Aa
dysautonomia
I am 74 year female was well 12 year ago,then had infection ,asthma,treated with rulide affecting bowel --major for months.around same time had episodes of firstly flutter left of mid sternum withfast heart rate out of breath nausea and .very cold .These continued especially with in fections and mainly through the night, but every thing was going wrong.Night sweats extreme fatigue,aching like flu major pains muscles,intermittent times an overwhelming tiredness ; and falling to bed for long hours of sleep,etc.Diagnosed with fibromyalgia,cfs,neuro cardiogenic syncope;( without faint)
treatedthe latter with metoprolol (-and endep lowest dose;now stopped ) the metoprolol stopped chest pains etc til recently had infection;slight episode chest pain but with hay fever heat intolerance and OI have not been able to return to baseline.
Neurologist and cardiologist diagnosed nsc with tilt test even though inconclusive.
cardiologist treating dysautonomia now with zolft lowest dose-had reaction withdrawn ,waiting to return baseline .Do I require autonomic testing and which? Thank ful still have my funny side,age still has plusses .cheers
treatedthe latter with metoprolol (-and endep lowest dose;now stopped ) the metoprolol stopped chest pains etc til recently had infection;slight episode chest pain but with hay fever heat intolerance and OI have not been able to return to baseline.
Neurologist and cardiologist diagnosed nsc with tilt test even though inconclusive.
cardiologist treating dysautonomia now with zolft lowest dose-had reaction withdrawn ,waiting to return baseline .Do I require autonomic testing and which? Thank ful still have my funny side,age still has plusses .cheers
Drouts, flooding rains, and just found out another problem- ex-tropical cyclone Oswald! Maybe they are having trouble in Hawaii too because macadamia prices have sky-rocketed.
I did reply to macadamia nuts but it is not appearing here.
I didn't know we had a problem with our nut crop--hehe!
but i will try and find out about it--I listen to our weekly country program on tv called landline which usually covers these topics.
have a good day.
I didn't know we had a problem with our nut crop--hehe!
but i will try and find out about it--I listen to our weekly country program on tv called landline which usually covers these topics.
have a good day.
(Macadamia nuts- thought later how ,unwittingly, I asked a question that might be perceived as insulting... oops!)
Sounds like a lot of paperwork and hoops to jump through, but if you can save money, it's worth a try!
Trying to do the interstitial cystitis diet fairly faithfully, mine is flaring far less than it was. I did have a major flare though in the latter half of last year and was back to getting Elmiron cocktail bladder instillations via catheter for a little while.
I have some arthritis too, but the worst of mine is in my jaw joints. If you feel the knee is very painful, are you planning to get another opinion about replacement?
That is a big shift in weather! Much of the news from the national news networks is biased based on the agenda of the way most of the media leans, unfortunately. Are you guys still having issues with your nut crop in your country- Australia, right?
Trying to do the interstitial cystitis diet fairly faithfully, mine is flaring far less than it was. I did have a major flare though in the latter half of last year and was back to getting Elmiron cocktail bladder instillations via catheter for a little while.
I have some arthritis too, but the worst of mine is in my jaw joints. If you feel the knee is very painful, are you planning to get another opinion about replacement?
That is a big shift in weather! Much of the news from the national news networks is biased based on the agenda of the way most of the media leans, unfortunately. Are you guys still having issues with your nut crop in your country- Australia, right?
Hi thx for the info .
Having an episode of overwhelming fatigue at the moment, where all I can do is fall into bed and sleep--gp does not get dysautonomia so not much help.
The last time I saw present cardio I discreetly asked him does this cause spasm instead of coronary heart spasm --he said yes.
I had known of another person;( she chaired a cfs support group) who had asked me what were the symptoms of these episodes. Then said you have the same as me coronary heart spasm.Had medical background as her mum a doc.
I mentioned to the cardio I was then seeing was it that -he wrote back to my gp --she has it in her head it is coronary artery spasm.It was only a question needless to say I dumped him.
Thx again ---interesting spasm connection to dysautonomia--hope to be in touch again ;we do not have the same support systems, research ,or knowledgable specialists or gps as other countries.
Having an episode of overwhelming fatigue at the moment, where all I can do is fall into bed and sleep--gp does not get dysautonomia so not much help.
The last time I saw present cardio I discreetly asked him does this cause spasm instead of coronary heart spasm --he said yes.
I had known of another person;( she chaired a cfs support group) who had asked me what were the symptoms of these episodes. Then said you have the same as me coronary heart spasm.Had medical background as her mum a doc.
I mentioned to the cardio I was then seeing was it that -he wrote back to my gp --she has it in her head it is coronary artery spasm.It was only a question needless to say I dumped him.
Thx again ---interesting spasm connection to dysautonomia--hope to be in touch again ;we do not have the same support systems, research ,or knowledgable specialists or gps as other countries.
