Aa
I am sure i have Dysautonomia , Dismissed by countless doctors.
Hello , i've been thinking i have dysautonomia for some time now and i wanted to know if anybody can give me an advice/opinion about whether or not i might have it , and if yes then what can i do about it. Thanks in advance.
Allright , its quite a bit of a story ( as im sure you all know ) but i will tell you everything.
Since i was 6 i have been to psychiatrists and psychologists due to fear/phobias and anxiety which all manifested in fear ( for example: noises , airplanes , fear of high places , fear of strangers etc.. ) no physical symptoms whatsoever.
as i recall , i've been first prescribed cipramil ( a ball or two , cant really recall how much mg since i was very little and cant find the prescriptions either , for about 2 years or so. then i switched to risperdal ( 10 mg i think ) for about a few months , then combined it with prozac for a few a years and finally stopped taking risperdal ( parents complained of weight gain , i dont recall it myself , and was left on prozac alone for until a year ago ( first started prozac with 5 mg , steadily increased over the years to 30mg till last year ) i would also like to mention that i have had no chronic ( serious ) diseases / disorders / etc.. over all the years except asthma when i was about 4 years old. ( also had no visible or disturbing side-effects during those times ) now that we're finished with my medical history , lets move on to the current problem.
as you have read , i have stopped taking prozac about a year ago ( gradually and under the psychiatrist's orders of course , he is also a professor by the way ) due to headache. not headaches , headache. i have gradually began to feel pressure on all of my head , which eventually ceased to grow up and fixed itself on a mild irritating state which i have to this very day ( right now included ) . it never stops , it never increases , it never decreases , it never changes in any kind of way. i can be in shock , panic , fear , bliss , tiredness , calmness etc.. you name it. the headache wont change for anything and haven't ceased even for a fraction of a second in the entire year. like a permanent band of metal stuck inside the skull. i told this to the psychiatrist , and he said that an headache is a possible side-effect of prozac and he will withdraw it so it will pass. after finally withdrawing off prozac and passing the time which its supposed to leave the system , i have waited for the headache to pass. mysteriously , it never did. i have told it to my psychiatrist and he said that he thinks the headache is actually anxiety-related and that maybe prozac wasn't enough / the right drug to keep the anxiety at bay ( i would also like to mention that in the last 3 years or so i ceased to have all the fear related problems i described earlier , but i've been told to keep taking prozac so it wont come back or something ) and offered me 2 other anti-depressant drugs ( i cant recall their names exactly ). however , i have further questioned him about why my headache wont pass and how can i possibly have an anxiety headache while under 30mg prozac and if it is possible that it's caused by prozac itself ( and will last very long ). he then said that it's impossible and became irritated from the questions , to some responding that he doesn't know and i should take the other 2 drugs and see if they will help. at the time i became very suspicious of prozac and psychiatric drugs due to my sudden headache. i refused to take other drugs until my headache will pass , and haven't come back to this psychiatrist. now i've kept waiting a few months but the headache hasn't passed so i went to a doctor who sent me to a series of tests ( blood , ecg , urine , etc.... ) all came out normal. then i went to a neurologist and had an MRI done. was normal. i then went to another neurologist who told me it is Tension Headache and that i can take some drugs to ease it or just get along with it. i chose to just get along with it because it isn't really painful , it's just very annoying. so it was that i just kept on with my ordinary business , thinking that the case was closed , until about 5 months ago. i was sitting on my bed watching tv , when suddenly i felt an enormous feeling of being choked , not getting enough air , being about to faint that i couldn't stand anymore and my parents helped me to the nearest hospital. there a doctor checked me and ran a couple of tests ( ecg . blood oxygen level etc.. ) and told me im fine. that i have nothing. even though the initial feeling calmed down a little , i still had ( and have ) chronic "residues" or feelings/symptoms that never left me ( just like the headache ) and i will list some of them , the first ones being just after the sudden feeling and some months later , and the latest being symptoms that kept showing up : Constant feeling of lack of air , chest tightness ( feeling of pressure on the chest ) , irregular breathing , difficulty swallowing , difficulty concecrating , learning , reading etc.. , speech difficulty , stupor ( feel of being drugged , dazed , not attached to my body or to the world normally ) near fainting spells , weakness ( not in the limbs , more of a general feeling aka fatigue ) , severe intolerance to physical exertion ( even the smallest like crouching or walking ) heart palpitations ( felt , not diagnosed ) fast heart rate , slow rate , irregular heart rate , strange heartbeats , burping , muscle spams , general body tremor ( can keep my body still without it shaking ) , blurred vision , sight problem ( flying black and white dots ) , short-term memory loss , feeling of lack of breath and chest