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Possible Adrenal Insufficiency? Video of pupils..
My story is a long one, but I'll try to keep it short.
Starting on May 23rd I began suffering from daily panic attacks (when I've never had them before), severe dizziness/faintness when standing up (vision goes black for 3-10 seconds), extremely high heart rate (had a 48 hour holter monitor test done, no heart problems, just a heart rate that goes up to 165 bpm just when standing up/walking to kitchen which is not a long walk, it is normal when sitting down), excessive sweating (although it IS summer), thirst and urination. I also get headaches that last for a couple days at a time on the top of my head and the left side of my forehead (very rarely on the right side) and fluctuating pupils. My pupils fluctuate nearly all day long, but especially if there is bright light. I did a flashlight test which showed even more fluctuation.
Here is a link to a video of my pupils: http://www.youtube.com/watch?v=dIu1TI961XQ
I am female, 21 years old with asthma and overweight. I had just lost about 35 pounds (from working out and eating healthy) when this all started to happen, and now it is so bad that I can barely walk around my house and take care of my kids, let alone work out with the vigor that I previously had. I still eat healthy but am not losing weight. About 1 year ago I had twins and lost quite a bit of blood but have since recovered. (Not sure if this would help, just thought I should add it in just in case!)
My doctor thinks that I'm probably just "anxiety ridden" because I have twins but I am POSITIVE that is not the case. He is not taking me seriously and that is why I am here. I am currently taking 40 mg of Celexa and 50 mg beta-blocker atenolol and neither one helps my heart rate from speeding up. On top of that I am taking 250/50 advair (have been taking for 2 years) and albuterol as needed. Thyroid seems fine, B12 levels in normal range but on the low side so I am taking a supplement. I'm wondering if this could possibly be a problem with my adrenal glands and/or pituitary gland? I'm not looking for a diagnosis (but if you have one, I'd be glad to hear it!), I just want to know where to go from here. If you need any more information, I'd be glad to share it.
Thank you,
Kim
Starting on May 23rd I began suffering from daily panic attacks (when I've never had them before), severe dizziness/faintness when standing up (vision goes black for 3-10 seconds), extremely high heart rate (had a 48 hour holter monitor test done, no heart problems, just a heart rate that goes up to 165 bpm just when standing up/walking to kitchen which is not a long walk, it is normal when sitting down), excessive sweating (although it IS summer), thirst and urination. I also get headaches that last for a couple days at a time on the top of my head and the left side of my forehead (very rarely on the right side) and fluctuating pupils. My pupils fluctuate nearly all day long, but especially if there is bright light. I did a flashlight test which showed even more fluctuation.
Here is a link to a video of my pupils: http://www.youtube.com/watch?v=dIu1TI961XQ
I am female, 21 years old with asthma and overweight. I had just lost about 35 pounds (from working out and eating healthy) when this all started to happen, and now it is so bad that I can barely walk around my house and take care of my kids, let alone work out with the vigor that I previously had. I still eat healthy but am not losing weight. About 1 year ago I had twins and lost quite a bit of blood but have since recovered. (Not sure if this would help, just thought I should add it in just in case!)
My doctor thinks that I'm probably just "anxiety ridden" because I have twins but I am POSITIVE that is not the case. He is not taking me seriously and that is why I am here. I am currently taking 40 mg of Celexa and 50 mg beta-blocker atenolol and neither one helps my heart rate from speeding up. On top of that I am taking 250/50 advair (have been taking for 2 years) and albuterol as needed. Thyroid seems fine, B12 levels in normal range but on the low side so I am taking a supplement. I'm wondering if this could possibly be a problem with my adrenal glands and/or pituitary gland? I'm not looking for a diagnosis (but if you have one, I'd be glad to hear it!), I just want to know where to go from here. If you need any more information, I'd be glad to share it.
Thank you,
Kim
Thank you for this excellent advice. I'm going to try that tomorrow and I will also try calling multiple endocrinologists in a city about an hour north of where I live because it's quite a bit larger and there's a better possibility of seeing someone earlier than November there.
I've seriously considered going into the E.R. and refusing to leave until they test me but I'm not sure how much I would accomplish by doing that.
