Aa
So confused about symptoms but renewing my determination to get an answer!
Hi, This is my first post to this website and I'm sorry that it's so long:
I've been suffering with a myriad of disparate symptoms since '05. I had a sebaceous cyst that took two courses of antibiotics and drainage to get under control. A couple of weeks after that, I began having incidents of sudden, projectile vomiting that would come out of the blue. It would put me out of commission - I was so weak that (I couldn't even crawl to the bathroom) for about twelve hours each time and then I would be absolutlely fine as if nothing had happened. This lasted for about a month - one or two times a week. Colonoscopy was normal.
A couple of weeks after this situation, I started becoming so fatigued and so weak, it was hard for me to get through the day. I would alternate between palpatations and a "rushiy" feeling, dizziness, panic attacks and alternatively, feeling as though I'd turned to stone with weakness, depression, dizziness, leg pains and excruciating pain in the bottoms of my feet. I also had a hard time focusing and remembering things. I also suffered from chronic insomnia.
Apparently something happened to me because a couple of months later, I had developed Beau's lines (deep horizontal indentations) on both thumbnails.
Because, I'd been dx with Hashimoto's Thyroiditis, the doc put me on cortisone and a small amount of Armour (although except for antibodies, my thyroid levels are normal). Both were discontinued after a a couple of months. This all seemed to help but I had recurrent "bouts" and began having a very annoying abdominal bloating that came and went. Sometimes this would be accompanied by gastro issues (IBS?) and other times it seemed like edema. I began noticing that my body temperature was rarely above 96 - 97 and my blood pressure was always very low -sometimes under 100 (systolic) with a very high pulse (90-100+). Around this time, I began to eliminate wheat from my diet and it did seem to help quite a bit. I have since also eliminated lactose from my diet and increased my exercise when I can tolerate it. I was also treated with Diflucan for a systemic candida infection and that really helped a lot.
All this helps, but I still have the fatigue very badly and I can't seem tolerate a lot of anything. The bloating is recurrent and I still seem to have "flare ups" of all my symptoms very often. Because of the thyroid issues, I've been thinking endocrine all along, but I've recently been reading about dysfunctions of the autonomic nervous systems and I feel as though this may be my problem.
Here's my hx, dx and symptoms:
History/dx
Pilonidal cyst - age 19
After collapsing while shoveling snow in 1993, I was dx with Thyroiditis and Hyper-thyroidism. Treated with a beta blocker and aspirin. Retesting showed normal hormone levels. Discontinued treatment.
Menopause began at age 42 (fifteen years earlier than my mother or older sister).
Dx with Hashimoto's and several large nodules by needle aspiration in 2002 - normal hormone levels.
Lyme test in 2007 came up "borderline" positive but the follow up test was negative. I personally haven't ruled this out b/c I live in a Lyme dense area and I painted outdoors in the fields and forests for five years ending when I got sick in 2005. My husband has had it twice and our dogs have all been dx with Lyme. I wonder if I've had it for a while and now it's chronic.
2009 - Dx hypoglycemia
Dx orthostatic hypotension
macular cyst/hole
Family Hx:
Sister - died at 18 of congenital heart defect
Father - died at 47 of heart disease
mother - died at 82 of pancreatic cancer
sister age 64 - William's Syndrome
brother - age 68 - good health
Symptoms:
Heat intolerance - have felt faint and weak in places that are warm and can't tolerate being in the sun. I have had this all my life. I have never been comfortable in water if it's too warm (like a hot tub or hot shower), because I start to feel weak.
Fainting history - first incident of fainting was age two when I cut my toe. Have fainted on the subway, in restaurants that are too crowded/too warm. Have always gotten dizzy spells when standing suddenly or even if I turn my head too fast while driving. I have to lay down for blood draws or I will absolutely faint. I think I have tended to discount fainting as a symptom because it's been lifelong and I've just learned to avoid situations that bring it on.
Weakness attacks - My whole adult life I have had occasional "attacks" of feeling very weak and I have to lay down - sitting doesn't help. It's usually when I'm doing something physical or stressful. I get very hungry during these attacks, so I always thought it was hypoglycemia. My mother told me that my grandfather often had these same attacks. When I had the glucose tolerance test, thought, it wasn't the same at all - that just made me sleepy.
Fatigue. Sometimes it feels as though someone has "pulled my plug". I feel so weak and tired and there's no rallying from it. This happens especially after I eat something - I have actually stopped eating breakfast just to give myself a fighting chance on the day
Body temperature. My body temperature rarely gets higher than 96 or 97 degrees farenheit. I have read that this can affect the bodies digestive enzymes..