Welcome to our community!
I don't think coronary artery spasm (Prinzmetal's angina) is particularly common in dysautonomia, but here are a few places you may want to check out for more information if you haven't seen them already:
http://prinzmetal.us/
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001212/
The "summary" at the bottom of this article is excellent:
http://ajcc.aacnjournals.org/content/13/4/350.long
http://emedicine.medscape.com/article/153943-overview
I hope you are in good spirits and your docs are taking good care of you,
Heiferly.
I don't think coronary artery spasm (Prinzmetal's angina) is particularly common in dysautonomia, but here are a few places you may want to check out for more information if you haven't seen them already:
http://prinzmetal.us/
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001212/
The "summary" at the bottom of this article is excellent:
http://ajcc.aacnjournals.org/content/13/4/350.long
http://emedicine.medscape.com/article/153943-overview
I hope you are in good spirits and your docs are taking good care of you,
Heiferly.
hi living in hope,I have obtained a rebate of 143 dollars from Centrelink towards my utilities;gas & electricity each year.
I want a half fare Taxi card to get around; application form has many pages.My gp could have applied citing certain problems;1.Dysautonomia etc.,both knees athritis;one needs a total knee replacement which he thought didn't fit as it is not severe --- I called the senior clinical physiotherapist at the Alfred hospital and asked her opinion on her physical examination ,which was rated as 85% and the xray; comment was severe,--doc says moderate ,and disc problem..
3 The electrical utility gives 17% off summer bill if you state you have heating intolerance ,but their form was contradictory in two clauses( needs checking.)
4.I lease a unit from a housing co/op and as my air conditioner is not adequate I wanted them to put one in, but doc said it would carry more weight coming from cardiologist.I can see that, but don't care for asking a top busy cardio.First time I have asked for support, that in some cases I have been eligible for years.
An urologist dx interstitial cystitis after a cystoscopy years ago, but I don't have
as much trouble with it these days ,so I understand you.
A lovely day here today--we have all kinds of weather in one day and temp. can drop 20 degrees in a few minutes with a change ,keeps you on your toes!
Another one of the many long weekend holidays we have here. The media covers such a lot of USA news here which is great. Well cheers
I want a half fare Taxi card to get around; application form has many pages.My gp could have applied citing certain problems;1.Dysautonomia etc.,both knees athritis;one needs a total knee replacement which he thought didn't fit as it is not severe --- I called the senior clinical physiotherapist at the Alfred hospital and asked her opinion on her physical examination ,which was rated as 85% and the xray; comment was severe,--doc says moderate ,and disc problem..
3 The electrical utility gives 17% off summer bill if you state you have heating intolerance ,but their form was contradictory in two clauses( needs checking.)
4.I lease a unit from a housing co/op and as my air conditioner is not adequate I wanted them to put one in, but doc said it would carry more weight coming from cardiologist.I can see that, but don't care for asking a top busy cardio.First time I have asked for support, that in some cases I have been eligible for years.
An urologist dx interstitial cystitis after a cystoscopy years ago, but I don't have
as much trouble with it these days ,so I understand you.
A lovely day here today--we have all kinds of weather in one day and temp. can drop 20 degrees in a few minutes with a change ,keeps you on your toes!
Another one of the many long weekend holidays we have here. The media covers such a lot of USA news here which is great. Well cheers
It is a wonderful thing to have a true friend!
With this particular condition, I have learned to make changes. I have more than one aspect of dysautonomia...interstitial cystitis, migraines, irritable bowel syndrome as well as I.S.T. and P.O.T.S.- some are typically more easy to deal with than others.
What sort of assistance are you going after? I hope you get the three more!
With this particular condition, I have learned to make changes. I have more than one aspect of dysautonomia...interstitial cystitis, migraines, irritable bowel syndrome as well as I.S.T. and P.O.T.S.- some are typically more easy to deal with than others.
What sort of assistance are you going after? I hope you get the three more!
Hi , yes ;accessed the inbox ok--thx also for reply.
Great to get a reply when i log in.I must tell you -Today is AUSTRALIA DAY!
January 26th.
A dear friend called last night,so I still have at least one! A true one;some others are just hanging on by the skin of their teeth though. Well never mind I guess it must be hard on them !
I have a great daughter and a married son and two grand children in japan .
A younger sister of mine lives in Sacramento,CA.so chat to her daily .Her husband has mantle lymphoma .A wonderful guy.
How do you manage with your condition?Some people who write in seem to have a very hard time of it .I am lucky in that psychologically I handle it well. aided by a wacky sense of humour and an insatiabile curiosity of everything.
Take care Ps.With some cunning? careful planning got my gp to sign one of my papers for assistance- three more to go.cheers
Great to get a reply when i log in.I must tell you -Today is AUSTRALIA DAY!