In any case, your post inspired me to push harder for an appointment and I will let you know how it goes. :)
I've seriously considered going into the E.R. and refusing to leave until they test me but I'm not sure how much I would accomplish by doing that.
In any case, your post inspired me to push harder for an appointment and I will let you know how it goes. :)
If I may offer a suggestion, many times the squeaky wheel gets the grease. The Lord answered my family's prayers for a sooner appt. with an endocrinologist for me. The earliest had been Nov. 2nd. I call and told them how I came close to fainting more than once, but no sooner appt. was found. I called them when an ER nurse said to call and tell about my visual disturbance, which an opthamologist later decided was an ocular migraine. Still seemingly no go. But on a later day, I was happily surprised when I was called with a much sooner appointment- this past Friday, the end of July instead of October!
So, you might try pestering them with your highest pulse numbers and how bad you are feeling, calling them often to check for cancellations. You might try your primary doctor for getting him/her to fax important pulse and other information to them and request that the appointment be made as soon as possible, on an urgent basis, given the gravity of your symptoms. You might suggest if you don't wake up in the morning, that they might live with regret from then on that they didn't do all they could to help you when they had the opportunity.
So, you might try pestering them with your highest pulse numbers and how bad you are feeling, calling them often to check for cancellations. You might try your primary doctor for getting him/her to fax important pulse and other information to them and request that the appointment be made as soon as possible, on an urgent basis, given the gravity of your symptoms. You might suggest if you don't wake up in the morning, that they might live with regret from then on that they didn't do all they could to help you when they had the opportunity.
It is very comforting to know that you are not alone and being in touch with people willing to advise is also spirit lifting.
My persistant symptoms started whilst I was carrying my third child, but when I gave birth to my 1st in 2002 I lost a lot of blood during a c-section and needed transfusions. I was told I was severly aneamic and they were suprised I was not on the floor, but I still felt this way after recieving blood - so if this is POTS I wonder if this is were it all started?
None of my family members have had adrenal tumours, I believe I am the first. After I had been in hospital a month they were convinced my problems were adrenal related and decided to do a MRI scan of them. Bingo...they find a tumour. But they don't believe it to be functioning so now I may be back to the beginning with the POTS, the next few months will see. I have a neurology app soon so I will know more then I suppose.
I understand. The dread I feel when I think this may be the way life is forever is petrifying. But we have to remain positive and we have to remain emotionally strong. I was practically bed ridden whilst in hospital, I never thought I would improve, I used to watch people and I had forgot what it felt like to be well...but I have improved, so be it not 100% but being able to care for my children means so much. Treatment for POTS, if you get a diagnosis will help you, so you need to be assessed for this as soon as you can to enable you to recieve help.
I have also read that for some people they seem to have a crash of severe symptoms as there POTS is triggered then they have symptoms to a lessor degree and they are able to function at a nearer normal level. I am not sure if this is accurate though and I hope that someone here with more experience will comment on this.
I found that gradually once I started having some strength to push myself I did improve. I was determined not to let this (whether it be POTS or something else) keep me down. There are simple things you can do to try and help if this is POTS such as increasing your water and sodium intake, some people see an improvement this way.
You know, I only went shopping for some fake tan for a night out and my world was turned upside down!!!! I felt i'd been hit by a bus!! it's put me off tanning forever x
My persistant symptoms started whilst I was carrying my third child, but when I gave birth to my 1st in 2002 I lost a lot of blood during a c-section and needed transfusions. I was told I was severly aneamic and they were suprised I was not on the floor, but I still felt this way after recieving blood - so if this is POTS I wonder if this is were it all started?
None of my family members have had adrenal tumours, I believe I am the first. After I had been in hospital a month they were convinced my problems were adrenal related and decided to do a MRI scan of them. Bingo...they find a tumour. But they don't believe it to be functioning so now I may be back to the beginning with the POTS, the next few months will see. I have a neurology app soon so I will know more then I suppose.
I understand. The dread I feel when I think this may be the way life is forever is petrifying. But we have to remain positive and we have to remain emotionally strong. I was practically bed ridden whilst in hospital, I never thought I would improve, I used to watch people and I had forgot what it felt like to be well...but I have improved, so be it not 100% but being able to care for my children means so much. Treatment for POTS, if you get a diagnosis will help you, so you need to be assessed for this as soon as you can to enable you to recieve help.
