Aa
Any ideas on this illness?
My husband has been very ill for over 2 years. It began with anxiety like symptoms and an eye twitch. It gradually worsened. He has been diagnosed with Bleparospasm of both eyes. His ENT believes he has Meniere's Disease but he's very Atypical. Symptoms other than Blepharospasm are: Constant dizziness / lightheadedness, fatigue, a "buzzing" in his head (left side of head, and left eye is also worse than right), a "cockeyed" feeling, some muscle spasms. We've sought varying help and no one has been able to help (though it seems like they don't try very hard). Of course they have added depression/anxiety as they always do. He improves for periods of time but then becomes so exhausted and disoriented he sleeps most of the day. At his best he can function around the house but struggles with the dizziness and "head symtoms" at ALL times. He was an officer manager but has been unable to work for 2 years due to inability to look at a computer screen, or stay awake and alert. He is forgetful. The basic tests (MRI, basic bloodwork, etc) have shown NOTHING (except a vitamin D deficiency and slightly elevated albumin). I try to be creative, thinking of vitamin deficiences, etc, as this is not an obvious thing. They say for us to stop trying to link all the symptoms but why would an otherwise healthy 40 yr old man with a healthy history (except for high cholesterol) suddenly become incapacitated??? I refuse to give up and accept that this is his life. ANY IDEAS AT ALL, ANYTHING? ANYTHING SOUND FAMILIAR TO ANYONE? I'm open to ANY ideas to pursue. Thank You!
Oops I meant to say that "I am currently on 2,000 units of vitamin D." And it's Chromagen not, Chromagem. =) Do have him checked though because this type of anemia can also mean he is bleeding internally somewhere such as in colon cancer.
MrsJeff,
These symptoms sound so eerily similar to many of mine. I was just recently diagnosed with iron deficiency anemia. I had three CBCs before they diagnosed me. This is because unless they test your Ferritin levels, they can completely miss anemia. Ferritin is the extra iron stored for emergency situations or when you are burning extra energy. So sometimes until that storage has been used up the hematocrit and hemoglobin will not drop. Yes, anemia will cause tinnitus. I had both ringing and a loud, loud heartbeat, swooshing noises, dizziness, fatigue, twitches in my eyes especially, and restless leg syndrome is tied to Vitamin D deficiency. I also had restless leg. If I remember right, the two actually will often coexist because when one gets low it affects the other. I had a Vitamin D deficieny so low it can cause rickets in children and fractures in the elderly with no evidence of osteoporosis, so you can imagine my reaction when I finally found a doctor who cared. Vitamin D deficiency gave me severe arthritis, burning in the fingers, bilateral hip pain, etc., and I'm only 40 years old. Because doctors had put me off so many times, I started to think maybe I was nuts, and didn't myself realize how pale I had become. My family had not noticed either because you don't pale overnight. After being diagnosed, I started comparing my feet to my husband's and children's and could not believe the difference. My hands and feet were also very cold often and I was cold almost always. In fact, I was so cold that this summer seemed nice to me and I live where it gets 90-100 degrees. I enjoyed getting into the hot car. Both of those deficiencies will cause depression and anxiety. Another odd thing I noticed is that cherry angiomas seemed to increase four fold. I think there were about 40 to 60 that appeared within a one month period. And of course I was told this was age related but I knew it was too quick, and eventually I was right. I had to switch doctors until I found one who really listened and believed and did the tests that three other doctors did not do. They all did CBCs. They failed to do vitamin and ferritin tests and that was their downfall. Insist they check his vitamin levels, especially Vitamin D, Vitamin B12 and they must test his Ferritin levels. Do not self medicate with vitamins because these vitamins can be toxic if you don't need them, but when you are deficient they will require you to take more than the normal person takes on a daily basis. I am not currently on 2,000 units of Vitamin D per day and a product called Chromagem which has all of the above vitamins as well as folic acid. I really hope you find some help. I know the feeling of going to a doctor who wants to diagnose the quick fix and ignores something that might actually require further research on his part. All of these studies are medical mainstream and well-known. Do an internet search and you will see how serious some of these deficiencies can be. One more thing, the ENT also told me that I had classic sypmtoms of Meniere's. Maybe a coincidence maybe not. However, hearing and everything else was perfectly fine. I find it so hard to believe that our symptoms are so similar. Anemia does affect your ability to work, not only because of brain fatigue but because you generally just feel lazy. That is the only way to explain it. You feel lazy and like you have no motivation. I was beating myself up psychologically when it was not in my head. I really hope this helps you. It is so important that they test that Ferritin level. Insist on it, please, please. Even if he is low normal it can cause every one of his symptoms as they are considering changing the current recommended levels. Anything below 20ng is considered low and some people will have symptoms near that range, but 50ng is what they would like you to be.
