feelfit
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Member # 12770
posted
My LLMD at last appt mentioned that I have dysautonomia. I did not really know what it was other than tachycardia and perhaps feeling light headed when he asked me to take dep breaths.
Well, I have ben researching dysautonomia over the weekend and am astounded!
It literally accounts for all of my remaining symptoms. My joint problems went away after my first round of IV Rocephin.
What i have left is postural tachycardia, swallowing incidents, headaches and migraines, lightheadedness. Inability to shop or be in stimulating environments, eye problems.Fatigue after tachycardia.
These are all autonomic nervous system disorders. Often they appear after a sickness or virus.
There are several medical centers dedicated soley to this disorder.
Mine presents the way that I described but there are other presentations as well. OH and anxiety is part of it too...
Dr. Blair Grubb is one of the leading doctors treating and researching this condition. A lot of interesting info at Vanderbilt University as well.
I always wondered why paxil could dumb down these symptoms in the past....maybe I have found my missing link.
Sadly, it is a 6-9 month wait to see Dr.Grubb. But if I could get some of these sx controled I think that I would be feeling pretty good.
Ticksuck, you and NMN may want to look into this as well.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Yes, I am convinced that I am dealing with dysautonomia too - I know we share many similar symptoms. I think my crazy heart beat is due to dysfunction with my nervous system. My blood pressure is also all over the map, high/low, along with so many other symptoms, like you have.
I guess my hope has been if I could get all of the infections under control, this would also resolve? So if the abx doesn't help this...do you know how it is treated? Thanks for info feelfit. How is the IV going? How long have you been on it now? TS
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feelfit
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I'm doing good on the IV as far as toleration goes...it hasn't touched the nervous system dysfunction, before or now.
There are various treatments. Tests need to be done at their labs becuase they are finding that there is a severe mix up in dopamine and norephinephrine....which accounts for the crazy HR, BP, wired feeling. They are dysregulated.
There are meds that they are using but they are tailored as to individual dsyregulation.
Dopa and Norephinephrine along with blood pressure and heart rates are measured while sitting, standing and lying down.
Sometimes beta blockers and compression stockings are used but that seems to be older tx. The newer tx seems to regulate the dopa with target drugs.
The good news is that once the autonomic nervous system is operating properly, meds are stopped an no relapse. Sometimes as short as three months.
Sometimes it doesn't work either, but they say it is rare.
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seekhelp
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Feelfit, can you PM me the info on this Dr. Grubb. I too am curious as I have many symptoms like this: eye issues, balance issues, severe weakness now when going from lying to standing, head pressure, nausea, balance issues. I've been wondering if these are related to this condition. I know it's all coming from my nervous system. I can't even work on spreadsheets on the computer anymore due to it.
I do not have the elevated heart rate issue though. BUT, my systolic BP is the only piece that goes sky high....180+ / 80. My diastolic number never changes. The systolic is adrenaline and I believe ANS=-related, right?
GiGi's comments make more sense now. Maybe she does know a thing or two or a hundred. lol.
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posted
Thats interesting stuff. I just spent the last few days in a herx from hell on levaquin so I defo have living bugs involved. I believe in the bodies ability to heal when all the active infections are removed.
When all signs are gone of infection and I still have residual stuff left I will look into it too.
My heart is fine and always has been. blood pressure is normal always too.
Thanks. Keep me posted on your experience with this.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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feelfit
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Member # 12770
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Yes Seek I'll get you the info. It dosen't have to be a racing heart, can be just mis-firing of the nervous system....as you descibed.
Have you tried doing your HR abd blood pressure while lying, standing and sitting?
I have an appt at 2:30 but will get back to you later.
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seekhelp
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posted
Actually, I got it. I just spoke to the office. I didn't realize it was only in Toledo, OH!! Awesome. PM me as I have some more info. It looks like they accept insurance as well.
I may try to get looked at there as I've been trying to find a specialist in this area to shed insight.
