dreams of losing abilities such as simple brain functions and inability to do simple tasks such as using a phone to call for help. An inability to get help and foggy brain. As I go along the dreams usually get worse. They involve movement. Now I have a rail on the side of the bed to keep from rolling off and hurting myself.

I have a job to maintain. Terror dreams of the nature above do not seem much. But this is the start. I have a been there before. I want to feel somewhat in control. I will go slowly. I have two doctors on my case now. They have told me that they don't know much either. The company that makes the device no longer has the nurse I was working with in 2008.  Not knowing what I am getting into is also frightening. Last time, before two mental hospital stays, I did not know what was ahead. I really don't know now, but I have some inkling. I pray for God to lead me. And if you who are reading this are a praying individual please pray for me.

Latuda

Yesterday while I was looking in my 'this drug doesn't work' bag I found some Latuda. When I looked in this blog I found no mention of Latuda. I would have brought this up to the doctor if I had remembered. That is what this blog is for. Arrrgh! That and spreading the word about how things effect me.

I am going to have the VNS (vagus nerve stimulator) device adjusted. Perhaps it will help me at this time. It seems not to work anyways. The adjustment will happen on the seventh. I will document it one way or the other. The last time I had it adjusted was right before my 2011 hospital stay. That stay was for mental health. I felt good for several days. But it was too strong because it caused increased appetite. I had to eat every hour even throughout the night. I had to eat or the metabolism caused me pain. I had to reduce the device down. We will see what it does this time. We will work at the adjustments more with more patience and perhaps it will, at 100 dollars a pop be adjusted correctly.

Latuda effects

I was put on Latuda about 10 days ago. Now I keep wanting to move. I am up writing this because I want to move around constantly and typing seems to help. First it was my breasts that hurt as if I had eaten way to much caffeine. So the method of breast massage was employed. That seemed to help vastly. Anything to stop the misery and pain. Now the inability to stay still. I am waiting for the side effects to get worse.
I am waiting to go to the doctor for the VNS.  He is a neurologist and usually works with epileptics. I was not there since 2011 so I have to register as a new patient.  This is a pain. I should have taken better care to have it adjusted and watched. It was not bothering me, and I thought it wasn't working as it was supposed to so I let it go. I was neglectful about the matter. If it is not working, I should have it removed. That is cost prohibitive. The thing was put in in 2008 and has been turned on since. The battery was supposed to be working for only six years. So I expect it to stop any day. My level of usage was low grade, only a very small shock was used to stimulate the brain and create serotonin.  Perhaps the low level of stimulation will enable the battery to last longer.

I am back on effexor. I know that that drug was tolerated by me some time ago. As a matter of fact about three years ago. It seemed to work for a short time and then it quit. Same as the other drugs. I  have had about 18 different medications over the past 21 years. They work for a time then they peter out.

There is a strange phenomenon with depression. Unless the drug is working the right way memory is impaired, joy is also. I have very little memories of the day before. And if you were to ask me how the joy that I experienced was remembered there would be nothing there.  Nothing there, just a vague memory there. Not joy, and over time nothing. I can't remember what joy is about. That is pitiful now isn't it?

Writing is a therapy for depression

I have found that the journaling of my experience with the VNS and depression is in itself therapy. This latest mix of drugs and doing my creative things has given me more serotonin  and other calming brain chemicals. I have been writing some novelettes about an archeologist an her beaux who is in the same business as she. Just to put words to the keyboard and letting things flow keeps my mind off of the anxiety and depression. Replaces the negative with adventure, with other's thoughts, with others problems and then I solve them. Something, the solving part, I have not been able to do very successfully in my own fight with anxiety and depression. It seems that I am developing a type of agoraphobia. just another face of the sickness.

Off Anafranil, On Luvox

I am starting on Luvox. I can't remember if I have taken it in the past 20 years.  This is the result of a conversation I had with someone at work. I was ruminating on the thoughts of the blood coming out of my wrist when I cut it accidentally. Although the cut was accidental in nature, the thought that came into my head was: that this is how a suicide would start. Then my OCD came in and I got stuck on that thought. Scary thoughts. I went in and saw the psychiatrist and she said that the anafranil was not doing the job as well as it should have been doing.
I have all these drugs in the system and the VNS as well. Somehow I don't think that the device in the chest (VNS)  is working for me anymore. However,  I don't want to turn it off and try that way either. 

