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Denstar51

Dysautonomia (autonomic dysregulation) - POTS, syncope, etc.

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Denstar51

Can anyone give any info on dysautonomia?

 

Seems my symptoms are bad enough to warrant this, and I'm into 32 months now

 

Denstar51

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Neuroplastic

Hey, Denstar. I moved your topic to the Symptoms - this way you will get more traffic. :) I'm sure people will soon chime in with the info.

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squirrel

I wonder about this too as my symptoms fit

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stan

Posted Image

Normally there is a stabilite in these two systems example :

heartbeat not too accelerate and not too slow ; as antidepressants fire receptors of nerves, it is going too slow or too fast heartbeat

i have as all people dysautonomia : many systems, organs do not function correctly

Edited by manymoretodays
working on replacement chart, photobucket image gone now :-(

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squirrel

And is it permanent? Can anything be done about it?

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Healing

Sur knows a ton about dysautonomia. She was the one who introduced the idea to me that this is probably part of what's going on in SSRI w/d.

 

Until she gets here, I'll just say dysautonomia, or dysregulation of the autonomic nervous system, can be caused by many things. And we are still in the early stages of understanding why it starts and why it stops. It seems like it can come to a stop at any time, and we can't really predict when that will happen.

 

However, it's likely that all the healthy lifestyle things and all the stress reduction things probably make it *more* likely that the nervous system will re-regulate itself. That's the usual suspects -- good nutrition, exercise (depending on where you are in recovery), relaxation practices, meditation, cutting down on stressful situations, etc.

 

 

Stan -- thank you so much for the helpful graphic!

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stan

And is it permanent? Can anything be done about it?

 

what i understand actually : the poison fires an amount of nerves receptors , so nerves bath constantly in serotonin while body make homeostasis (kind of balance, he tries to live with the poison)

when we stop the poison or are in tolerance, the body is overhelmed by the toxic effects, he can no more make homeostasis, it is chaos because of lack of receptors

dysautonomia and many other functions are messed (physical and psychological)

is this state permanent ?

no , because we see people are able to function again, but we also see it takes not months, but years

can it reverse totally ? i think there is no reverse, brain needs to create new receptors and this takes years

every day brain makes update to recover

 

i wait your answers to Healing's questions ,

what can be done about ? time, no stress, well eating, supplements,exercising... but the biggest is time

i have not much testimonies after 7 years off to make rules of recovering

a serious damage can improve 90 % with years and be liveable

my first goal is 80/90 %

 

have you checked thyroid ? what meds are you taking actually ? (betaserc...)have you all these symptoms constantly ?

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squirrel

hi Stan, last time my thyroid was checked it was ok. I am not on any medication. my symptoms can change by the hour.

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Altostrata

Selections from an article on about.com (emphasis mine). This doctor gives a good overview of symptoms but does not mention insomnia and hypersensitivity to sympathomimetic and parasympathomimetic drugs, which are also dysautonomic conditions:

 

http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm

 

Dysautonomia

From Richard N. Fogoros, M.D.,

A family of misunderstood disorders

In the 19th and early 20th centuries there used to be a condition called neurasthenia. People would find themselves suddenly unable to function, due to a host of inexplicable symptoms, often including fatigue, weakness, strange pains, dizziness and passing out. Doctors would not find anything to explain these symptoms, so they were attributed to a "weak nervous system," or neurasthenia. Women with neurasthenia (for men were not given this diagnosis, by and large) were often confined to their beds, where they would either recover or, eventually, die. And while nobody knew what caused this condition, everyone - doctors and laymen alike - took it seriously.

 

Most modern doctors hearing about this mysterious condition merely shake their heads in wonder. Few seem to consider the possibility that "neurasthenia" is still with us....

 

Yesterday's neurasthenia, today's dysautonomia

People who a century ago would have been called "neurasthenics" today are given a host of diagnoses. These include chronic fatigue syndrome (CFS,) vasovagal or neurocardiogenic syncope, panic attacks, anxiety, inappropriate sinus tachycardia (IST,) irritable bowel syndrome (IBS,) postural orthostatic tachycardia syndrome (POTS,) or fibromyalgia. Sufferers of all these conditions tend to experience an imbalance, and most often a peculiar volatility, in the autonomic nervous system - an imbalance that we now call dysautonomia.

