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Recently Diagnosed: Medicine or Alternative treatment?
Hi there. I was recently 'diagnosed' with dysautonomia - really, it was just the doctor saying I have IST and POTS and various other symptoms and they don't know what is causing it. My BP has always (since childhood) been very low - 90/60, and my pulse has always been in the 90s. After a virus in December I was getting some chest pain and they thought I had a heart condition: I had two CTS, ultrasounds, three Holter monitor tests. All came back normal, except I was tachycardic app. 30% of the time. I also have Raynaud's disease (longstanding), hypothyroidism (10 years), always been quite tired, low tolerance to exercise, extremely thirsty, anxious, etc. So, this is a longstanding thing. Perhaps a bit worse now due to age, having had twins (aged 4) and general stress.
The doctor wants me to try 40mg of propranolol (beta-blocker) a day. I haven't started this as a) I don't want to get even more tired and b) I've read it's not always the best for people with low blood pressure and Raynaud's
My questions: am I foolish to want to try to address this via other means? Is this possible? I'm thinking maybe acupuncuture, herbal medicine, I don't know. Any help would be very much appreciated!! If you do think I should just go on the meds, too, please do let me know.
I am very confused and not getting much help from the medical establishment about this.
Sasha
The doctor wants me to try 40mg of propranolol (beta-blocker) a day. I haven't started this as a) I don't want to get even more tired and b) I've read it's not always the best for people with low blood pressure and Raynaud's
My questions: am I foolish to want to try to address this via other means? Is this possible? I'm thinking maybe acupuncuture, herbal medicine, I don't know. Any help would be very much appreciated!! If you do think I should just go on the meds, too, please do let me know.
I am very confused and not getting much help from the medical establishment about this.
Sasha
i am a 54 yr old male that has suffered all my life with nerves i thought i had an ulcer when i was 8 i thought was in the hospital 1 month had high bp since i was a kid the slightest stress would make my face red as a beet not very pleasent to have all your class mates make fun of your blushing ended up with gynocamastia facial flushing anxiety and made life a struggle as long as i can remember i was diagnosed with a chemical imbalance around 19 trs old went from 210 to 128lbs at 20 yrs of age hard school life home life and definetly job wise could never catch on terrible at math was put on inderal was like i was reborn a second chance i thought it wore off went to endo for gynocamsastia had resolved surgically at age 30 never took my shirt off went to cleveland clinic before surgery to make sure nothing else going on because ive always was a suspsious pheo or carcinoid patient still could be rapid weight loss led a diagnoses of graves disease no fun i broke my leg and developed rsd---in 1991 diagnosed with hyper-beta adranergic state----terrible life had surgery for small infection but woke up with respitory difficulties and elongated uvula you name it ive had it been to mayo who reaffermed hyper-beta to much adreniline and heart stimulation known as irritable heart very tough to live with i know my father and his mother were both effected with dysautonamia my tsh was 92 2 months ago while i take my thyroid medicine makes me feel hyper thyroid or just plain old panic attacks nothing new had them all my life married 18 yrs finally just let her out of this prison i call my body am afraid to subject anyone to me very sad but thanks for listening i have tried it done went to the best of the best think this is primary failure-anyone with this condition please rethink any elective surgery it has aged me mentally 10 yrs at least--youthful appearence is definately a double edged sword all of my dads syblings cousins look so young for thier age my dad passed away at 83 looked early 60s all my class mates look much older than my self not a compliment but a warning sign for all that suffer with constent worry or anxiety and poor relationships with difficulty doing anything strenuous facial flushing lack of heat and cold weather a long list of drs for amillion difficulties as myself look no further than dysautanomia it is looking at you in the mirror crying out for help and no help to the rescue---my deepest sympathy for all that wear the same badge as myself-i do not feel sorry for myself just dissapointed with the medical community i was always so afraid of going to the dr of what they would do to me i got up enough courage to find out what they couldnt do FOR me very dissapointed with all the wasted money time having hopes and dreams shattered but still here----my family is all from germany but are not jewish but my grandmother and grandfather have jewish last names for family dysautanomia------good luck to you all wish i was born 50 yrs later when being a kid they may have had a clue if you think your kids have it anything i have listed GO RUN DONT STOP TILL YOU GET AN ANSWER ---PLEASE I AM BEGGING OF YOU
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I was diagnosed with interstitial cystitis via cystoscopy with hydrodistention.
I was diagnosed with endometriosis on my bladder via a laporotomy surgery.
If endometriosis has actually invaded the bladder, I read where an MRI is supposed to be able to pick it up if the lesion is large enough to be spotted via that imaging. Mine was on the dome of the bladder wall. I also had experience with a large uterine fibroid pushing on my bladder which made me feel like I had to go about every five minutes it seemed like.