These symptoms sound so eerily similar to many of mine. I was just recently diagnosed with iron deficiency anemia. I had three CBCs before they diagnosed me. This is because unless they test your Ferritin levels, they can completely miss anemia. Ferritin is the extra iron stored for emergency situations or when you are burning extra energy. So sometimes until that storage has been used up the hematocrit and hemoglobin will not drop. Yes, anemia will cause tinnitus. I had both ringing and a loud, loud heartbeat, swooshing noises, dizziness, fatigue, twitches in my eyes especially, and restless leg syndrome is tied to Vitamin D deficiency. I also had restless leg. If I remember right, the two actually will often coexist because when one gets low it affects the other. I had a Vitamin D deficieny so low it can cause rickets in children and fractures in the elderly with no evidence of osteoporosis, so you can imagine my reaction when I finally found a doctor who cared. Vitamin D deficiency gave me severe arthritis, burning in the fingers, bilateral hip pain, etc., and I'm only 40 years old. Because doctors had put me off so many times, I started to think maybe I was nuts, and didn't myself realize how pale I had become. My family had not noticed either because you don't pale overnight. After being diagnosed, I started comparing my feet to my husband's and children's and could not believe the difference. My hands and feet were also very cold often and I was cold almost always. In fact, I was so cold that this summer seemed nice to me and I live where it gets 90-100 degrees. I enjoyed getting into the hot car. Both of those deficiencies will cause depression and anxiety. Another odd thing I noticed is that cherry angiomas seemed to increase four fold. I think there were about 40 to 60 that appeared within a one month period. And of course I was told this was age related but I knew it was too quick, and eventually I was right. I had to switch doctors until I found one who really listened and believed and did the tests that three other doctors did not do. They all did CBCs. They failed to do vitamin and ferritin tests and that was their downfall. Insist they check his vitamin levels, especially Vitamin D, Vitamin B12 and they must test his Ferritin levels. Do not self medicate with vitamins because these vitamins can be toxic if you don't need them, but when you are deficient they will require you to take more than the normal person takes on a daily basis. I am not currently on 2,000 units of Vitamin D per day and a product called Chromagem which has all of the above vitamins as well as folic acid. I really hope you find some help. I know the feeling of going to a doctor who wants to diagnose the quick fix and ignores something that might actually require further research on his part. All of these studies are medical mainstream and well-known. Do an internet search and you will see how serious some of these deficiencies can be. One more thing, the ENT also told me that I had classic sypmtoms of Meniere's. Maybe a coincidence maybe not. However, hearing and everything else was perfectly fine. I find it so hard to believe that our symptoms are so similar. Anemia does affect your ability to work, not only because of brain fatigue but because you generally just feel lazy. That is the only way to explain it. You feel lazy and like you have no motivation. I was beating myself up psychologically when it was not in my head. I really hope this helps you. It is so important that they test that Ferritin level. Insist on it, please, please. Even if he is low normal it can cause every one of his symptoms as they are considering changing the current recommended levels. Anything below 20ng is considered low and some people will have symptoms near that range, but 50ng is what they would like you to be.
MEDICAL PROFESSIONAL
Hello,
MRI (magnetic resonance imaging) uses magnetic fields and radio waves to produce two-dimensional or three-dimensional images of the structures inside your body, such as your heart, brain or blood vessels. When this scanning method is applied to the blood vessels, it is also sometimes referred to as MRA (magnetic resonance angiography).It helps in diagnosis of aneurysms,atherosclerosis,carotid artery disease and narrowing of the arteries.
The sleeping difficulties that your husband is having may be due to restless leg syndrome or hypnogogic myoclonus.It's not known exactly what causes these symptoms, but they appear to be associated with anxiety and faint stimulus like noise. Sometimes restless leg syndrome can be caused by diabetes, iron deficiency anemia, Cigarette smoking, magnesium or Vit B12 deficiency.
You can take the help of sleep specialist for these symptoms.
Hope it helps.If you have any additional queries,then pls post us.
Take care and regards.