Pills or Chiropractic Deals

In an effort to help myself in my quest to be free from this depression and anxiety I have studied hypnosis, and meditation and different religions including Buddhism and Wicca.  I have bought supplements of all kinds, in some cases the best that the market has produced at a high price, to boot. I have a VNS implant-which did help at the beginning, and perhaps still does. Diet was improved and I lost a hugh amount of weight, good for my overall health. I have sought alternative medicines and treatments to help. All in an effort to find a way to conquer the anxiety and depression that literally controls my entire life. I am now back on meds after almost two years of being off and I must say that I am doing better now than I was just six months ago. I have yet to tell my chiropractor that I do not want to continue with his adjustments and that I have felt that I have belong to a cult these last two years that I have followed the chiropractic life style.
Yes, much of it is just good, old common sense, and I will keep what makes sense and will not be as heavy as I once was. Although since Jan. I have gained about twenty five pounds. I am dealing with that. Still exercising on a six day schedule-it makes me feel good, so I will do it. But  it must come to a head with the chiropractor, because I feel he brow beats me by telling me that the medication is wrong for me. That I am just killing myself early. Maybe so, but to belittle my decision and do it regularly, I will not have it. I can a least work now and get more accomplished, and be happier as I do it.
I have an employer that knows that I am a depressive and knows that I am trying to live with it to the best of my abilities. I have worked for them almost thirty years now and have had ups and downs with them, but mostly up. And they are concerned with my health as well. So I will stay to the very end ( retirement) if they will have me.
I would like to investigate the treatment of rTMS. Usage of magnetic current through the upper front portion of the brain. It is supposed to help the brain regenerate the dendrites that transmit the neurotransmitters. But I will know more after some reading.
I have just re-read my own blog and found that because I have a VNS device, I can not try rTMS.

Allergies, Drug Interactions, rTMS

In an email from Herb (in black, my response in red):

In my wife's case we were treating coughing, congestion and a prolific amount of phlegm for sometime thinking it was a cold or flu like symptoms.  After numerous testing and chest x-ray my wife was finally diagnosed with what turned out to be Asthma. For me, it was dust, dust mites, grass, pollen, ragweed. For the Asthma she utilizes a nebulizer twice a day containing two drugs; Brovana and Budesonide.  While most drugs list potential side-effects from soup to nuts, I carefully monitor, observe and maintain empirical records on her reactions to all her medications and treatments.  My wife also uses Benedryl for two purposes at bedtime.   One it helps with the congestion and it aids with sleep.I use it to help with sleep as well  So far, no problems with these meds.

I'm not a doctor but through my training as a former Board Member, President and facilitator of a local chapter of DBSA (Herb, I don't(know what DBSA is) I don't give anyone advice but rather share our experiences, my research, knowledge and collaboration with mental health professionals around the world.  I advocate for patient and support person education while encouraging hope and persistence. That is why I  blog.

With that said I really wouldn't have anything to suggest for allergies other than to carefully read all drug literature and while some drugs list the potential for depression and/or other serious side-effects one has to also address the immediate medical problem first. I have a tendency to ruminate on what the negative aspects of  what the drug could do to me, and thus increase the fear factor in the issue. I monitor my body and the reactions it may have, then look the drug up to see if it matches what is going on with me. I would then suggest careful record keeping to see if in fact a particular med negatively effects one's mood state.  As many of us already know each individual is unique and so too one's responses to all treatment options.  Therefore you might utilize a med effectively while the same drug may negatively impact my wife.  I coined a phrase some 5 decades ago as it relates to her therapies, "The Trail and Error Approach to Wellness" as it applies to her mental well being. Bingo!!  

From our experiences I would avoid adding or combining too many drugs at once as one can't determine what drug is doing what or negatively impacting the individual.  One treatment option people often over look is slowly withdrawing from all medications and then starting from square one. This I have done as well, and am in the process of going the way of drugs again, in an attempt to stabilize myself in order to return to work.  Too often treating physicians tend to have tunnel vision and only look at their specialty while the patient ends up heavily medicated and the situation worsens.