 

The autonomic nervous system controls the “unconscious” bodily functions, such as heart rate, digestion, and breathing patterns. The autonomic nervous system consists of two parts: the sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are necessary when an individual is in danger or under stress. The parasympathetic system controls the “quiet” body functions, for instance, the digestive system. In short, the sympathetic system gets the body ready for action, while the parasympathetic system gets the body ready for rest. And in normal individuals, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs.

 

In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent, vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, anxiety and (quite understandably), depression.

 

Sufferers of dysautonomia can experience all these symptoms or just a few of them. They can experience one cluster of symptoms at one time, and another set of symptoms at other times. The symptoms are often fleeting and unpredictable, but on the other hand they can be triggered by specific situations or actions. (Some people have symptoms with exertion, for instance, or when standing up, or after ingesting certain foods.) And since people with dysautonomia are usually normal in every other way, when the doctor does a physical exam he or she often finds no abnormalities.

....

 

What becomes of people with dysautonomia?

Fortunately, the prognosis appears far better than it was in the days when the disorder was called neurasthenia. ...Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives. Sometimes, in fact, the probability that things will ultimately improve on their own may be the only thing that keeps some of these individuals going.

 

But even though the symptoms eventually improve in most cases, many people with dysautonomia experience symptoms that completely disrupt their lives, and the search for competent medical assistance in rendering their symptoms tolerable is too often a difficult one.

 

The problem of evaluating dysautonomia

The severity of the symptoms in people with dysautonomia are typically far out of proportion to any objective physical or laboratory findings (especially when the doctors don't know which findings to look for.) This lack of objective findings makes life very difficult. In modern medical practice, grounded as it is in the gathering and interpretation of objective data, when patients have the audacity to complain of symptoms without providing the objective medical findings to back them up, they are often written off as being hysterical.

 

Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist. The type of specialist they are sent to usually depends on the predominant symptom they are experiencing, or on the symptom that most impresses the family doctor.

 

And the diagnosis they are ultimately given depends on their predominant symptoms and which specialist they end up seeing. Thus: Those whose main complaint is easy fatigability are likely to be diagnosed with CFS. Those who pass out are labelled as vasovagal or neurocardiogenic syncope. Those whose resting pulses are noticeably high are said to have IST. If dizziness on standing up is the chief problem, POTS is the diagnosis. Diarrhea or abdominal pain buys you irritable bowel syndrome. Pain elsewhere ends up being fibromyalgia. Whatever the diagnosis, however, a dysfunctional autonomic nervous system almost always plays a major part in causing the symptoms.

 

And whatever the symptoms and whatever the diagnosis, all these syndromes are real, honest-to-goodness physiologic (as opposed to psychologic) disorders – probably variants of the same general disorder of the autonomic nervous system – and while they can make anybody crazy, they are not caused by craziness.

 

What causes dysautonomia?

Dysautonomia (and all of the above syndromes) are caused by many different things, and do not have one, single, universal cause. It seems clear that some patients inherit the propensity to develop the dysautonomia syndromes, since variations of dysautonomia often run in families. Viral illnesses can trigger a dysautonomia syndrome. So can exposure to chemicals. (Gulf War Syndrome is, in effect, dysautonomia – low blood pressure, tachycardia, fatigue and other symptoms – that, government denials aside, appears to have been triggered by exposure to toxins.)

 

Dysautonomia can result after various types of trauma, especially trauma to the head and chest. (It has been reported to occur after breast implant surgery.) Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset. Chronic fatigue syndrome, for instance, most classically begins following a typical viral-like illness (sore throat, fever, muscle aches, etc.,) but any of the dysautonomia syndromes can have a similar onset.

....

 

How is dysautonomia treated?

Unfortunately, just as there is no generally accepted nomenclature for the dysautonomia syndromes, just as there is no generally accepted set of criteria for diagnosing many forms of dysautonomia, just as there is no general agreement on their causes or on the precise mechanism that produces the autonomic imbalance, so there is no generally accepted approach to treatment. Possibly the most important step in treatment is to find a physician who understands the nature of the problem, is sympathetic toward it (i.e., does not consider you merely a crazy person,) and who is willing to take the prolonged trial-and-error approach that is often necessary in reducing symptoms to a tolerable level.

 

In any case, since the underlying cause of dysautonomia is not known, treatment is largely aimed at controlling symptoms, and not at "curing" the problem.

 

Non-drug therapies

Physical activity: While most doctors don't realize it, the experiment as to whether restricting physical activity helps dysautonomia was done 100 years ago.