MRI (magnetic resonance imaging) uses magnetic fields and radio waves to produce two-dimensional or three-dimensional images of the structures inside your body, such as your heart, brain or blood vessels. When this scanning method is applied to the blood vessels, it is also sometimes referred to as MRA (magnetic resonance angiography).It helps in diagnosis of aneurysms,atherosclerosis,carotid artery disease and narrowing of the arteries.
The sleeping difficulties that your husband is having may be due to restless leg syndrome or hypnogogic myoclonus.It's not known exactly what causes these symptoms, but they appear to be associated with anxiety and faint stimulus like noise. Sometimes restless leg syndrome can be caused by diabetes, iron deficiency anemia, Cigarette smoking, magnesium or Vit B12 deficiency.
You can take the help of sleep specialist for these symptoms.
Hope it helps.If you have any additional queries,then pls post us.
Take care and regards.
My husband did have a Sleep Study done about a year and a half ago and they did find mild sleep apnea (he now wears a CPAP) and suspected a seizure during sleep but couldn't confirm this. He complains of his teeth hurting and he must wear a mouth guard at night as well. His body jerking is worse in a sleepy state or during sleep.
His Meniere's or Meniere's like illness includes hearing loss and dizziness but NO tinnitus and it is not episodic but rather constant to varying degrees. So he's atypical if this is it.
I'm not sure if he had an MRA, I'll have to ask him. Is this similar to an MRI?
Thanks for the input, it helps to discuss different options to pursue.
His Meniere's or Meniere's like illness includes hearing loss and dizziness but NO tinnitus and it is not episodic but rather constant to varying degrees. So he's atypical if this is it.
I'm not sure if he had an MRA, I'll have to ask him. Is this similar to an MRI?
Thanks for the input, it helps to discuss different options to pursue.
MEDICAL PROFESSIONAL
Hello,
Ménière's disease is a disorder of the inner ear that can affect hearing and balance. It is characterized by episodes of dizziness and tinnitus and progressive hearing loss, usually in one ear.Diagnosed by otolaryngeal examination coupled with audiometry.
Patients with cerebrovascular disease have partial or complete blockages in the arteries that supply the brain with blood. These blockages can cause a temporary loss of blood flow (called transient ischemic attack, or TIA for short), or permanent loss of blood flow (called stroke; also called cerebrovascular accident).This can lead to impaired blood flow through these arteries and so dizziness.TIA and stroke can be diagnosed by stress echocardiography and MRA(magnetic resonance imaging).
Cervical spondolysis and carotid sinus syndrome can also cause dizziness.Pls discuss these options with your doctor.
Hope it helps.
Take care and pls do keep us posted on how your husband is doing.
Ménière's disease is a disorder of the inner ear that can affect hearing and balance. It is characterized by episodes of dizziness and tinnitus and progressive hearing loss, usually in one ear.Diagnosed by otolaryngeal examination coupled with audiometry.
Patients with cerebrovascular disease have partial or complete blockages in the arteries that supply the brain with blood. These blockages can cause a temporary loss of blood flow (called transient ischemic attack, or TIA for short), or permanent loss of blood flow (called stroke; also called cerebrovascular accident).This can lead to impaired blood flow through these arteries and so dizziness.TIA and stroke can be diagnosed by stress echocardiography and MRA(magnetic resonance imaging).
Cervical spondolysis and carotid sinus syndrome can also cause dizziness.Pls discuss these options with your doctor.
Hope it helps.
Take care and pls do keep us posted on how your husband is doing.
It may be that his symptoms will not all trace to the same source, but if at least groups of them could be tied together it would be helpful. I had a friend who had the Meniere'stype symptoms many years ago. Surgery pretty much resolved her symptoms. What does the ENT say can be done if it is Meniere's?
You said he'd had an MRI - has he had an MRA of his head and neck to check the blood vessels?
Has he had an overnight sleep study in a sleep lab? I think he needs the help of a good sleep neurologist. I have sleep disorders that had been so long standing they caused my daytime sleepiness, cognitive impairment, even repetitive head jerking when I was awake, as the lines became blurred between sleep and wake.
If he were my husband, if these things have not been done, the sleep lab would be high priority, followed closely by an MRA of the head and neck.
You said he'd had an MRI - has he had an MRA of his head and neck to check the blood vessels?
Has he had an overnight sleep study in a sleep lab? I think he needs the help of a good sleep neurologist. I have sleep disorders that had been so long standing they caused my daytime sleepiness, cognitive impairment, even repetitive head jerking when I was awake, as the lines became blurred between sleep and wake.
If he were my husband, if these things have not been done, the sleep lab would be high priority, followed closely by an MRA of the head and neck.
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