I also read that you were talking about rTMS.  I can share with you from my discussions with Dr. John O'Reardon of University of Pennsylvania and Dr. Mark George of the Medical School of South Carolina that rTMS can be performed safely on VNS patients by knowledgeable physicians.  One individual with whom I collaborate was not achieving significant benefit from VNS.  So he went on to try rTMS which did the trick for him.  The problem is no one can guarantee what will or will not work for any given patient.  We simply have to keep trying until we find a treatment or combination of treatments that produce some efficacy.

rTMS Therapy

This past depressive episode and the return to medications has me thinking that I would like to be off the medications once again. The VNS unit, when turned up increases the appetite and I have to eat every hour and can not sleep. If these things can be solved I would turn up the device, but right now I don't know how to get past that aspect of the device. So I am looking elsewhere and I found TMS therapy. Click here

Vindicated!!!!!!!

If you want a great  psychiatrist in the Orlando area, Dr. Lillian Saavedra is the one to go to. She said that allergies are the cause of depression! That when one is undergoing a bad about of allergies to use the anti depressants, then get off of them! That one does not have to be a slave to the drugs! She will be where I will stay in this current about of allergy flare up. Why go anywhere else? She said that the current administration of allergy shots and the VNS should be fine for me. She switched up the medications and the timing of them. We will try this new way of doing things.

Singular in the morning, Xyzal in the noon time, no more antihistamines after about 2pm. She took me off the Abilify and Lexapro, and put me on Cymbalta. Gave me a schedule of how to get off Abilify. We mentioned me going to Steven Spieser for treatment, however Lillian is about only two miles away from me. I had Spieser twenty years ago. He may have changed in all that time, but I like her more than him because she the drugs are not to make you a slave to them, he was different on that tack. But more information has come out in twenty years.

nicktimeflyer.com

cafepress.com/bubbledreams

thesilhouetteshop.yolasite.com

MRI Is Being Discussed

After all these years, Therapist Sheldon is suggesting an MRI. Since the VNS is super sensitive to the magnetic fields that this test would put out, I called Cyberonics who makes the device and discussed, in limited terms what, and how that could be done.  They stated that they needed to talk directly to the MRI tech so that the machine set correctly and the shielding could be done correctly. If it is not, it could ruin the device and hurt me. But I have faith that they have done these types of things before with other implanted electrical devices.

I also asked about the increased metabolism that has almost plagued me since implantation. Early on, it was great, for I had so much of the wrong foods in my system that the device would just stimulate and I would not feel it so much, but as I cleaned the body out, it became more painful, and worked on the metabolism so much the more. It keeps me up at night and keeps me eating constantly. I want to turn the device down, but fear to do so for the depression, which is only reduced, not banished, may return full force.

These are Janet’s other sites:

nicktimeflyer.com

cafepress.com/bubbledreams

thesilhouetteshop.yolasite.com

Turning off the VNS

It has occurred to me that the VNS device maybe hindering the quality of life. I still suffer the symptoms, depression and anxiety are still there, but constant hunger is there, immensely. The VNS device causes that when there are mitigating circumstances, meaning that when there are food allergens and other chemicals that are affecting me, then, yes it works. It always puts out the shock that puts serotonin into the brain. It is how the body receives the  extra serotonin with other factors involved. Other factors

• medications, 
• food,
• psychological preconceptions of fear of what has happened in the past,
• environmental things.

Maybe I need norepinephrine instead. And I have a problem with histamine. I found this link to a Canadian lab. Why American doctors, mainstream are not offering this test is beyond me.

VNS, Xanan, Abilify

The VNS device is at 2 mhz every two hours and the metabolism is crazy. The Abilify,  makes me increadibly hungry, and the VNS just burns it off. Perfect combo. But to get the balance just right is the hard thing.

It could be that the antihistamines (Xyzal, Singular) are what the body really needs and as the depression leaves, which it mostly has, the VNS seems to work overtime at the same setting. I noticed this as the food sensitivities or allergies were clearing out. It maybe that as the allergy shots build the tolerances to pollen, grass, dust and dust mites the VNS, or the Abilify could be cut down. I think the VNS and Abilify both, a little at a time.

Lock Up Blog-CFBH log

11/4/11
I have come to a mental hospital by Seaworld.  Scary at first. Very,very scary. locked in. Every door is under lock and key.
Residents are all sitting in a line of chairs in front of the TV. Some zoned out, other more alert and attentive.
Tough night, and possible wheat or aspartame reactions in the morning from the juice,which was .a crystallite or HONEY NUT OATS  I had for breakfast.
11/5/11
Dr. Hasheez put me Effexor .75. Dr K put me on Xanax .25x3, the singular 10mg, Xyzal by allergist.  I will cancel the allergy shots for now. It-the shots were to start the eight if Nov....I have postponed the Chiropractic for now. The chiropractor was adiment that I not take drugs. That could not not be possible and hold a job. So let that be. I suffered enough. I will maintain about as healthy a life style as I can.
11/5/11
I pray that I have a job to go back to when I get out of here. John says that he would like to help us with our finances, and wants to review how we spend our money. That sounds good right now. Eases the worry.