I've never done the heart rate and BP lying. Sometimes standing, but 99% of the time sitting. Dr. L used to do that standing BP, but i don't think his approach was sound from what I read.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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The more I research my sensory symptoms the more I think they are all a product of my chronic active Uveitis and cataract.
If I did not have an opthamologist that does not give a rats *** about chronic low level inflammation I would be in a lot better shape. I am putting an end to this this summer when I fly to Dr Foster at Harvard. I will also get a neuro opthamology work up.
I think mine is a direct result of anterior inflammation and too much light entering the eye and over whelming my brain causing nausea and horrible irritability that makes going outside a very unappetizing experience.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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feelfit
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posted
Aw NMN,
I thought that you had tachycardia too for some reason???? Well good luck with the Harvard Dr. and I hope that you find your answer.
Guys, I don't doubt that we are all infected and the bugs have caused all of this...no doubt.
But, I am thinking that those bugs messed up my nervous system big time and itf there is something that can get me back on track, I am going to explore that as well.
Best to all, Feelfit
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feelfit
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I will also still treat the bugs, but if something gives symptom relief, which nothing has of yet, I'm on board.
You are absolutely right. I, like you will tackle the Uveitis almost as a separate entity. Obviously avoiding systemic steroids all the way. Go for it
Neil
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I recently had a tilt table test which was positive. I'm waiting to see a cardiologist now to see what to do from here. I'm hoping that they can treat at least some of my symptoms.
Seems like dysautonomia is common in Lymies.
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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posted
I have been dealing with this since 2003 . information of interest such as low Aldosterone and Renin (Kidney & Adrenal). Abnormal Brain Stem response. I'm not feeling well right now but will expand on this when I feel a little better. Al PM me if I forget !
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I'm with you all the way. Maybe getting the dysautonomia checked out and some sort tx will provide some relief of the symptoms. At this point, whatever works, right?
I try to remain hopeful that killing the bugs will alleviate some of those symptoms; but, after 13 months of tx my hopefulness is seriously waning. I think you're even a little longer into tx if I remember right. Please keep us posted! TS
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feelfit
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you bet!
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posted
. The Brain stem response or BSER is a very simple test done by an ENT. dr. They measure the time it tales for sound to get from your ear to your brain. An abnormal test means you have a problem with your ear or Brain stem.
So far they haven't found which or what is the cause. It's a start and needs to be determined. I did have an abnormal brain stem response in both ears.
Another area is the Kidney/Adrenal as I have low Aldosterone and Renin along with low citrate, low sodium and low Vit. D I went to an Endocrinologist and he said ,"Your tests are doing just the opposite of what I expected so I don't know what is going on but if you find the answer would you give me a call." I admired him for saying that.
One other area is called the "Nutcracker phenomena" This is the left renal vein becomes compressed by the aorta , this can cause the disautonomias we have. Symptoms of this are left flank pain and high blood pressure. ---- There is a problem with the neck vein that dr Jemsek just discovered, ( not proven yet but it makes alot of sense) attached below.
Dr.J. OF S.C. 'The sore throat that is not a sore throat' - What is Carotidynia? Frequently our patients describe sore throats as part of their recurring symptom complex. Often, when specifically asked, the patients note that ear pain accompanies the throat pain, but the patients often state that their primary physician can find no reason for their discomfort. In fact, on examination, there is no sign of inflammation of the throat or ear.
The condition 'carotidynia' is little known but is, in fact, common. On careful examination, one can easily detect swelling and pain at the carotid bulb, which is located just lateral to the top of the thyroid cartilage (Adam's Apple) and is the location at which the internal and external carotid arteries separate, or bifurcate.
Our theory is that this is yet another sign of inflammatory neurological disease associated with LBC, since the carotid bulb is known to be a baroreceptor, which means it plays a prominent role in monitoring blood pressure. As such, it is loaded with nerve fibers, some of which mediate pain. Since the fibers at the bulb lie in proximity to the throat and may radiate to the ear area, our patients complain of 'sore throat and earache', when in fact the throat and ear pain arise from an inflamed carotid bulb. The mediation of this pain is most likely from the Nerve of Hering, a branch of the 9th cranial nerve (glossopharyngeal nerve), and/or a branch of the superior cervical sympathetic chain.