Regarding your acupuncture- if you find it difficult to afford financially, you might try to work out if you could pay less for visit or not with the provider. I had an acupuncturist who was nice enough to work with me on price (saw her for migraines but she treated the whole person). Of course, I felt like my P.O.T.S. symptoms were worse after a treatment.
I was diagnosed with endometriosis on my bladder via a laporotomy surgery.
If endometriosis has actually invaded the bladder, I read where an MRI is supposed to be able to pick it up if the lesion is large enough to be spotted via that imaging. Mine was on the dome of the bladder wall. I also had experience with a large uterine fibroid pushing on my bladder which made me feel like I had to go about every five minutes it seemed like.
Regarding your acupuncture- if you find it difficult to afford financially, you might try to work out if you could pay less for visit or not with the provider. I had an acupuncturist who was nice enough to work with me on price (saw her for migraines but she treated the whole person). Of course, I felt like my P.O.T.S. symptoms were worse after a treatment.
Thanks everyone. They did do further resting re: Addison's and I definitely don't have it and they did do an echo to rule out congestive heart failure.
Interesting re: UTIs, I will ask my doctor. Sometimes the culture has come back positive and othertimes not.
I have an appointment with my GP tomorrow - going to print this out and bring it along. I started acupuncture yesterday - we'll see how it goes. I have no idea whether it will help or not! I figure I will give it three months to see if it makes any difference. It's expensive, too.
Thank you so much for your help!
Interesting re: UTIs, I will ask my doctor. Sometimes the culture has come back positive and othertimes not.
I have an appointment with my GP tomorrow - going to print this out and bring it along. I started acupuncture yesterday - we'll see how it goes. I have no idea whether it will help or not! I figure I will give it three months to see if it makes any difference. It's expensive, too.
Thank you so much for your help!
Hi there. I also have young kids and have been trying to tackle my problems without drugs. I was diagnosed with POTS three years ago by my cardiologist but now with pandysautonomia. I have always had probs with UTIs and now i have a neurogenic bladder and have to self-catheterise intermittently. I haven't tried acupuncture because I am too afraid it will make things worse (how do you know if they are good at it or just think they are good at it?) but I have been working on improving my general health with diet. I figure, it certainly can't hurt to only put good food into me instead of the easy bad foods I was relying on. Better for the kids too!
Earlier on I found compression stockings helpful (there are some not-nanna-looking ones you can get... look for venosan brand)
http://www.venosan.com/
I am not a medical person so I don't have all the good advice the others will give about what is happening to you... but I don't think it is unreasonable to try anything in the hope of feeling better. Good on you for fighting is what I say!
And mothering twins! That would be exhausting for someone who's body was doing normal things, let alone yours! Respect!
Earlier on I found compression stockings helpful (there are some not-nanna-looking ones you can get... look for venosan brand)
http://www.venosan.com/
I am not a medical person so I don't have all the good advice the others will give about what is happening to you... but I don't think it is unreasonable to try anything in the hope of feeling better. Good on you for fighting is what I say!
And mothering twins! That would be exhausting for someone who's body was doing normal things, let alone yours! Respect!
So did since your cortisol was low when they checked for Addison's, did they do any further testing to confirm you have it and to try to learn if they could discover an underlying cause?
Have you had an echocardiogram to rule out congestive heart failure (re: puffy ankles)?
Jobst is a brand that I got after a cardiologist prescribed compression stockings for me- I had to get measured for them there at the HMO medical center. They aren't cheap and if you are going to invest and don't want it to turn out like my situation where I don't wear them, you may also want to look into something that makes it easier to don them.
Re: the frequent UTIs- are those confirmed by urine cultures? Because there are a couple of things that can mirror the symptoms of UTIs... endometriosis of the bladder and interstitial cystitis. I learned this because I had endometriosis on my bladder and then later, I learned I had interstitial cystitis.
I also have an in-law who gets frequent UTIs who has CMV which and I don't know if you might have it with the same trouble? Have you been tested for it? It's quite common and easy to catch evidently.
Have you had an echocardiogram to rule out congestive heart failure (re: puffy ankles)?
Jobst is a brand that I got after a cardiologist prescribed compression stockings for me- I had to get measured for them there at the HMO medical center. They aren't cheap and if you are going to invest and don't want it to turn out like my situation where I don't wear them, you may also want to look into something that makes it easier to don them.
Re: the frequent UTIs- are those confirmed by urine cultures? Because there are a couple of things that can mirror the symptoms of UTIs... endometriosis of the bladder and interstitial cystitis. I learned this because I had endometriosis on my bladder and then later, I learned I had interstitial cystitis.
I also have an in-law who gets frequent UTIs who has CMV which and I don't know if you might have it with the same trouble? Have you been tested for it? It's quite common and easy to catch evidently.