pressure while lying down , feeling of fainting while standing up and maybe others that i have forgotten ( im having trouble with my memory ) each and everyone of these symptoms is very severe. i have stopped going to school , i have almost stopped leaving my house in general , i can barley function ( i even have trouble eating due to breathing difficulty ) and most my activity is trying to keep myself alive and searching for help. . now i of course kept going to countless doctors complaining about these symptoms ( aswell as 2 neurologists , 1 cardiologist and several other hospital experts and proffesors ) i have had many tests ( echo-cardiography , holter-ecg , EEG , etc.. ) done , all came out normal. and all of these doctors , after have been told all that im telling you now didn't seem to be alarmed at all and either told me that i have either nothing , or mostly , a psychiatric condition ( most have said anxiety ). after all the tests i started searching on the internet about such a condition and found out about dysautonomia. i even went to Professor neurologist who specializes in dysautonomia , worked with dysautonomia patients in an hospital and conducts research on nerve diseases , who admitted himself to me to be a dysautonomia expert and told me he is ABSOLUTELY certain i dont have dysautonomia and calimed it is Somatization. i have been to a couple more psychiatrist's after hearing these things from everyone and their conclusions ranged between anxiety , somatization , depression and according to one , Psychosis. I have been offered by different psychiatrists different drugs : Zyprexia , Fuvoxil , Going back to risperdal , or to prozac. ( how am i supposed to know which psychiatrist got the right drug exactly ?? ) I refused all of them. because i am certain i dont ONLY have a psychiatric condition ( i actually strongly agree having anxiety and depression as a result of my illness ) but rather , dysatuonomia ( aswell as i have started reading a lot about psychiatric drugs and psychiatry and , let's put it this way - didn't like what i see ).
Will continue in response.
Allright , its quite a bit of a story ( as im sure you all know ) but i will tell you everything.
Since i was 6 i have been to psychiatrists and psychologists due to fear/phobias and anxiety which all manifested in fear ( for example: noises , airplanes , fear of high places , fear of strangers etc.. ) no physical symptoms whatsoever.
as i recall , i've been first prescribed cipramil ( a ball or two , cant really recall how much mg since i was very little and cant find the prescriptions either , for about 2 years or so. then i switched to risperdal ( 10 mg i think ) for about a few months , then combined it with prozac for a few a years and finally stopped taking risperdal ( parents complained of weight gain , i dont recall it myself , and was left on prozac alone for until a year ago ( first started prozac with 5 mg , steadily increased over the years to 30mg till last year ) i would also like to mention that i have had no chronic ( serious ) diseases / disorders / etc.. over all the years except asthma when i was about 4 years old. ( also had no visible or disturbing side-effects during those times ) now that we're finished with my medical history , lets move on to the current problem.
as you have read , i have stopped taking prozac about a year ago ( gradually and under the psychiatrist's orders of course , he is also a professor by the way ) due to headache. not headaches , headache. i have gradually began to feel pressure on all of my head , which eventually ceased to grow up and fixed itself on a mild irritating state which i have to this very day ( right now included ) . it never stops , it never increases , it never decreases , it never changes in any kind of way. i can be in shock , panic , fear , bliss , tiredness , calmness etc.. you name it. the headache wont change for anything and haven't ceased even for a fraction of a second in the entire year. like a permanent band of metal stuck inside the skull. i told this to the psychiatrist , and he said that an headache is a possible side-effect of prozac and he will withdraw it so it will pass. after finally withdrawing off prozac and passing the time which its supposed to leave the system , i have waited for the headache to pass. mysteriously , it never did. i have told it to my psychiatrist and he said that he thinks the headache is actually anxiety-related and that maybe prozac wasn't enough / the right drug to keep the anxiety at bay ( i would also like to mention that in the last 3 years or so i ceased to have all the fear related problems i described earlier , but i've been told to keep taking prozac so it wont come back or something ) and offered me 2 other anti-depressant drugs ( i cant recall their names exactly ). however , i have further questioned him about why my headache wont pass and how can i possibly have an anxiety headache while under 30mg prozac and if it is possible that it's caused by prozac itself ( and will last very long ). he then said that it's impossible and became irritated from the questions , to some responding that he doesn't know and i should take the other 2 drugs and see if they will help. at the time i became very suspicious of prozac and psychiatric drugs due to my sudden headache. i refused to take other drugs until my headache will pass , and haven't come back to this psychiatrist. now i've kept waiting a few months but the headache hasn't passed so i went to a doctor who sent me to a series of tests ( blood , ecg , urine , etc.... ) all came out normal. then i went to a neurologist and had an MRI done. was normal. i then went to another