 

The experiment failed. Big time. Thus: maintaining a daily level of physical activity is probably the most important thing people with dysautonomia can do. Some daily level of moderate activity helps to stabilize the autonomic nervous system, and in the long run makes "relapses" of symptoms more rare and of shorter duration. Physical activity may even hasten the day when symptoms go away on their own.

 

Physical therapy and similar "alternative" treatments such as yoga, tai-chi, massage therapy, and stretching therapy have been reported to help as well.

 

Dietary supplements: Any time a medical condition exists that doctors treat poorly, purveyors of dietary supplements have an open field for pushing their products. Not only do patients feel they may have no better alternative, but also the medical profession, embarrassed by its failure to treat effectively, has little grounds for complaint. Consequently, thousands of unsubstantiated claims have been made about the ability of various vitamins, coenzymes and herbal preparations (all the usual suspects - you know the ones) to relieve the symptoms of dysautonomia. As a member of the embarrassed medical establishment, DrRich can only say - it's your money; try not to spend it on anything that will hurt you.

 

Drug therapies

A host of pharmaceutical agents have been tried in patients with dysautonomia. Those most commonly felt to be useful include:

 

Tricyclic antidepressants - such as amitriptyline (Elavil,) desipramine (Norpramin,) and nortriptyline (Pamelor) - have been used, in low dosage, to treat several of the dysautonomia syndromes. Selective serotonin reuptake inhibitors (SSRIs) - such as fluoxitine (Prozac) sertraline (Zoloft,) and paroxetine (Paxil) - have also been used to treat these syndromes. When effective, the tricyclics and the SSRIs appear to do more than merely control any depression that might accompany the dysautonomias. There is some evidence that they might help to "re-balance" the autonomic nervous systems in some patients.

 

Anti-anxiety drugs - such as alprazolam (Xanax) and lorazepam (Ativan) help to control symptoms of anxiety, especially in patients with panic disorder.

 

Anti-low blood pressure drugs - Fludrocortisone (Florinef) helps prevent the symptoms caused when the blood pressure drops when the patient is upright (a condition called orthostatic hypotension.) Orthostatic hypotension is prominent in vasovagal syncope and in POTS.

 

Non-steroidal antiinflammatory drugs - Ibuprofen (Motrin, Advil,) and naproxen (Naprosen, Aleve) can help control the pains associated with the dysautonomias, especially fibromyalgia.

 

It is worth mentioning again that there is no tried and true treatment method that always works in treating patients with dysautonomia. A trial and error approach, requiring the patience of both doctor and patient, is almost always necessary. In the meantime, victims of dysautonomia can try to reassure themselves by remembering two facts. First, dysautonomia usually improves as time goes by. Second, the academic medical community (and the pharmaceutical companies ) have now accepted the dysautonomia syndromes as real, physiological medical conditions. Consequently, a tremendous amount of research is going on to define the precise causes and mechanisms of these conditions, and to devise treatments that are effective more often and to a greater extent than many of the treatments being used today.

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stan

good article

 

but today i think (hope i am right):

i see two kinds of dysautonomia: one which comes naturally (not from meds or someone who continue to take them) and with who it will be difficult to manage symptoms ; apparently cannot be cured

and another kind which results from nerves receptors fired (who can re-grow) , and this one can recover much , we call it withdrawal prolonged syndrome

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Altostrata

...

i see two kinds of dysautonomia: one which comes naturally (not from meds or someone who continue to take them) and with who it will be difficult to manage symptoms ; apparently cannot be cured

and another kind which results from nerves receptors fired (who can re-grow) , and this one can recover much , we call it withdrawal prolonged syndrome

 

As I understand it, there are three kinds:

 

- Familial or inherited dysautonomia: Genetic and the most severe; onset is early in life and continuous. In neurology journals, this is what is most often discussed as dysautonomia. The list of potential dysautonomia symptoms is derived from research on familial dysautonomia.

 

The poor outcomes from this condition do not apply to us. Don't read those articles if they scare you.

 

- Acquired dysautonomia: As the article describes, people may develop autonomic symptoms after infections or exposure to toxins, and these are diagnosed as chronic fatigue syndrome, fibromyalgia, etc. Recovery is slow and can take years.

 

Some otherwise healthy people spontaneously develop autonomic symptoms from unknown causes, which also clear up spontaneously, although not necessarily quickly.