Heart - Occasional palpatations and breathlessness. I can a walk a mile one day and the next just walking from the bedroom to the kitchen makes my heart race. I had an incident last year where my heart felt like it was missing a beat at night when I was in bed. It woke me up a couple of times. I had a normal echo-cardiogram and even used a heart monitor one night without incident. After several weeks it just stopped happening.
Joints/Muscles- This seems to happen at the same time as the heart palps - My knee joints will hurt and the backs of my thighs will suddenly be painful esp when climbing stairs.
Digestion - I have bouts of constipation with bloating that seem to end in loose stools. It feels as though my insides are swollen. Sometimes it seems like I can relate this to wheat/dairy.
Urinary tract - I seem to retain urine. I can tell because I feel as though my abdomen in particular is swollen. I have learned to lay down for an hour or so and sure enough, I will have to get up to urinate several times and then I'll be fine.
All these symptoms seem to come in "attacks" . In other words, I'll have most or all of them at the same time followed by periods of feeling pretty good.
Despite all this, I lead a fairly active and happy life. I would really like some answers but since all these things are so varied and so vague, there doesn't seem to be a cohesive picture and therefore, no answers..
I would really appreciate any input or thoughts at all. I am determined that 2010 will be the year I get some kind of diagnosis and/or learn how to cope with this. Thank you. Patricia
I've been suffering with a myriad of disparate symptoms since '05. I had a sebaceous cyst that took two courses of antibiotics and drainage to get under control. A couple of weeks after that, I began having incidents of sudden, projectile vomiting that would come out of the blue. It would put me out of commission - I was so weak that (I couldn't even crawl to the bathroom) for about twelve hours each time and then I would be absolutlely fine as if nothing had happened. This lasted for about a month - one or two times a week. Colonoscopy was normal.
A couple of weeks after this situation, I started becoming so fatigued and so weak, it was hard for me to get through the day. I would alternate between palpatations and a "rushiy" feeling, dizziness, panic attacks and alternatively, feeling as though I'd turned to stone with weakness, depression, dizziness, leg pains and excruciating pain in the bottoms of my feet. I also had a hard time focusing and remembering things. I also suffered from chronic insomnia.
Apparently something happened to me because a couple of months later, I had developed Beau's lines (deep horizontal indentations) on both thumbnails.
Because, I'd been dx with Hashimoto's Thyroiditis, the doc put me on cortisone and a small amount of Armour (although except for antibodies, my thyroid levels are normal). Both were discontinued after a a couple of months. This all seemed to help but I had recurrent "bouts" and began having a very annoying abdominal bloating that came and went. Sometimes this would be accompanied by gastro issues (IBS?) and other times it seemed like edema. I began noticing that my body temperature was rarely above 96 - 97 and my blood pressure was always very low -sometimes under 100 (systolic) with a very high pulse (90-100+). Around this time, I began to eliminate wheat from my diet and it did seem to help quite a bit. I have since also eliminated lactose from my diet and increased my exercise when I can tolerate it. I was also treated with Diflucan for a systemic candida infection and that really helped a lot.
All this helps, but I still have the fatigue very badly and I can't seem tolerate a lot of anything. The bloating is recurrent and I still seem to have "flare ups" of all my symptoms very often. Because of the thyroid issues, I've been thinking endocrine all along, but I've recently been reading about dysfunctions of the autonomic nervous systems and I feel as though this may be my problem.
Here's my hx, dx and symptoms:
History/dx
Pilonidal cyst - age 19
After collapsing while shoveling snow in 1993, I was dx with Thyroiditis and Hyper-thyroidism. Treated with a beta blocker and aspirin. Retesting showed normal hormone levels. Discontinued treatment.
Menopause began at age 42 (fifteen years earlier than my mother or older sister).
Dx with Hashimoto's and several large nodules by needle aspiration in 2002 - normal hormone levels.
Lyme test in 2007 came up "borderline" positive but the follow up test was negative. I personally haven't ruled this out b/c I live in a Lyme dense area and I painted outdoors in the fields and forests for five years ending when I got sick in 2005. My husband has had it twice and our dogs have all been dx with Lyme. I wonder if I've had it for a while and now it's chronic.