neurologist who told me it is Tension Headache and that i can take some drugs to ease it or just get along with it. i chose to just get along with it because it isn't really painful , it's just very annoying. so it was that i just kept on with my ordinary business , thinking that the case was closed , until about 5 months ago. i was sitting on my bed watching tv , when suddenly i felt an enormous feeling of being choked , not getting enough air , being about to faint that i couldn't stand anymore and my parents helped me to the nearest hospital. there a doctor checked me and ran a couple of tests ( ecg . blood oxygen level etc.. ) and told me im fine. that i have nothing. even though the initial feeling calmed down a little , i still had ( and have ) chronic "residues" or feelings/symptoms that never left me ( just like the headache ) and i will list some of them , the first ones being just after the sudden feeling and some months later , and the latest being symptoms that kept showing up : Constant feeling of lack of air , chest tightness ( feeling of pressure on the chest ) , irregular breathing , difficulty swallowing , difficulty concecrating , learning , reading etc.. , speech difficulty , stupor ( feel of being drugged , dazed , not attached to my body or to the world normally ) near fainting spells , weakness ( not in the limbs , more of a general feeling aka fatigue ) , severe intolerance to physical exertion ( even the smallest like crouching or walking ) heart palpitations ( felt , not diagnosed ) fast heart rate , slow rate , irregular heart rate , strange heartbeats , burping , muscle spams , general body tremor ( can keep my body still without it shaking ) , blurred vision , sight problem ( flying black and white dots ) , short-term memory loss , feeling of lack of breath and chest pressure while lying down , feeling of fainting while standing up and maybe others that i have forgotten ( im having trouble with my memory ) each and everyone of these symptoms is very severe. i have stopped going to school , i have almost stopped leaving my house in general , i can barley function ( i even have trouble eating due to breathing difficulty ) and most my activity is trying to keep myself alive and searching for help. . now i of course kept going to countless doctors complaining about these symptoms ( aswell as 2 neurologists , 1 cardiologist and several other hospital experts and proffesors ) i have had many tests ( echo-cardiography , holter-ecg , EEG , etc.. ) done , all came out normal. and all of these doctors , after have been told all that im telling you now didn't seem to be alarmed at all and either told me that i have either nothing , or mostly , a psychiatric condition ( most have said anxiety ). after all the tests i started searching on the internet about such a condition and found out about dysautonomia. i even went to Professor neurologist who specializes in dysautonomia , worked with dysautonomia patients in an hospital and conducts research on nerve diseases , who admitted himself to me to be a dysautonomia expert and told me he is ABSOLUTELY certain i dont have dysautonomia and calimed it is Somatization. i have been to a couple more psychiatrist's after hearing these things from everyone and their conclusions ranged between anxiety , somatization , depression and according to one , Psychosis. I have been offered by different psychiatrists different drugs : Zyprexia , Fuvoxil , Going back to risperdal , or to prozac. ( how am i supposed to know which psychiatrist got the right drug exactly ?? ) I refused all of them. because i am certain i dont ONLY have a psychiatric condition ( i actually strongly agree having anxiety and depression as a result of my illness ) but rather , dysatuonomia ( aswell as i have started reading a lot about psychiatric drugs and psychiatry and , let's put it this way - didn't like what i see ).
Will continue in response.
You are not going crazy! The symptoms you described are exactly the symptoms I have been experiencing for 9 years (except maybe for a few of them), and probably not yet as severe as yours.
I sympathize with you. I know exactly when my symptoms started occuring (after breast implant surgery). It caused trauma to my autonomic nervous system. The symptoms are not only frightening but when you go into a doctor's office and try to explain all of the symptoms, you sound crazy to yourself -- imagine what the doctors are thinking! But they don't understand because most doctors are trained in Western Medicine and understand only Drugs and Surgery. If they can't help you with Drugs or Surgery, they can't help you. I don't take any drugs, and I'm always looking for natural ways to treat the body. I am soon going to visit a Quantum Reflex Analysis Practitioner. They focus on providing the body what it needs to begin healing itself. The philosophy is that only three basics cause human health challenges: physical damage, chemical insult, (both of which include foods and non-foods that are ingested), and electrical interference. When you injure the body in any way, (physically or otherwise), the electrical field in that area is disturbed by congregating toxins. ALL healing, all scars, leave toxins behind. The QRA practitioner works with the individual's own body to start it healing. I have not tried this yet myself, but I am going to. One thing I know for sure when it comes to HEALING the body.......it's not drugs or surgery that are going to do it! The body is not lacking in drugs and surgery - that's not what it needs. It's about learning where the deficiencies are, where the damage is, and working along with the body's own natural ability to heal itself.