Hi LivingInHope - I had it wrong, my cortisol was low hence the thought it was Addison's. re: the compressions stockings - yikes, that would make me feel so old! I guess I could try them. Yeah, the puffy ankles worries me too. They did do extensive testing with kidneys, etc. which are fine (I had kidney surgery when little and a tiny bit of damage on one) however I have had recurrent urinary tract infections in the past year which just don't seem to go away. Pretty much constant.
I am 42, have 4 year-old twins (through IVF) and live in Canada. An internal medicine specialist diagnosed me. We live in a smaller town so that is about as specialist as we get here - not sure who else I'd see. He deals with most of the cardiac patients here.
I do believe all of this could have something to do with auto-immunity - I've had quite a few troubles due to this in the past, including trying to get pregnant (even with IVF, the only way this worked was when the doctor did an auto-immune 'treatment' along with the cycle which worked).
The problem is with auto-immune issues is that a) they are so hard to get diagnosed and b) the treatment seems pretty limited.
I am 42, have 4 year-old twins (through IVF) and live in Canada. An internal medicine specialist diagnosed me. We live in a smaller town so that is about as specialist as we get here - not sure who else I'd see. He deals with most of the cardiac patients here.
I do believe all of this could have something to do with auto-immunity - I've had quite a few troubles due to this in the past, including trying to get pregnant (even with IVF, the only way this worked was when the doctor did an auto-immune 'treatment' along with the cycle which worked).
The problem is with auto-immune issues is that a) they are so hard to get diagnosed and b) the treatment seems pretty limited.
Hi!
I know I'm not Sasha, but thought I'd let you know I.S.T. is inappropriate sinus tachycardia, which can happen whether active or at rest and P.O.T.S. is an acronym for postural orthostatic tachycardia syndrome, which has the heart beat increasing by 30+ beats per minute with the standing position.
And for myself, I was diagnosed through an internist and a cardiologist conferring with I.S.T. and through a special kind of cardiologist called an electrophysiologist with P.O.T.S. after a tilt table test that was positive for having it.
I know I'm not Sasha, but thought I'd let you know I.S.T. is inappropriate sinus tachycardia, which can happen whether active or at rest and P.O.T.S. is an acronym for postural orthostatic tachycardia syndrome, which has the heart beat increasing by 30+ beats per minute with the standing position.
And for myself, I was diagnosed through an internist and a cardiologist conferring with I.S.T. and through a special kind of cardiologist called an electrophysiologist with P.O.T.S. after a tilt table test that was positive for having it.
Hi Sasha,
I have been "sick" since last November, doctors can't seem to commit to any diagnosis and pawn me off on someone else always. My BP is 90/60 ( always has been), I had hyperthyroidism (goiters that were treated with radioactive iodine), my heart races every time I stand up, Raynaud's, exhaustion, muscle pain, and they initially thought I had Addison's.
I, too, won't take the drugs. I'm trying everything but drugs. Can you tell me what sort of specialist diagnosed you and, do you mind me asking what age you are and where in the country you live? I have had other things going on in the past like idiopathic anaphylaxis and autoimmune angioedema, but I can barely move since Novemebr and I lost my job. No doctors have ever even mentioned POTs or IST to me - I don't even know what they are!
Thank you!
I have been "sick" since last November, doctors can't seem to commit to any diagnosis and pawn me off on someone else always. My BP is 90/60 ( always has been), I had hyperthyroidism (goiters that were treated with radioactive iodine), my heart races every time I stand up, Raynaud's, exhaustion, muscle pain, and they initially thought I had Addison's.
I, too, won't take the drugs. I'm trying everything but drugs. Can you tell me what sort of specialist diagnosed you and, do you mind me asking what age you are and where in the country you live? I have had other things going on in the past like idiopathic anaphylaxis and autoimmune angioedema, but I can barely move since Novemebr and I lost my job. No doctors have ever even mentioned POTs or IST to me - I don't even know what they are!
Thank you!
Glad your hypothyroidism is being well managed, but I am concerned about your fluid retention in your ankles.... I don't know if that is from a salt overload or something else. I would suggest you ask your doctor about getting kidney function testing and an echocardiogram to make sure your kidneys are okay and your heart also.
Actually, high cortisol is associated with Cushing's whereas low cortisol is what one would expect in someone with Addison's. Did they check you for Cushing's?
The way to find out about your iron supplementation- if it is sufficient- is to get an iron panel, including ferritin, T.I.B.C. (total iron binding capacity), iron saturation percentage, and blood iron levels, etc.. I don't think it at all unreasonable to ask your doctor to get checked every three months as long as you are iron deficient to track your progress and make adjustments as necessary.