2009 - Dx hypoglycemia
Dx orthostatic hypotension
macular cyst/hole
Family Hx:
Sister - died at 18 of congenital heart defect
Father - died at 47 of heart disease
mother - died at 82 of pancreatic cancer
sister age 64 - William's Syndrome
brother - age 68 - good health
Symptoms:
Heat intolerance - have felt faint and weak in places that are warm and can't tolerate being in the sun. I have had this all my life. I have never been comfortable in water if it's too warm (like a hot tub or hot shower), because I start to feel weak.
Fainting history - first incident of fainting was age two when I cut my toe. Have fainted on the subway, in restaurants that are too crowded/too warm. Have always gotten dizzy spells when standing suddenly or even if I turn my head too fast while driving. I have to lay down for blood draws or I will absolutely faint. I think I have tended to discount fainting as a symptom because it's been lifelong and I've just learned to avoid situations that bring it on.
Weakness attacks - My whole adult life I have had occasional "attacks" of feeling very weak and I have to lay down - sitting doesn't help. It's usually when I'm doing something physical or stressful. I get very hungry during these attacks, so I always thought it was hypoglycemia. My mother told me that my grandfather often had these same attacks. When I had the glucose tolerance test, thought, it wasn't the same at all - that just made me sleepy.
Fatigue. Sometimes it feels as though someone has "pulled my plug". I feel so weak and tired and there's no rallying from it. This happens especially after I eat something - I have actually stopped eating breakfast just to give myself a fighting chance on the day
Body temperature. My body temperature rarely gets higher than 96 or 97 degrees farenheit. I have read that this can affect the bodies digestive enzymes..
Heart - Occasional palpatations and breathlessness. I can a walk a mile one day and the next just walking from the bedroom to the kitchen makes my heart race. I had an incident last year where my heart felt like it was missing a beat at night when I was in bed. It woke me up a couple of times. I had a normal echo-cardiogram and even used a heart monitor one night without incident. After several weeks it just stopped happening.
Joints/Muscles- This seems to happen at the same time as the heart palps - My knee joints will hurt and the backs of my thighs will suddenly be painful esp when climbing stairs.
Digestion - I have bouts of constipation with bloating that seem to end in loose stools. It feels as though my insides are swollen. Sometimes it seems like I can relate this to wheat/dairy.
Urinary tract - I seem to retain urine. I can tell because I feel as though my abdomen in particular is swollen. I have learned to lay down for an hour or so and sure enough, I will have to get up to urinate several times and then I'll be fine.
All these symptoms seem to come in "attacks" . In other words, I'll have most or all of them at the same time followed by periods of feeling pretty good.
Despite all this, I lead a fairly active and happy life. I would really like some answers but since all these things are so varied and so vague, there doesn't seem to be a cohesive picture and therefore, no answers..
I would really appreciate any input or thoughts at all. I am determined that 2010 will be the year I get some kind of diagnosis and/or learn how to cope with this. Thank you. Patricia
Moon...given your history, the list of symptoms you provided, and the exposure and diagnoses within your household--
in additional to seeing a dysautonomia specialist--
I would suggest finding a lyme disease specialist. Lyme tests are about as accurate as flipping a coin and often times the more progressed the case the more likely for it to come up negative. These symptoms of yours that come and go ring all too familiar. The strange abdominal bloating, chronically low body temperature, IBS, UT issues, fatigue, heart, hypoglycemia........
I suggest re-visiting Hashimoto's and perhaps adrenal insufficiency as well...
why was your Hashimoto's treatment discontinued? Low levels of antibodies or not, it's thyroiditis. You definitely seem to have dysautonomic features as well.
Folks here have a great handle on dysautonomia Mds. If you need help finding a lyme specialist in your area, just let me know. I have or have had pretty much everything you mention, and then some, from neurological lyme disease.
A good integrative doctor, who takes his/her time can help get some of this under control. For diagnosis & treatment of the likes of dysautonomia and lyme--you have to seek out the few who know what they are doing. Good luck!
in additional to seeing a dysautonomia specialist--
I would suggest finding a lyme disease specialist. Lyme tests are about as accurate as flipping a coin and often times the more progressed the case the more likely for it to come up negative. These symptoms of yours that come and go ring all too familiar. The strange abdominal bloating, chronically low body temperature, IBS, UT issues, fatigue, heart, hypoglycemia........
I suggest re-visiting Hashimoto's and perhaps adrenal insufficiency as well...
why was your Hashimoto's treatment discontinued? Low levels of antibodies or not, it's thyroiditis. You definitely seem to have dysautonomic features as well.