The lyme doctors find a connection with the Hypothalamus, Pituitary,Adreanl axis; again not proven.
I took note of your mention of DOPA as treatment. There is a drug in Trials now called Droxy Dopa being tested for Primary Autonomic Failure . I talked to the research dept and she said it may be used for other disautonomias but that trial is not yet planed.
Infection is most likely the root cause but symptom relief may make it possible to live a more functional life. Below is information on Droxy Dopa, -----
Systolic blood pressure is transiently and minimally decreased in healthy individuals upon standing. Normal physiologic feedback mechanisms work through neurally-mediated pathways to maintain the standing blood pressure, and thus maintain adequate cerebral perfusion. The compensatory mechanisms that regulate blood pressure upon standing are dysfunctional in subjects with orthostatic hypotension (OH), a condition that may lead to inadequate cerebral perfusion with accompanying symptoms of syncope, dizziness or lightheadedness, unsteadiness and blurred or impaired vision, among other symptoms.
The autonomic nervous system has a central role in the regulation of blood pressure. Primary Autonomic Failure is manifested in a variety of syndromes.
Orthostatic hypotension is a usual presenting symptom. Primary Autonomic Failure may be the primary diagnosis, and classifications include pure autonomic failure (PAF), also called idiopathic orthostatic hypotension (Bradbury-Eggleston syndrome) autonomic failure with multiple system atrophy (Shy-Drager syndrome) and also Parkinson's disease. Regardless of the primary condition, autonomic dysfunction underlies orthostatic hypotension. Orthostatic hypotension may be a severely disabling condition which can seriously interfere with the quality of life of afflicted subjects. Currently available therapeutic options provide some symptomatic relief in a subset of subjects, but are relatively ineffective and are often accompanied by severe side effects that limit their usefulness. Support garments (tight-fitting leotard) may prove useful in some subjects, but is difficult to don without family or nursing assistance, especially for older subjects. Midodrine, fludrocortisone, methylphenidate, ephedrine, indomethacin and dihydroergotamine are among some of the pharmacological interventions that have been used to treat orthostatic hypotension, although only midodrine is specifically approved for this indication. The limitations of these currently available therapeutic options, and the incapacitating nature and often progressive downhill course of disease, point to the need for an improved therapeutic alternative.
The current withdrawal design study will measure the efficacy of droxidopa on symptoms of neurogenic orthostatic hypotension in patients randomized to continued droxidopa treatment versus placebo, following 14 days of double-blind treatment.
droxidopa
droxidopa [also, known as L-threo-3,4-dihydroxyphenylserine, L-threo-DOPS, or L-DOPS] is the International non-proprietary name (INN) for a synthetic amino acid precursor of norepinephrine (NE), which was originally developed by Sumitomo Pharmaceuticals Co., Limited, Japan. It has been approved for use in Japan since 1989. Droxidopa has been shown to improve symptoms of orthostatic hypotension that result from a variety of conditions including Shy Drager syndrome (Multiple System Atrophy), Pure Autonomic Failure, and Parkinson's disease. There are four stereoisomers of DOPS; however, only the L-threo-enantiomer (droxidopa) is biologically active.
The exact mechanism of action of droxidopa in the treatment of symptomatic NOH has not been precisely defined; however, its NE replenishing properties with concomitant recovery of decreased noradrenergic activity are considered to be of major importance.
Droxidopa has been marketed in Japan since 1989. Data from clinical studies and post-marketing surveillance programs conducted in Japan show that the most commonly reported adverse drug reactions with droxidopa are increased blood pressure, nausea, and headache. In clinical studies, the prevalence and severity of droxidopa adverse effects appear to be similar to those reported by the placebo control arm.
[ 04-22-2009, 05:28 PM: Message edited by: Al ]
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