You may want to ask your cardiologist about the compression stockings- I would think with orthostatic intolerance at least while you were up and if you still have low blood pressure and tachy as you lay down at night, probably then too. I didn't do so well with the pair I bought and don't wear them. But others do and one talked about some kind of aide that helps one to don them easier.
Actually, high cortisol is associated with Cushing's whereas low cortisol is what one would expect in someone with Addison's. Did they check you for Cushing's?
The way to find out about your iron supplementation- if it is sufficient- is to get an iron panel, including ferritin, T.I.B.C. (total iron binding capacity), iron saturation percentage, and blood iron levels, etc.. I don't think it at all unreasonable to ask your doctor to get checked every three months as long as you are iron deficient to track your progress and make adjustments as necessary.
You may want to ask your cardiologist about the compression stockings- I would think with orthostatic intolerance at least while you were up and if you still have low blood pressure and tachy as you lay down at night, probably then too. I didn't do so well with the pair I bought and don't wear them. But others do and one talked about some kind of aide that helps one to don them easier.
Thank you so much for your response!
No, they didn't even mention the other medicines. My hypothyroidism does seem quite stable, so I don't think that is the issue. I have increased my salt intake (though I do forget to do this sometimes) and no, haven't tried compression stockings. Would I have to wear those all the time? I definitely do have an issue with my feet (and my hands) going purple - always have - and within the past year I have noticed a lot of puffiness in my ankles which I have never had. That bothers me.
I have been checked for diabetes and don't have that, and initially they thought I might have Addison's as my cortisol level was high but additional testing ruled that out.
I AM iron deficient (semi-vegetarian) - I do take supplements but maybe that is not enough?
I just wish all of this was clear-cut!
Sasha
No, they didn't even mention the other medicines. My hypothyroidism does seem quite stable, so I don't think that is the issue. I have increased my salt intake (though I do forget to do this sometimes) and no, haven't tried compression stockings. Would I have to wear those all the time? I definitely do have an issue with my feet (and my hands) going purple - always have - and within the past year I have noticed a lot of puffiness in my ankles which I have never had. That bothers me.
I have been checked for diabetes and don't have that, and initially they thought I might have Addison's as my cortisol level was high but additional testing ruled that out.
I AM iron deficient (semi-vegetarian) - I do take supplements but maybe that is not enough?
I just wish all of this was clear-cut!
Sasha
The chest pain can be scary and I imagine it was a relief to you to find out it wasn't a heart attack or blockage causing the pain! I know I was relieved to find out nothing was wrong with my heart!
The thought behind beta blockers seems to be if they can slow the heart rate, it might get the heart to work more effectively and actually raise blood pressure. But you are right in being concerned since your blood pressure is low and you don't want to drive it lower and be tired. They did not want to try these types of medication- Florinef or Midodrine on you? I tried both, but didn't do well with them myself. However, some find them helpful.
I have had acupuncture in the past for migraines and I thought it actually seemed to aggravate my P.O.T.S., so I'm not sure it would help.
a) Do you have the hypothyroidism being well-managed or are you finding trouble getting the thyroid balance right? If your thyroid is still sluggish, that sure wouldn't help the tiredness situation any!
b) Have you increased your salt intake? Have you tried wearing compression stockings?
c) I know some days I'm extremely thirsty with my own dysautonomia, but since that can also be a symptom of diabetes, have you gotten and HgA1c test to rule out diabetes mellitus?
d) Have they tested your cortisol level, etc. to try to rule out Addison's disease, which can cause low blood pressure?
e) Have the made sure you are not anemic or iron deficient, including ordering an iron panel on you? Iron deficiency, even when a CBC comes back normal can still contribute to symptoms of tiredness and increase tachycardia.
The thought behind beta blockers seems to be if they can slow the heart rate, it might get the heart to work more effectively and actually raise blood pressure. But you are right in being concerned since your blood pressure is low and you don't want to drive it lower and be tired. They did not want to try these types of medication- Florinef or Midodrine on you? I tried both, but didn't do well with them myself. However, some find them helpful.
I have had acupuncture in the past for migraines and I thought it actually seemed to aggravate my P.O.T.S., so I'm not sure it would help.
a) Do you have the hypothyroidism being well-managed or are you finding trouble getting the thyroid balance right? If your thyroid is still sluggish, that sure wouldn't help the tiredness situation any!
b) Have you increased your salt intake? Have you tried wearing compression stockings?
c) I know some days I'm extremely thirsty with my own dysautonomia, but since that can also be a symptom of diabetes, have you gotten and HgA1c test to rule out diabetes mellitus?
d) Have they tested your cortisol level, etc. to try to rule out Addison's disease, which can cause low blood pressure?
e) Have the made sure you are not anemic or iron deficient, including ordering an iron panel on you? Iron deficiency, even when a CBC comes back normal can still contribute to symptoms of tiredness and increase tachycardia.
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