 

- Iatrogenic dysautonomia: This might fall into the "toxins" category, except that it is after exposure to medical treatment, such as psychiatric medications or sedatives. (Healing posted an article about this in Media http://survivingantidepressants.org/index.php?/topic/58-icu-sedation-can-cause-cognitive-impairment/)

 

This is our category: A previously stable nervous system is assaulted by a pharmaceutical. We know it is not progressive and corrects gradually. It is an advantage that we started with stable autonomic patterns to which our nervous systems can return -- the underlying pattern is still there, engrained in the neurons.

 

(I also believe that, rarely, the stress of withdrawal can touch off incipient autoimmune conditions or other true diseases, but that affects a minority of people suffering from withdrawal syndrome.)

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stan

- Acquired dysautonomia: As the article describes, people may develop autonomic symptoms after infections or exposure to toxins, and these are diagnosed as chronic fatigue syndrome, fibromyalgia, etc. Recovery is slow and can take years.

 

Some otherwise healthy people spontaneously develop autonomic symptoms from unknown causes, which also clear up spontaneously, although not necessarily quickly.

 

these people have often "only" fibromyalgia or else, they can function 80 % ...

 

- Iatrogenic dysautonomia: This might fall into the "toxins" category, except that it is after exposure to medical treatment, such as psychiatric medications or sedatives. (Healing posted an article about this in Media http://survivingantidepressants.org/index.php?/topic/58-icu-sedation-can-cause-cognitive-impairment/)

 

This is our category: A previously stable nervous system is assaulted by a pharmaceutical. We know it is not progressive and corrects gradually. It is an advantage that we started with stable autonomic patterns to which our nervous systems can return -- the underlying pattern is still there, engrained in the neurons.

 

(I also believe that, rarely, the stress of withdrawal can touch off incipient autoimmune conditions or other true diseases, but that affects a minority of people suffering from withdrawal syndrome.)

 

these people have often all systems messed in the first months, they cannot function 80 %, but after a while they recover many functions

 

you have explained it better as i with my bad english, cognition and memory messed...

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Altostrata

You do okay, stan!

 

Some people with fibromyalgia or chronic fatigue syndrome are very sick, others cope with their symptoms and lead normal lives. Sleep disturbances are common in both conditions.

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stan

You do okay, stan!

 

Some people with fibromyalgia or chronic fatigue syndrome are very sick, others cope with their symptoms and lead normal lives. Sleep disturbances are common in both conditions.

 

you are right, i never had these illness, i experience only pseudo fibro and CFS, it is not the same;

Sleep disturbances, i know , with my nocturia, i ask myself how can i sleep !

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Altostrata

I definitely had pseudo-fibro for about a year and a half, tingling pain in my hands, wrists, arms, and right shoulder. Acupuncture eventually did the trick, just like that, it went away after a session.

 

I still have to be careful not to do too much mousing with that right arm.

 

Fatigue, also, but not chronic fatigue syndrome. Usually CFS sufferers also have a lot of illnesses, respiratory and otherwise, and my general health has been amazingly good throughout withdrawal syndrome, with maybe colds or flu only a few times in 6-plus years.

 

I read somewhere that increased cortisol mobilizes the immune system, maybe I can find that again.

 

Denstar, how are you doing?

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Maybe

Hello all,

 

I just experienced a weird new symptom. I bowed my torso to lift some bottles, came up and some seconds later my head became warm up from my neck and I got dizzy. It felt totally weird and had nothing to do with my blood pressure (tested it right after). Now my head feels dizzy somehow and I have a slight headache. What the hell was that?

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Maybe

I know that probably no one has had the same symptom. So a question arises: Do some of you also have such weird symptoms that come and go without poping up again?

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angie007

Hi MAYBE,

 

Oh yes buddy, ive had this too plus an array of weird strange sensations, sometimes its just the one time, sometimes it can happen

a couple of times, then it goes away, how odd and unnerving, guess there is just nothing predictable about any of this at all.

 

For me ive also had the fluttering in the chest, burning skin, pain in the soles of my feet, burning in the soles of my feet, all of which

disappeared, and annoying as these are, we have had to endure so much worse my friend, be assured you are so not alone, im sure others will

chime in soon to reassure you too.

 

healing hugs to you my friend.

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Georgia

I had a similar thing happen at 2 years off lexapro. I bent over to pick something up off the floor, and had vertigo. It was really a terrible feeling, but that was over a year ago and it has never happened again.