January 26th.
A dear friend called last night,so I still have at least one! A true one;some others are just hanging on by the skin of their teeth though. Well never mind I guess it must be hard on them !
I have a great daughter and a married son and two grand children in japan .
A younger sister of mine lives in Sacramento,CA.so chat to her daily .Her husband has mantle lymphoma .A wonderful guy.
How do you manage with your condition?Some people who write in seem to have a very hard time of it .I am lucky in that psychologically I handle it well. aided by a wacky sense of humour and an insatiabile curiosity of everything.
Take care Ps.With some cunning? careful planning got my gp to sign one of my papers for assistance- three more to go.cheers
We've had freezing rain here where I live- too cold to hang out outside! Were you able to find the inbox okay and get to my private message? I get e-mailed when I get a private message and a person can access the inbox that way too if it was set up that way when you registered.
Dysautonomia, orthostatic intolerance, dysfunction of your autonomic nervous system- you can use any of those. :0)
If it's the same as it was years ago when I graduated from nursing school, back then, the word was while nurses were required to have continuing education to keep up on their license, not so with medical doctors. And while some doctors like to keep up on things, I don't think others do so much. I used to get people at doctor's offices asking me what's that when I said I had P.O.T.S.- they'd never heard of it.
Dysautonomia, orthostatic intolerance, dysfunction of your autonomic nervous system- you can use any of those. :0)
If it's the same as it was years ago when I graduated from nursing school, back then, the word was while nurses were required to have continuing education to keep up on their license, not so with medical doctors. And while some doctors like to keep up on things, I don't think others do so much. I used to get people at doctor's offices asking me what's that when I said I had P.O.T.S.- they'd never heard of it.
Hi 'A change of topic --Geee it sure is good ,a cool change has blown in --don't have to stay inside all day .
Thx for directions on this page . I feel a long way from dysautonomia action ; such a lot seems to be happening every where but here, but it has been great to be in touch with others , and to get such a lot of info from the web on these conditions-- meanwhile how come doctors don't know about it?
I was thinking after reading about the latest decisions made to put so many illnesses into the category of psychiatric that it might be better for me to just say I have dysautonomia.The funny thing about this is i used to joke that whereas the rest of my body is up the put ,well my brain is great!----hmmm that one came back at me--still learning at 74 haha.
Thx for directions on this page . I feel a long way from dysautonomia action ; such a lot seems to be happening every where but here, but it has been great to be in touch with others , and to get such a lot of info from the web on these conditions-- meanwhile how come doctors don't know about it?
I was thinking after reading about the latest decisions made to put so many illnesses into the category of psychiatric that it might be better for me to just say I have dysautonomia.The funny thing about this is i used to joke that whereas the rest of my body is up the put ,well my brain is great!----hmmm that one came back at me--still learning at 74 haha.
Chest pains- to the left of the sternum. I was told by a cousin of mine who I learned suffered from orthostatic tachycardia herself that these chest pains can be normal with with P.O.T.S.. This helped me to relax some about it because I kept feeling like it was an emergency. I also had iron deficiency early on and believe that could have been contributing to the chest pains back then.
To find the private message, look at the right top side of your screen, just below the 'Search Medhelp' box and click on 'Inbox'.
Hydration, avoiding heat- good advice from your cardiologist there.
To find the private message, look at the right top side of your screen, just below the 'Search Medhelp' box and click on 'Inbox'.
Hydration, avoiding heat- good advice from your cardiologist there.
Hi living in hope, thanks for your input .No I hav'nt had the heart monitor for thirty days.
Please detail location ,and after effects of chest pains as they can be from reflux or fibromyalgia. etc.
I am sorry where do I go for private message--not too crash hot with this technology.
thx again to one and all for comments take care.
Ps. cardiologists advice ( on last visit two months ago) besides taking zoloft was keep hydrated,keep out of heat,no hot showers and wait 2-3 months to see if you return to baseline.
Please detail location ,and after effects of chest pains as they can be from reflux or fibromyalgia. etc.
I am sorry where do I go for private message--not too crash hot with this technology.
thx again to one and all for comments take care.
Ps. cardiologists advice ( on last visit two months ago) besides taking zoloft was keep hydrated,keep out of heat,no hot showers and wait 2-3 months to see if you return to baseline.
Did they do the heart monitor for thirty days? (They did that for my sibling.) Some on this forum have spoken of loop monitors.
I found Zoloft to be a nasty drug when it was given to me (unrelated) when it came to side effects. And going off it gave me flu like symptoms, including low grade fever. I hope you are faring better.
I read something to do with 'syndrome X' on an exploring road, having chest pains myself. See private message for more details.
I found Zoloft to be a nasty drug when it was given to me (unrelated) when it came to side effects. And going off it gave me flu like symptoms, including low grade fever. I hope you are faring better.
