Posted on 03/29/2014 7:44:22 PM PDT by TEARUNNER14
I need prayer for my events that I am having in my life. These events are not a vanity. They could result in a life or death situation.
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For all your information I have been to numerous neurologists, had the MRI's, CATSCANS, EEG's, blood tests, urine tests, electrical heart test and all came back normal.
My wife had this Internal Doctor make an appointment for me to see a specialist at Winchester Hospital and hopefully I will get some resolve and a med for the problem.
And, by the way, I have been given psych drugs and they put me through a serotonin storm and I lost fifty pounds over that and wound up in the hospital for a week.
I am hopeful that God will show me the results of what I need to do!
I believe that I will soon get the help I need from Winchester Hospital in Virginia next week.
What brings on the issue is it migrates in some persons with neurological issues from the stomach where it should be to the brain where it wreaks havoc.
If the sensory processing system is already being overtaxed and producing seizures then it makes no sense to give a person Serotonin Enhancing Meds. Doctors write scripts for antidepressants because it is an accepted by all medication. The medication I take and have taken for over 20 years without any of the problems the media and everyone swore I would develop is Xanax. Benzodiazepine class drugs meaning ones like Valium, Xanax, Librium, Clonoplin etc seem to work best because they actually tone down the sensory processing system to a more functional level.
It doesn't have to be Xanax but rather I mention it because that is what works for me. My wife is a 28 year user. The main thing is for both patient and doctor to understand to use a steady in the bloodstream Low Dosage in our case a half MG 4 times a day. There are some extended Benzo that can make taking one or two pills a day possible. The goal is a minimal but consistent level in the blood stream. Anti car sickness medications also help some patients out.
If you have any history even as a child of chronic ear infectios, ear injury, Chronic Tonsil inflammation, sinus allergies etc this can damage the Vestibular System. Many actually most Vestibular Patients do not ever know they are such as the brain compensates for it. It's when the compensation increases and the brain is also trying to deal with issues like stress this seems to manifest itself in a rather abrupt manner. It's often misdiagnosed as Panic attacks, Anxiety Disorders etc. What is not being addressed is the anxiety is a secondary condition caused by the neurological primary issue such as sensory damage or Inner Ear issues etc.
Not so long ago you heard of persons having Inner Ear Infections and it would nearly drive them nuts. The older General Practitioners the cradle to grave doctors would catch it. Today if a patient went to a doctor with a bad Inner Ear infection where they were crying because noises were too loud many doctors would say Shrink time. This tends to run in families. My cousin had it but not the spasms. My dads sister had it and my dad had a milder case of it.
Before it got real bad I was having issues doing simple task. My brain did not want to engage in a task. I'd have a paper to sign and I could not read it nor for that matter get my body to sign it for say a minute then it was like the signal came through. I was also having issues in things like climbing stairs. One time I could go right up. Next time by the third step I'd be so weak I could not take another step. I'd stand their and literally tell my body to expend more energy.
Look for tell tale signs that point to Vestibular. The Inner Ear coordinates balance. Does your feet hurt? Do you wear shoes out faster then most person by breaking the sides over? Do you have ringing in the ears or do storm fronts cause sharp pain in the ears? A lot of information can be obtained by an extensive medical history work up.
I hope this helps you some. I'm not a doctor but I am a care giver and I put the knowledge I learned when my wife went quad plus what I have read up about afterward and figured out what the doctors couldn't about me. Vestibular research especially in relation to anxiety and even seizures is still rather limited but more and more studies are coming out confirming the connection.
Yes! I been on Xanax, clonoplin and other drugs and they seem to intensify my events. It really is a scary feeling and sometimes I feel like I can't breathe. Xanax does work fair, but I still go through hell with these events and they seem to really have gotten worse and I hate it. I wouldn't wish this on no one except Obama so he can try out his new health care system. Maybe they will screw him on his insurance. lol
Thank GOD for the Internet. I did something two ER's and six doctors treating her neglected to do. I looked up her medications +adverse reactions. I had the answer in a matter of a couple of minutes as to what was happening. I took it too the hospital and the doctors said that's pure rubbish. It was their pharmacology professors article on it. The Xanax she took likely saved her life as it is the class of medication used for antidote to Serotonin Syndrome.