Poor David, he has seen the down turn in my health,  and now the separation that this lock up causes. Visits are only twice a week for one hour, phone calls are limited to only when others are not using the two phones that are set out when phone access happens three times daily. The access is shared by about 16 women.

The pencils are short golf pencils so people can no use them to stick them into themselves or others. The night I saw a TV show there at the lock up on how someone did that,  well it almost liquidifed my innards.
They won't allow me my watercolor brush, so I wrap a small piece of cloth around the tip of a pencil and use that.  With it my art survives.......it will always help me to survive.
They dose me up on the antihistamines and Ambien to help me sleep. Only thing is these antihistamines don't induce sleep.

I find that when I have a stressful allergic day, as in cleaning, the lymph glands hurt and the VNS does not keep me awake as much.   It is as if the toxins in the body are slowing the effect of the VNS. It does not physically stop it, just slow the affects on the body.  When I am away from the house with all of its dust mites, and then come to the house to sleep, then it has the affect that it gives me too much energy...as if I  drank a lot of caffeine in the late afternoon.  So I am going to try this strategy : cut it down as I can remember during the day, let it decrease it's affects during the day when the body has less to fight and then let it rip at night when I am at home.  The magnet will let me do this. It shuts off the device for that one stimulation and the device will pick up again two hours later. That is how it is set up.

11/6/11
I upped the VNS before I came to this lock up.  Thank God, for it has really helped me in many respects. I am realizing that I must come at this from a different aspect.  They have offered me to visit the therapy program that is attached to this facility. I will do it, if we can do it with out incurring more costs.  It would involve 5 hours of therapy-group therapy.

11/7/11
We work with affirmations here at the PHP side of the lock up. It is a mirror reflection of what is happening to me.. I was locked in my location in the other area in this facility, locked in the depression, hopelessness and anxiety. Here it seems that I am unlocking thoughts that caused some of the depression.


11/8/11
Most of the TV shows that are shown here in the lock up are extremely violent. Amongst the constant bouts of dramas on the phones, residents attacking staff, people in constant hideous emotional states, if one wasn't unstable when they came in,  they are now.  What ever I was going through at home, it was far less than what is going on here. Abilify started at 2.5 mg.

11/9/11
Meds now:Abilify upped to 5mg


11/10/11
Knowing how to stop the automatic negative thoughts that I have programmed into the brain over the years. ANTeaters : thought reprogramming to stop the negativity.

VNS Turned Up to High

11/3/11
In an effort to stem the raising anxiety and depression, I had the VNS turned up to 2.25 mhz. It was way to much. Pulled me out of the depression, however I had to eat constantly around the clock. Every 1.5 hours. And I was in a losing battle. I  kept losing weight and that was not good. Weight at 124 was not good. I went in to the lock up and decided that since it was a hospital, and if I had some kind of reaction, well, I was in the right place. The first day I had foods that I had not had in a long while. Had a interaction with aspartame. It was in some kind of juice product.
But I learned other things. I could eat

• potatoes
• chicken
• tomatoes 
• rice
• promise breakfast spread
• bananas
• unfiltered water (lol)
• pork
• ham

So some foods that I had been avoiding because I wanted to have less starch, less inflammation, less Candida growth, less gas in general, I could eat it, just sparingly.

Allergic Reactions are Decreasing

With the introduction of DMSA to draw out the heavy metals from my system and my gaining the knowledge that of the foods and chemicals that are affecting me, I am feeling less and less depression.
On the days that I have my chiropractic adjustments I need less sleep. I believe this is because more healing is being done just after the adjustment throughout the day, and I need less sleep for the body to recover for the next day. The VNS device is doing its job as well. Until I need less and less sleep each night, which I believe will happen as the body heals from the allergies,  I will keep it as it is. When I feel that I can safely turn it down I will. I do want to eventually turn it down for it hurts greatly as it goes off every two hours.

VNS device and homeopathic

The implant is electrical, runs on batteries. Homeopathic does still work on me. I have been told that homeopathic would not. That information, so far as I can tell is incorrect.