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Maybe

Thank you very much you two :)

 

It is always reassuring when others have experienced similar symptoms. I am not afraid of "long term" symptoms, symptoms that slowly occur and last for a longer time. But those sudden things still have a much greater impact...

 

@Georgia:

Did you also have wd/adverse reaction from Lexapro? How are you now?

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Gem

Hi Maybe

 

Yes, I had two separate incidences of something similar to vertigo, where everything was spinning. This was in earlier withdrawal, I haven't had it again since.

 

In very early withdrawal, I once woke with a start and had a really weird sensation that I can only describe as a light suddenly flashing on in my brain, and at the same time I had an intrusive thought. This only happened once.

 

I know what you mean about sudden symptoms having a strong impact, it's quite scarey.

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Punarbhava

I know that probably no one has had the same symptom. So a question arises: Do some of you also have such weird symptoms that come and go without poping up again?

 

 

 

Hey Maybe.......

 

you can count me in on both of your lists. In regard to your original post, I pretty much had that symptom chronically. Not fun at all and thus, I had to avoid bending from the waist down. Had it early in the day, every day and as the day progressed it would ease up to a more manageable level.

 

 

To answer your second question: Although I had many vestibular problems throughout WD I did have one day where a particular symptom was very different, bizarre and very frightening.

 

 

It lasted most of the day. I could not walk forward. My brain would only allow me to walk side-ways (to the right) ..........like a great force pulling my body to the right. Consequently, my feet could only move sideways and thus, I could not walk normally but rather, had to cross one foot over the other and so on to keep moving side-ways.

 

I couldn't function that day at all and I kept telling myself to hold on for one more hour (that it would pass) but the more hours I remained in this state the more afraid I became since, I live alone and I didn't have anyone to assist me and/or make me something to eat. Consequently, I didn't eat until the evening since, I was bedridden with severe vertigo as well.

 

It was so scary and I wanted to call someone but I kept hoping it would pass. It eventually lifted in the early evening (thank God) and this particularly intense symptom has never returned. BTW, this popped up at about the 23 month mark I believe or some time around then. One would think that such a symptom would have exhibited, in full force, early in WD.

 

I also had the flashing white light scenario (like shooting stars popping up in mid air .........flashing all over the place but, if I remember correctly, it was just within the vision range of my left eye and only above and not below this range. I posted about in your thread some time ago since, I believe you experienced something similar? Forgive me if my recall is inaccurate.

 

Anyway, it sounds like a relatively benign symptom but it was really disturbing and quite intense and would not let up for several hours straight. This symptom was also a one time event, never to return again. BTW, it did present itself a few months before I reached the 2 year mark.

 

 

The joys of WD never cease to amaze me.

 

BTW, I believe you're at the 2 year mark or close to it? If so, CONGRATULATIONS for holding out this long Maybe. Many rewards will soon manifest in a significant way.

 

 

Continued Healing and Full Recovery to You! (in the very near future)

 

 

Punar

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Altostrata

I've also had this symptom. It's very common.

 

It's an autonomic dysfunction in regulating blood pressure (orthostasis). When you change position, your blood pressure also changes. When you have an autonomic dysfunction in this area, blood is not sent fast enough to your head.

 

You can also get this when you get up from lying down. In that case, it's called Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome)

 

Gentle exercise is one treatment. Acupuncture may help.

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Maybe

@Gem:

Thanks for sharing!

I am glad that I had no vertigo. Never had that in wd. My dizziness is always different and hard to explain.

And yes, I hate those surprising symptoms...

 

@Punar:

2 years on Monday, thanks, but please congratulate me, when I am through wd <g>. Time goes by by itself, no real accomplishment on my part :)

That must have been a terrible experience when you could not walk sideways. I just cannot comprehend what those drugs do to our brains and bodies. This is so unbelievable...

And yes, I had something similar regarding the flashing lights. It can happen when I go to sleep and close my eyes. But they are not very intense. Still quite unnerving as everything else in wd.

How are you doing right now?

 

@Alto:

It was the first time I experienced that and it did not feel like the "normal symptom" when you get up too fast. It felt strange and different and my brain was kinda dizzy (no vertigo!) afterwards for quite some time.

 

Why do those symptoms pop up 2 years after I have taken the pills? Is it possible that there is still something damaging parts of my brain/body? I just don't get it...