When I first starting having trouble they put me on 2 mg Xanax twice a day which meant it worked about 16 hours a day. A smart doctor a shrink I began seeing after firing several others realized what was happening when I showed him what I thought was happening to me. This was about two years after onset. He stopped the antidepressants and cut the Xanax to a half a MG 4 times a day and I had lots of improvement. My Primary Care doctor writes it for me now. He's an Internal Medicine Specialist.
Just make sure you put your driver’s license away until you get it figured out.
Too much of it or too high a dose can do it. It sounds like they are going to have to pin point where the problem is before they can get the meds right. One thing helping me is I'm also on two antihistamines. you might also have conflicting damage where one damaged or impaired portion is making the impaired other area worse.
Seriously get you a small pocket size recorder and start saying what you were doing a few minutes leading up to your attacks. Is it usually in the same room for example and if so what type of lighting? Find the triggers and you have it half whipped.
That is the funny part of this whole situation is my driving. It seems as long as I am focused on driving these events don't bother me. Only occasionally, and I focus harder and my driving seems ok and even to my wife who has problems, she don't mind my driving. Her driving scares me because she needs eye surgery for her left eye because her other one already had it done. Doctors already advised me and they cleared me unless things get worse. And things are starting to get worse. So, I'm going to have to trust my wife and be scared by her driving.
Prayers that you are successfully diagnosed and treated.
Do the attacks usually happen at home? If so think about any changes even in your neighborhood such a machinery running etc. Have the put up a wind turbine near your home?
“Out of the blue I felt flush. I didn’t know where I was, why I was where I was, how long I had been driving {five minutes at that point} or where the heck we were going. My wife looked at me and yelled what’s wrong with you? I reckon I had some sorta blank look. All I could muster was saying Nothing I’m fine.”
This is exactly what has been happening to me with increasing frequency. Fifteen years ago it was once a year and I would go to the emergency room. Now it is almost hourly with several episodes an hour in the AM.
Prayers for you and all who suffer with neurological uncertainty...and unfortunate certainty as well!
BTW, my PCP for four years up until this week has been telling me that I am just depressed! Finally this week he admitted to my wife that I might have a rare neurological condition and is supportive of me getting further testing.
“It is absolutely phenomenal as to what I am going through. I know that these events that occur with me, once they start, they seem to trigger more events until I completely drained and then have to lay down.”
You might want to consider regularly scheduled preemptive lie-downs during the day, which is what I do.
I started with one lie-down every day at the same time ten years ago and that has gradually increased to four.
You may have developed comorbid ME/CFS and if you push yourself past your stamina tolerance you will get a relapse!
To avoid relapses you must pace yourself, as they have come to call it.
One of the latest theories at to the cause of ME/CFS is chronic inflammation caused by viral infection of the vagus nerve which is undetectable in the blood.
http://chronicfatigue.about.com/b/2013/07/10/vagus-nerve-infection-chronic-fatigue-syndrome.htm
I flunked two tilt-table tests which showed a rare condition of orthostatic hypertension (yes, that is hypertension, not hypotension) before syncope. My BP rises by 30 points as the tilt-table progresses and I believe this triggered a seizure-like episode during the test right before I feinted dead-away (had syncope).
My diagnosis as a result of these test of “neutrally-mediated syncope” is another name for vasovagal syncope, which means your vagus nerve is messed up!
It is possible that my increasing incidence of seizure-like episodes is being triggered by my increasing intolerance of orthostatic stress (stress of sitting or standing).
There are a bunch of windmills for electric behind where I live, but it really don't have that much effect because when I go back to our original home, I still have these effects. My wife and I are staying temporarily in another town because I can't handle a woodburner anymore and we are closer to doctors and hospitals.
The limiting exposure goes against the protocol for treating Anxiety Disorder but in this case you can't desensitize yourself to the triggers because this is a non phobic condition. I shop usually late at night. I wear sunglasses outside in the daytime especially driving. I'm careful about what type of TV shows I watch. I avoid high action or shows even cartoons where there is a lot of strobing effect.