I read something to do with 'syndrome X' on an exploring road, having chest pains myself. See private message for more details.
Hi thanks for your comments am trying to take in & respond to all comments accurately --also it is so difficult to be informed or know where and what needs to be looked at in victoria Australia.Prof.M. Esler is at Alfred hospital Melbourne at the autonomic testing dept but not taking more pts.waiting on a call froma colleague of his to call to see if i may get in that way. The meteprolol stopped the episodes of chest pain followed by shock- apparently this is a coronary artery spasm which is caused by dysautonomia or other triggers like heat intolerance; both I have.Almost impossible to pick up on Ecg. Known of others who have had it controlled with meds--I have not come across anyone on the web having it.
I have had scattered episodes of arrhythmias not on holter thoughbut dropsof b.p.cardiologist thinks i am a tough case.and it would takelots of tests for sub sets. Didnt want me on florinef-age factor i guess--he thought zoloft might equalize regulation in brain.I say he is abusy top cardiologist who hasnt got the time to devote to a tough case. I know there is something affecting the heart at times but I feel is as they say from dysfunction of the brain not regulating autonomic system not basically with the heart. Am giving Cardio one more chance but following other avenues for tests.
sorry long winded appreciate your input,have u heard of others with coronary artery spasm .local gp knows littlebut listens-who else is there here who is informed-been searching still
take care , 39 degrees C.here to day and lots of bush fires cheers
I have had scattered episodes of arrhythmias not on holter thoughbut dropsof b.p.cardiologist thinks i am a tough case.and it would takelots of tests for sub sets. Didnt want me on florinef-age factor i guess--he thought zoloft might equalize regulation in brain.I say he is abusy top cardiologist who hasnt got the time to devote to a tough case. I know there is something affecting the heart at times but I feel is as they say from dysfunction of the brain not regulating autonomic system not basically with the heart. Am giving Cardio one more chance but following other avenues for tests.
sorry long winded appreciate your input,have u heard of others with coronary artery spasm .local gp knows littlebut listens-who else is there here who is informed-been searching still
take care , 39 degrees C.here to day and lots of bush fires cheers
I am surprised the cardiologist went from the beta blocker to Zoloft. Did they say why they were not considering midodrine or Florinef for the orthostatic intolerance? I can guess about the midodrine, as it seemed to give me a side effect of additional chest pains.
Re: the Florinef- do you have kidney problems or problems with the steroidal nature of the medication? Did they not suggest compression stocking, plenty of fluid intake and salt?
Besides the tilt table test, which seems to be one of the main tests most doctors do for dysautonomia which involves orthostatic intolerance, did they do:
A) check cardiac enzymes to rule out heart attack with nausea, chest pains, and shortness of breath?
B) an event holtor monitor to check for heart arrhythmias (irregularities in rhythm)?
C) an echocardiogram?
D) a nuclear stress test, if you could manage it, to check for blockages in the heart?
E) a complete iron panel to make sure you weren't iron deficient with your palpitations, shortness of breath and extreme fatigue (and not just look at a complete blood count)?
F) check your electrolytes (including your potassium and salt) to be sure they are in balance (with your muscle cramps and orthostatic intolerance)?
G) your cortisol and aldosterone levels... did they rule out Addison's disease... and also do a thorough check of your thyroid function with your symptoms?
If they have ruled out basic underlying causes, getting referred to a clinic which specializes in dysautonomia for further testing may be something you wish to pursue. It takes a referral and often, patience waiting to get in with an appointment. Here's a resource for dysautonomia specialist listings:
http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Specialists?hp_id=717
Re: the Florinef- do you have kidney problems or problems with the steroidal nature of the medication? Did they not suggest compression stocking, plenty of fluid intake and salt?
Besides the tilt table test, which seems to be one of the main tests most doctors do for dysautonomia which involves orthostatic intolerance, did they do:
A) check cardiac enzymes to rule out heart attack with nausea, chest pains, and shortness of breath?
B) an event holtor monitor to check for heart arrhythmias (irregularities in rhythm)?
C) an echocardiogram?
D) a nuclear stress test, if you could manage it, to check for blockages in the heart?
E) a complete iron panel to make sure you weren't iron deficient with your palpitations, shortness of breath and extreme fatigue (and not just look at a complete blood count)?
F) check your electrolytes (including your potassium and salt) to be sure they are in balance (with your muscle cramps and orthostatic intolerance)?
G) your cortisol and aldosterone levels... did they rule out Addison's disease... and also do a thorough check of your thyroid function with your symptoms?
If they have ruled out basic underlying causes, getting referred to a clinic which specializes in dysautonomia for further testing may be something you wish to pursue. It takes a referral and often, patience waiting to get in with an appointment. Here's a resource for dysautonomia specialist listings:
http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Specialists?hp_id=717
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