I feel for you and I think it would be well worth your time and money to try a different path. Obviously the one you have been on all these years is not working. I hope you find help.
S.C.
A fellow sufferer
I sympathize with you. I know exactly when my symptoms started occuring (after breast implant surgery). It caused trauma to my autonomic nervous system. The symptoms are not only frightening but when you go into a doctor's office and try to explain all of the symptoms, you sound crazy to yourself -- imagine what the doctors are thinking! But they don't understand because most doctors are trained in Western Medicine and understand only Drugs and Surgery. If they can't help you with Drugs or Surgery, they can't help you. I don't take any drugs, and I'm always looking for natural ways to treat the body. I am soon going to visit a Quantum Reflex Analysis Practitioner. They focus on providing the body what it needs to begin healing itself. The philosophy is that only three basics cause human health challenges: physical damage, chemical insult, (both of which include foods and non-foods that are ingested), and electrical interference. When you injure the body in any way, (physically or otherwise), the electrical field in that area is disturbed by congregating toxins. ALL healing, all scars, leave toxins behind. The QRA practitioner works with the individual's own body to start it healing. I have not tried this yet myself, but I am going to. One thing I know for sure when it comes to HEALING the body.......it's not drugs or surgery that are going to do it! The body is not lacking in drugs and surgery - that's not what it needs. It's about learning where the deficiencies are, where the damage is, and working along with the body's own natural ability to heal itself.
I feel for you and I think it would be well worth your time and money to try a different path. Obviously the one you have been on all these years is not working. I hope you find help.
S.C.
A fellow sufferer
I think it is all from the meds you have been on since you were very young. They can cause these problems after you get off them. Check out the group "withdrawal and recovery" on Yahoo Groups.You will get some help there.
oh and i forgot to mention , i feel better in cold temperatures , with all the symptoms. the colder it is the better i feel. which also created by the ironic state that every time i arrived at a clinic or an hospital which have air conditioners set to the lowest temperatures , my symptoms are getting much better and that may have caused some doctors to miss some signs they would otherwise detects.
Oh and i am 17 years old , male. not smoking , drugs , never drank alcohol , no family relatives with such problems.
i have suggested to all the doctors and psychiatrists having dysautonomia and they have dismissed it utterly , saying i don't have even a single bit of any kind of physical condition at all. i have asked the dysautonomia expert for a blood tilt test , he said it isn't neccesary.
It seems to me that to everyobody in here with much lesser symptoms many doctors paid more attention and suggested dysautonomia and further testings and observation. i have no idea why i've been immediately classified as a psych case by over 50 doctors. without any re-considerations. Maybe lack of knowledge at best , discrimination due to my psychiatric history at the bad , and "unknown" reasons at the worst.
So here i am writing here not knowing what else to do , will much appreciate your opinions and advices. also , sorry for the long text , but i didn't want to leave anything misunderstood or unclear , you can always skip past what you already understood.
Also , i would offer you to take a look at this article: http://www.bio.net/bionet/mm/neur-sci/1997-June/029019.html
which i found during my extensive search for answers possible causes to my condition , i have never read this article before i started having all these problems since 6 months ago. your opinions regarding this will also be much appreciated.
Thanks.
It seems to me that to everyobody in here with much lesser symptoms many doctors paid more attention and suggested dysautonomia and further testings and observation. i have no idea why i've been immediately classified as a psych case by over 50 doctors. without any re-considerations. Maybe lack of knowledge at best , discrimination due to my psychiatric history at the bad , and "unknown" reasons at the worst.
So here i am writing here not knowing what else to do , will much appreciate your opinions and advices. also , sorry for the long text , but i didn't want to leave anything misunderstood or unclear , you can always skip past what you already understood.
Also , i would offer you to take a look at this article: http://www.bio.net/bionet/mm/neur-sci/1997-June/029019.html
which i found during my extensive search for answers possible causes to my condition , i have never read this article before i started having all these problems since 6 months ago. your opinions regarding this will also be much appreciated.
Thanks.
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