The Inner Ear is the coordinator for more than auditory processing it also coordinates balance and optical senses. A person like myself can have a fear of heights which I do and it grew worse with age. So is a phobia? No not in a true sense. My brain knows my balance is poor and sees high places as a danger. It demands an appropriate response {getting to a safer point} if not the brain triggers a more demanding alert.
As far as sensory bombardment places like Walmart, Lowes, Home Depot, a movie theatre, can set me off. Any [place with sudden loud noises. I also have problems at home in things like family gatherings. In a place where many are talking at once I hear everybody and understand nobody. Same thing eating out in places like Cracker Barrel where I take my hearing aids out. LOL.
I used to also work on my own vehicles. I can no loner lay underneath a vehicle. I get vertigo. I've started using a cane for balance when walking. I had to get orthopedic insoles for my shoes to stop foot pain because a lifetime of walking off balance added to club and Flat feet will others allow me only to walk short distances and I'd wear our any shoes in less than a month.
Like I said some of it I was born with like Club feet and one eye functional vision. I can use both eyes never at the same time though. They discovered my eyes issue when I was 8 and at age 12 I spent two years in Occupational Therapy learning to deal with the eye and coordination issues. It worked good enough that I passed two military entrance physicals. A few years back I started going to the VA for Hearing Aids. The doctor looked at my history shook his head and asked how did you ever pass the entrance physical? I said really I didn't realize it was serious. They checked left eye then right eye no problem. LOL. But it went into what I have now when I was about 36 years old. I was also under some stress. In ten years time I had lost my first wife to a heart attack when she was 23. I met a woman at work and began dating and she went quadriplegic on a date. She's now my wife. My step daughter was involved in a serious wreck where when I got to the scene I thought she was dead. I was later in a wreck with a car rear ending me and I though the persons baby in the front seat was dead. Plus several more things and I had PTSD. The two combined made each other worse and had hit at the same time.
“The Inner Ear is the coordinator for more than auditory processing it also coordinates balance and optical senses.”
I can’t believe how hard it has been to convince my docs to order a VNG study to screen for balance disorders! As I said, I hope that ends this week.
My heart goes out to you for your life-long challenges. I had 50 years of high functioning before “creeping decrepitude” set in (now morphing into galloping decrepitude, as my sister exclaimed the other day).
My first neurologist looked at my history of having a serious unidentified viral infection in 1952 at the height of the polio epidemics and reviewed the significant research done by Dr. Bruno in the late 1990’s showing that a lot of polio and polio-like viral damage of that era never resulted in paralysis but DID result in extensive loss of neurons in the brain. This is a type of post-polio/post enterovirus syndrome.
He said that I may have had a significant percentage of my total neurons wiped out so that I would run out of excess neurons that a person normally relies on to have high function as 5% of remaining neurons are lost each year after age 25, IIRC.
I live in a three-level retirement community (independent, assisted and nursing) and the 90-year-olds blow by me on the walkway these days.
But I am still ambulatory and thank God for each day that I am.
I took Prozac and Celexia and that is what gave me my serotonin storm. It was pure hell for those two weeks and it also made me to pass out and also to conjure up some fantastic hallucinations that were pretty bizzare'
I thank everyone of you for your prayers and input. I know now that God has revealed to my wife and I exactly what I am going through. I told my wife I know now that the two neurologist were on the wrong track and the internal medicine doctor was right, but wrong meds. Hopefully, the appointment next week will produce better results for me.
Before we met she was under a lot of stress and let herself get run down opening the door for it.
I take it with humor. My dad used to tell me that I did real good for an 80 year old man or whatever age he was when he would say it.
Given the choices of what I thought it was like a stroke. MS, MD, Brain tumor, or similar I consider myself lucky this is what I have. It left me with most of my physical strength which allows me to lift my wife and get her up etc. My sister 5 years my senior is 61. She's in a nursing home with Dementia and has had several strokes to boot.
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