Letter to Mary

 I have steadily gained some muscle over the past couple of months. Muscle weighs more than fat, but by the Tanita machine i am losing fat and gaining muscle. This increases metabolism. Not much, but a good start. I am doing Liquid Chlorophyll in all my water. Really does alkalize me and I am doing better. Spiritually I am better as well. God is leading me in growing faith. He tells me I need to grow in patience and express less anger about things. He will lead me, just have patience. That there will be enough money, enough to do what is right for my health. And I  am to tell people about what is happening to me.
I went to a new doctor today. Neurologist to be on my "medical staff" to adjust the VNS device. He seemed "right". So did his secretary. I was relieved. I thought it might be rough. I had prayed for it to be so, to be "right",  and the Lord answered, why did I even worry? Patience, my child I hear it even now. :) I quietly smile and nod my head.

I wrote Dr. Ahmed Sadek today

Dr. Ahmed Sadek

I received a VNS implant in March 2008 for depression. I had been on medications for sixteen years and found no relief. In the past two years I have come a long way. I have been able through diet and exercise to gain back some use of my brain, rescuing it from the severe depression that I was in. I am now off of all medications, but need to have my VNS device monitored. Dr. Rivera, the psychiatrist that I was seeing, was Orange  City, Florida, 35 miles to the northeast of Orlando, Florida. As I came up out of the depression I have noticed just how inconvenient that trip was and, just how badly he treated his waiting patients. Up to two hour waits. This was on a constant basis. As my life opened up, I have begun to notice this type of thing and with my new non-depressed brain, I have begun to ask and expect a different patient to doctor relationship.
I was told by Cyberonics, who made the implant, that the other nearest psychiatrists are in Tampa and Coral Springs. Even further than Orange City.( But I did not ask about epileptic doctors who deal with this device as well, and one was just two miles from me-editor)
The last time I had the implant adjusted was in November of 2009. Now I need to locate a doctor who will help me monitor it and adjust it if necessary.
If you can’t could help me, could you refer me to one?

Janet Matthews

August 26, 2010

Just to keep track of how I am managing my health care.
Also now I have varicose veins in the left leg. Could chiropractic help this? It helped depression.

Dr. Mark Hyman is the Man!

I started the UltraMind solution on July the 4th, 2009. The first thing I did was eliminate the gluten out of my diet. Energy started to surge into my everyday activities. I made some mistakes, most out of ignorance of just what foods had gluten in them. Then one by one I found that I had allergies to milk, eggs, soy. The energy and focus got greater. At the same time I concentrated on getting my digestive track realigned and success was at hand. I took probiotics to help clear up digestion. Liver support to detox the body. I am today starting to go off of my paxil. We will see. The VNS implant is starting to hurt even in sleep.

Getting ready for a colonoscopy

On 4/22 Rivera gave me a script to start on Ambien. I started about the next day. On the 24th anxiety started up again each day after that the anxiety increased until I stopped it on 29th and then I went back to Rivera on 30th. He changed me to include seroquel, stopping the ambien. This drug was taken at night to help me sleep. First night was Monday the 4th, due to the inability of pharmacy to fill script. They stated the script was on wrong form. Anyways. So the Monday dose was 100 mg. So on Tuesday all day I could barely keep awake. I went to 50mg on Tuesday night still terrible sleepiness all day on Wednesday during the day. Took nothing on Wednesday night. I went back to Ambien on Thursday night anxiety flooded me on Friday. Did not take anything on Friday evening. Saturday morning feeling pretty good. Some anxiety.
Now at the same time the prep for the colonoscopy started on Thursday. Friday Rivera up me to level 2 on the VNS implant. Still at 30 seconds every two hours. No fish oils,Vitamin C or Primrose in AM. Still on Magnesium during day. Stopped magnesium on Thursday night. Started Thoridiazine 50mg on Thursday and on Friday and on Sat. No mag on Friday, Saturday, Sunday. Mag is blood thinner, as is fish oil, vit C and primrose. Friday night I had restless sleep. Saturday In the morning I increased dosage of Paxil to about 20mg. Going off natural stuff to thicken up blood, increasing drugs to stabilize.
I am trying a magnesium product that is powdered and is a magnesium citrate. It absorbs much better than any I have tried before. I read this article 
It seems right up my alley. Even to the loud noises. The ear bones can't dampen the noise when lacking the necessary magnesium so that causes stress to the overall body.