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Altostrata

Maybe, did you have it just that once? Your nervous system is still healing.

 

You know you've gotten odd symptoms here and there, this was one of them.

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Maybe

Yes, first and only time till now. Though I did not bend down again. Didn't want to repeat that :)

I know I have had many weird symptoms. It is just that when such a weird thing happens I get the thought "Wow, now something is broke".

 

I just wonder...the pills disturb the whole system and maybe this disturbance causes damage. So maybe the longer the imbalance lasts the more harm is done which has to be repaired as well? Otherwise I cannot explain why I was better off for 3 months in hospital 16 months ago. I somehow guess that the acupuncture steered up my system again, which caused "damage" that wasn't there before.

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Punarbhava

 

@Punar:

2 years on Monday, thanks, but please congratulate me, when I am through wd <g>. Time goes by by itself, no real accomplishment on my part :)

 

Hey Maybe..... I'll be very happy to congratulate you when you are recovered. However, I do believe that you are to be commended for sticking things out this long. So, IMHO you really have accomplished so much!

 

 

That must have been a terrible experience when you could not walk sideways. I just cannot comprehend what those drugs do to our brains and bodies. This is so unbelievable...

 

Yes, it was frightening and yes, these drugs are so damaging. I'm still in disbelief that these drugs are legal. I remember telling my doctor that I would have been better off taking illegal drugs especially because there are support programs, validation and understanding, and most of all I would be respected by the medical profession and society in general, for getting "clean".

 

Those of us in psyche drug torture are NOT respected for wanting to get off the drugs. The medical profession treats us with indifference, anger, disdain, judgment ...........telling us that we must stay on the drugs (even for life).

 

I couldn't help but relay these thoughts to my ignorant, arrogant, condescending doctor. I also told him that I find it bizarre that there are no medical protocols in place to assist patients in safely gettting off these drugs, not to mention devastating that we are given no suppport whatsoever. I also mentioned that I find it interesting that they do NOT support the idea of becoming "drug-free".

 

If I was a cocaine addict, I would NOT be labelled with a mental illness but rather, with a drug problem and thus, I wouldn't be offered more drugs. So, (as I stated to several doctors actually) "WHY is it that you believe I should take MORE drugs? Would you tell a drug addict to take more drugs? Certainly not! Then why are you advising me to do so? It's your drugs that got me into this mess to begin with so why in the world would I want to expose myself to more?"

 

All I can say is I have a deepest disrespect (and that's putting it mildly) for these charlatans of medicine who claim to be healers. Not only have we been physically raped by the drugs they prescribe but also mentally, psychologically and spiritually raped by their repeated arrogance......their need to constantly deny what we are going through.

 

To feel alone and utterly afraid for one's life and to NOT be able to access health care for support for fear that they will only make things worse, is the greatest fear I have and will ever experience in my life. In fact, I equate modern medicine with the word "death". Oh, I better stop talking about this since, it gets my CNS too activiated.

 

 

And yes, I had something similar regarding the flashing lights. It can happen when I go to sleep and close my eyes. But they are not very intense. Still quite unnerving as everything else in wd.

 

Oh yes, similar experience only opposite re: eyes closed while mine happened with open eyes.

 

 

How are you doing right now?

 

I hestitate to share with you Maybe since, you may not experience the same. As you know I was doing so much better however, I did get hit with a wave (yet again) however, I truly believe the intensity of this wave would not have been as intense IF two major stressors were not added into the equation. In fact, I KNOW these stressors really set off my CNS in a bad way.

 

With that said, I do wish to share that I've been unable to walk for any distance for so long. I feared that my muscles were wasted since, I've been completely inactive for 4 years (two years bedridden while tapering plus 2 years post taper and too sick to function much at all).

 

However, I went out for a walk, not too long ago.......only planned on walking down one street or two if able. Well, I walked 4 streets plus 2 small streets and I was clipping along at a decent pace ...............covered a lot of ground within 30 mintues straight. I was SO UNBELIEVABLY HAPPY to KNOW that my stamina could bounce back so well despite being so out of shape for so long.

 

BTW, I've tried walking before but it only badly wiped me out. This time however, I felt GOOD afterwards!

 

So, this is very encouraging for me and allowed me to not focus on the wave that I got hit with but rather, on how I was going to feel once the wave passed. I hope this is encouraging for you. I truly believe you will see some substantial improvements very soon Maybe.