Folks here have a great handle on dysautonomia Mds. If you need help finding a lyme specialist in your area, just let me know. I have or have had pretty much everything you mention, and then some, from neurological lyme disease.
A good integrative doctor, who takes his/her time can help get some of this under control. For diagnosis & treatment of the likes of dysautonomia and lyme--you have to seek out the few who know what they are doing. Good luck!
Thank you all for your recommendations and for taking the time to listen. I have a large glass of water in front of me right now and I plan to be vigilant about keeping it filled.
Sorry it has taken me a while to respond; that's what we get for having co-community leaders who have the same illness as the forum members ... sometimes sickness gets the better of us too! :-p
It is possible that your symptoms could be indicative of autonomic dysfunction. If I'm reading your profile and using google maps correctly, you're about a 2-3 hour drive (depending on traffic) from a hospital with a dedicated dysautonomia clinic. Actually, there is more than one dysautonomia clinic in your area! This is *extremely* fortunate for you, as there are very few of these in the entire country, and most patients do not have such easy access to knowledgeable autonomic specialists. If I were you, I would definitely take advantage of this if you want to pursue ruling in/out a dysautonomia diagnosis.
Here you will find the links to the websites for the major hospital dysautonomia clinics in the US, including the ones near you. You may want to take a close look at their respective websites or call and talk with them more in depth to decide which sounds like a better fit for you personally, since you have a choice:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
To keep things simple on the phone, I would stay focused on the most clearly autonomic symptoms when asking for a diagnostic evaluation at their autonomic clinic: syncope, orthostatic hypotension, palpitations, dizziness, and fatigue. You might also mention that you have a history of autoimmune, as this can often be related to autonomic dysfunction. You will need to find out if you they require a referral, and you will probably need to ask the same of your insurance company to make sure that your insurer will pay for the diagnostic evaluation.
Keep us updated, and please feel free to continue posting any questions that you have!
It is possible that your symptoms could be indicative of autonomic dysfunction. If I'm reading your profile and using google maps correctly, you're about a 2-3 hour drive (depending on traffic) from a hospital with a dedicated dysautonomia clinic. Actually, there is more than one dysautonomia clinic in your area! This is *extremely* fortunate for you, as there are very few of these in the entire country, and most patients do not have such easy access to knowledgeable autonomic specialists. If I were you, I would definitely take advantage of this if you want to pursue ruling in/out a dysautonomia diagnosis.
Here you will find the links to the websites for the major hospital dysautonomia clinics in the US, including the ones near you. You may want to take a close look at their respective websites or call and talk with them more in depth to decide which sounds like a better fit for you personally, since you have a choice:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
To keep things simple on the phone, I would stay focused on the most clearly autonomic symptoms when asking for a diagnostic evaluation at their autonomic clinic: syncope, orthostatic hypotension, palpitations, dizziness, and fatigue. You might also mention that you have a history of autoimmune, as this can often be related to autonomic dysfunction. You will need to find out if you they require a referral, and you will probably need to ask the same of your insurance company to make sure that your insurer will pay for the diagnostic evaluation.
Keep us updated, and please feel free to continue posting any questions that you have!
Hi, I am sorry to hear you have been suffering and experiencing so many symptoms. The symptoms you give can possibly be caused by dysautonomia. They are familiar to us all here. But, before a dx can be officially made all other causes have to be ruled out. Their are several conditions that can cause similiar symptoms or can actually cause dysautonomia itself. The form I am familiar with is POTS (postural orthostatic tachycardia syndrome), this is dx through a Tilt Table Test (TTT) and is defined by a heart rate increase of 30bpm or to 120 bpm on standing from a laying position (this is seen on TTT). You can do a 'rough' test yourself just to see what your heart rate is doing. Lay down for approx 15-20 mins and take note of your hr. Stand up and then take note of your hr every few minutes for approx 20 mins. If you see a rise as previously mentioned then it is maybe possible that POTS may be present. If you are a fainter please have someone with you incase you go!! It would be wise to ask your doctor to refer you for a TTT, this would either rule in or out this condition. Have a look at the info on the link below it is very informative:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
Have you had your cortisol levels checked to see if they are low. If they were this could possibly indicate Addisons disease, which symptoms are similar to POTS. Below is a link listing some causes:
http://www.dinet.org/what_causes_pots.htm
As contessabrooke has said above, water and lots of it helps, as well as increasing your daily salt intake. Gatorade is a very good drink that POTS sufferers find helps too. Compression stockings are also another helpful item. They help with venous return.