I have also read that for some people they seem to have a crash of severe symptoms as there POTS is triggered then they have symptoms to a lessor degree and they are able to function at a nearer normal level. I am not sure if this is accurate though and I hope that someone here with more experience will comment on this.
I found that gradually once I started having some strength to push myself I did improve. I was determined not to let this (whether it be POTS or something else) keep me down. There are simple things you can do to try and help if this is POTS such as increasing your water and sodium intake, some people see an improvement this way.
You know, I only went shopping for some fake tan for a night out and my world was turned upside down!!!! I felt i'd been hit by a bus!! it's put me off tanning forever x
In a weird way it's comforting to know that I'm not going through this alone. Did your symptoms start right after you had your last child? You said you have an adrenal tumor, does that run in your family? Did they discover it by chance or did they do tests specifically to find it?
I am very afraid of getting a diagnosis like POTS. Up until a few months ago I was active every day and really enjoying my life and now I feel like my life has been taken away from me. I truly don't know if I could live like this forever.
I am very afraid of getting a diagnosis like POTS. Up until a few months ago I was active every day and really enjoying my life and now I feel like my life has been taken away from me. I truly don't know if I could live like this forever.
I did read that about Celexa, however my symptoms started weeks before I was on any sort of medication besides the Albuterol and Advair. Because of those symptoms, my doctor put me on Celexa. When that didn't help with my fast heart rate (although it noticeably brought my anxiety down to a manageable level) he put me on beta-blockers to control it. The beta-blockers worked for the fast heart rate only for 2 weeks (still had dizziness when standing up) and now the fast heart rate is back with a vengeance.
My doctor told me his job was just to TREAT every ailment, not CURE it. So I feel kind of hopeless because it doesn't even seem like he wants to find out what's wrong with me.
He finally referred me to an endo but the endo is booked out until November, as is every other endocrinologist in my area. I don't feel like I can wait that long. I cry myself to sleep every night because I'm afraid I'm not going to wake up.
My doctor told me his job was just to TREAT every ailment, not CURE it. So I feel kind of hopeless because it doesn't even seem like he wants to find out what's wrong with me.
He finally referred me to an endo but the endo is booked out until November, as is every other endocrinologist in my area. I don't feel like I can wait that long. I cry myself to sleep every night because I'm afraid I'm not going to wake up.
To: Kim
IMPORTANT... I got this off yahoo about Celexa... note the last listing of serious side effects:
"Call your doctor at once if you have any of these serious side effects:
■seizure (convulsions);
■tremors, shivering, muscle stiffness or twitching;
■problems with balance or coordination; or
■agitation, confusion, sweating, fast heartbeat."
IMPORTANT... I got this off yahoo about Celexa... note the last listing of serious side effects:
"Call your doctor at once if you have any of these serious side effects:
■seizure (convulsions);
■tremors, shivering, muscle stiffness or twitching;
■problems with balance or coordination; or
■agitation, confusion, sweating, fast heartbeat."
I totally understand your fear. I to am pushing for another option than having a confirmed diagnosis of POTS especially as I have an adrenal tumour, but I have found a lot of advice and comfort from the dysautonomia community. I was in hosp for 7 weeks with severe symptoms, to the extent where I lost a lot of weight, could not tolerate being upright and was very weak. I thought I would never get home to my children (aged 1,2 and 7) I was devastated!! I am not on fludrocortisone tablets (these can increase blood volume and/or if you have episodes of low blood pressure increase it) and have improved greatly (although we are not sure whether this is from the meds or my body helping itself).
An alternative cause is being talked about in the form of Celiac disease. I was diagnosed as having this condition whilst in hospital and now have been told that this can manifest neurologically and there is more and more acceptance of this as evidence from research is growing. Have you ever been tested for this? It is worth ruling it out. I had a negative blood test but a positive endoscopy biopsy. I am now also following a strict gluten free diet, whether this has contributed to my feeling some what better I am unsure.
Also, if you look on the wikpedia website for their encyclopedia description of POTS it states that a diagnosis of many things should be ruled out before POTS is diagnosed and celiac is one of them.
I suppose I to am looking for something more ordinary than a POTS diagnosis. But we have to remember that many POTS sufferers respond well to treatment and hope we fall in that catagory. Where are you located? I am in the UK and there doesn't seem to be any POTS specialists here and that disheartens me more.