 

Always be mindful though of avoiding huge stressors, if possible. They are toxic to the CNS.

 

Soon, I will be leaving town for a while (going to a cottage) which I hope will be therapeutic and plan to return close to and/or fully recovered.

 

In the meantime, I know you will keep hanging in there but always remember that you're closer to recovery than what you may feel right now. Things really did turn for the better at the 25 or 25 1/2 month for me. I'm very confident that you will exhibit the same or even better.

 

 

Much More Healing to You and Blessed, Sacred Full Recovery!

 

 

Punar

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Altostrata

Very good to hear you're having some good periods, Pun. Have a lovely vacation. We'll miss you!

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Maybe

Yes, very good to hear that you see improvements, albeit you have been hit by another wave.I guess we all wish that there were a linear healing process and those darn waves.

 

And you are completely right regarding the treatment by our great western health system. They seem to make so much money with those darn pills, no one is interested to see what they can do to humans. But well, that's just human. Money is power.

 

Have a nice vacation, Punar! I hope you will get a lot of relieve and have a stressless time :)

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Punarbhava

Very good to hear you're having some good periods, Pun. Have a lovely vacation. We'll miss you!

 

Thank you so much on both accounts Alto! I'm trying to get caught up with some posts before I leave in a few days.

 

I actually thought I had turned the corner a short time ago but this recent wave has proved otherwise. However, I do really try to focus on how far I've come in an effort to off-set any discouragement or disappointment regarding not being fully recovered (at this point) as I had hoped.

 

Punar

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Punarbhava

Yes, very good to hear that you see improvements, albeit you have been hit by another wave.I guess we all wish that there were a linear healing process and those darn waves.

 

I won't deny that being hit with this recent wave was pretty upsetting although, as I mentioned, a few simultaneous stressor really high-jacked my CNS. The wave would have been far less intense otherwise. As I mentioned in my post to Alto, I have to focus on how far I've come.

 

At least now, even amid this last wave, I have an energy in my body that I just didn't have up until the 25 1/2 month mark. This is a HUGE, huge bonus for me since, even if I don't feel great, I'm still able to distract, engage in some activities etc. Prior to that, things were pretty bad.

 

And you are completely right regarding the treatment by our great western health system. They seem to make so much money with those darn pills, no one is interested to see what they can do to humans. But well, that's just human. Money is power.

 

Yes, so true. Sorry about my mini rant (lol). I get these odd purging bursts and let out my anger, however, most times, I have to suppress such thoughts since, it highjacks my F&F responses too easily and thus, is counterproductive to my recovery.color]

 

Have a nice vacation, Punar! I hope you will get a lot of relieve and have a stressless time :)

Thank you for the well wishes Maybe! I hope the time away will be therapeutic and thus, enhance my ability to recover sooner rather than later.

 

 

Take good care and as I mentioned, wait out another month or two. Life will become easier from that point on.

 

 

Much More Fabulous Healing to You!

 

 

Punar

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Maybe

Slowly I am again getting very afraid.

When I came home from work today, I had a short talk with one of my flat mates and while was explaning something, a weird intense "swoosh" went from my GI system to my brain. It was more on the right of my body and made me extreme "dizzy". Not vertigo, but as if I would fall over any second. This lasted maybe 5 to 10 seconds and then was gone. I still feel a bit weird though and have a light headache.

 

What the hell is going on in my body after 25 months?? Was that a reaction due to a body malfunction? Was it a good sign, because something changed back to its normal state (doesn't feel that way, though)?

 

Is it "normal" to have such weird symptoms that far out? To have changing symptoms every day? Currently I again feel damaged beyond repair. Many people write about consistent symptoms that change now and then, but not much about those weird single incidents.

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Altostrata

Well, you might get occasional weirdness. Things are still readjusting.

 

Did this happen only once? If so, don't dwell on it.

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Maybe

Yes, happened only once, though I still do not feel too good. Off-balance, light headaches in the back of my head. Just feeling weird.

I just do not understand, why I do get those single weird incidents now. I never had them in early wd. I just fear that I do something wrong or that if I do not do something special now, that I will get worse and not better.

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Altostrata

Generally, the treatment for orthostatic intolerance is gentle exercise.

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Maybe

But I did not stand up or so. I was standing and only moving slightly. The feeling started in my stomach region. It was completely different from the symptom I explained at the start of this thread, which was only around my head.

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