What tests have been done for you? and what conditions have they ruled out? It is hard when symptoms come and go and are not specific to one condition. it is so frustrating!!
Below is a link to the forum health pages, you will find these helpful:
http://www.medhelp.org/health_pages/Neurological-Disorders/list?cid=196
The community leaders on here are excellent and will reply to your post when they can. Feel free to ask any questions and if any of us here can help you we will be only to happy to.
Kind Regards
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
Have you had your cortisol levels checked to see if they are low. If they were this could possibly indicate Addisons disease, which symptoms are similar to POTS. Below is a link listing some causes:
http://www.dinet.org/what_causes_pots.htm
As contessabrooke has said above, water and lots of it helps, as well as increasing your daily salt intake. Gatorade is a very good drink that POTS sufferers find helps too. Compression stockings are also another helpful item. They help with venous return.
What tests have been done for you? and what conditions have they ruled out? It is hard when symptoms come and go and are not specific to one condition. it is so frustrating!!
Below is a link to the forum health pages, you will find these helpful:
http://www.medhelp.org/health_pages/Neurological-Disorders/list?cid=196
The community leaders on here are excellent and will reply to your post when they can. Feel free to ask any questions and if any of us here can help you we will be only to happy to.
Kind Regards
I'm so sorry to hear of all your troubles. It sounds like to me that many of your symptoms do fit dysautonomia. I also have the low blood pressure, heart beat fluctuations, fainting, the dizziness, the fatigue, the brain fog, and the digestive problems. It is like food goes through my stomach, but the rest of the system just stops unless I take medicine to keep things moving. In case you haven't tried it or have thought it wouldn't help, drinking water constantly does help. At first I thought that was too simple, so I just didn't really do it, but I can definitely tell a difference when I do not drink water all day - like a gallon and a half maybe two - a day. (I don't know if you are interested in my doctor's treatment of my symptoms or not, but here it goes: increased fluids, salt tablets as well as salty foods, beta blocker, midodrine to raise blood pressure, and "something to battle the fatigue. " I found out when I picked it up at the pharm. that it is generic Wellbutrin - an antidepressant. After reading other posts, I discovered that doctors often use antidepressants to help dysautonomia patients.) I will say that my blood pressure has gone up some. I have it checked weekly at my church, and the top number has been almost to 100 or a little over the last few weeks. My doctor said that 110 over 70 would be a goal. I am not there yet but approaching.
I can also identify with the randomness of the symptoms. One day I am fine and normal - the next I may be so fatigued that I barely make it through my day, and some days I really want to stay in bed.
Again, I am no real help, but I wanted you to know that someone read what you wrote and can identify with some of it.
What state are you in? Do you know of a dysautonomia or mitrovalve specialist? (I am in AL.)
I can also identify with the randomness of the symptoms. One day I am fine and normal - the next I may be so fatigued that I barely make it through my day, and some days I really want to stay in bed.
Again, I am no real help, but I wanted you to know that someone read what you wrote and can identify with some of it.
What state are you in? Do you know of a dysautonomia or mitrovalve specialist? (I am in AL.)
Some of your symptoms are similiar to mine and your thyroid is autoimmune. I have been fainting and vomiting since getting out of the bathtub since I was 8 or 9. My parents thought I had a brain tumor. I am 43 now. Now sometimes it feels like I will faint-but I just go lay flat down on my bed. My heart will start pounding. If I am going to be affected by this "dysautonomia" it usually starts in my digestive system. I have the same symptoms as you. I have been having them for about a week and half now and am having trouble eating. I have the body temp. thing. Mine is always very low. Sometimes I am freezing my butt off. I have had the fatigue- especially this time. Have you seen a neurologist? Were you treated immediately for the Lyme? If you had it? Back when I was in the hospital 2 half years ago they told me it was nervous system dysfunction. I was put on meds and got better. I should have been seeing a neurologist regularly- but wasn't. I stayed on the Neurontin for nerve pain. I went off one of the meds in June (Cymbalta)- I had an H1N1 shot 3 weeks ago and here I am in the same boat. It may not have been the shot. I have alot of autoimmune in my family. It is like my autoimmune is attacking my nervous system. I have an appt. Friday with a neuro. I am no expert- but there are people on here who are- they are really sick right now. I am sure they will reply. Shelley
Have an Answer?
You are reading content posted in the Autonomic Dysfunction Community
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