Please keep me informed of any updates and I will keep you informed of any further diagnosis with myself.
An alternative cause is being talked about in the form of Celiac disease. I was diagnosed as having this condition whilst in hospital and now have been told that this can manifest neurologically and there is more and more acceptance of this as evidence from research is growing. Have you ever been tested for this? It is worth ruling it out. I had a negative blood test but a positive endoscopy biopsy. I am now also following a strict gluten free diet, whether this has contributed to my feeling some what better I am unsure.
Also, if you look on the wikpedia website for their encyclopedia description of POTS it states that a diagnosis of many things should be ruled out before POTS is diagnosed and celiac is one of them.
I suppose I to am looking for something more ordinary than a POTS diagnosis. But we have to remember that many POTS sufferers respond well to treatment and hope we fall in that catagory. Where are you located? I am in the UK and there doesn't seem to be any POTS specialists here and that disheartens me more.
Please keep me informed of any updates and I will keep you informed of any further diagnosis with myself.
Thank you for pointing me in the direction of the dysautonomia dysfunction community.
I have done my research and ran into POTS quite a bit and am admittedly more than a little terrified to come to terms with the fact that that is what I could be struggling with. I've heard that it can set in after pregnancy though and it seems to account for my symptoms pretty well.
I've had this feeling that it could have something to do with my adrenal glands or maybe even the pituitary gland but my doctor isn't taking me seriously. This is also why I haven't had my hormone levels checked either. After a lot of pushing, I finally got a referral to see an endocrinologist but who knows how long it will take to get in to see him.
I've also looked at Addison's Disease but I don't have any weight loss which seems to be a main factor in that disease. So I guess you could say that I'm at a loss!
Thank you very much for replying!!
I have done my research and ran into POTS quite a bit and am admittedly more than a little terrified to come to terms with the fact that that is what I could be struggling with. I've heard that it can set in after pregnancy though and it seems to account for my symptoms pretty well.
I've had this feeling that it could have something to do with my adrenal glands or maybe even the pituitary gland but my doctor isn't taking me seriously. This is also why I haven't had my hormone levels checked either. After a lot of pushing, I finally got a referral to see an endocrinologist but who knows how long it will take to get in to see him.
I've also looked at Addison's Disease but I don't have any weight loss which seems to be a main factor in that disease. So I guess you could say that I'm at a loss!
Thank you very much for replying!!
Post your question in the dsyautonomia dysfunction community.
There is a condition called Postural Orthostatic Tachycardia Syndrome (POTS) that is characterized by an increase in heart rate when standing. It is a form of dysautonomia. I am suspected of having this condition or a Pheochromocytoma (I have a growth on the adrenal gland), they can both give similar symptoms.
POTS can be diagnosed by a tilt table test, patients have a heart beat increase of 30bpm or to 120bpm when going from a laying to standing position. I am new to all this so you are better reading some posts in the community I mentioned and see if any of it sounds familiar. There are many other conditions that can give these symptoms but POTS is rare and if you do have it it can go undiagnosed as so many medical professionals are unaware of it.
Many things can cause this including surgery, pregnancy, viral infections, blood loss amongst others. It can be a illness in itself or caused by an underlying problem.
Have you had any of your hormone levels checked? These symptoms can also be caused by adrenal conditions such as addisons disease.
There is a condition called Postural Orthostatic Tachycardia Syndrome (POTS) that is characterized by an increase in heart rate when standing. It is a form of dysautonomia. I am suspected of having this condition or a Pheochromocytoma (I have a growth on the adrenal gland), they can both give similar symptoms.
POTS can be diagnosed by a tilt table test, patients have a heart beat increase of 30bpm or to 120bpm when going from a laying to standing position. I am new to all this so you are better reading some posts in the community I mentioned and see if any of it sounds familiar. There are many other conditions that can give these symptoms but POTS is rare and if you do have it it can go undiagnosed as so many medical professionals are unaware of it.
Many things can cause this including surgery, pregnancy, viral infections, blood loss amongst others. It can be a illness in itself or caused by an underlying problem.
Have you had any of your hormone levels checked? These symptoms can also be caused by adrenal conditions such as addisons disease.
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