Does Anyone Else Experience This?

[rach73]

Hi,

Just seeking some reassurance really as this hasn't really happened to me before.

Two days ago I woke up with ptosis, right eye completely shut - that's not unusual for me. I didn't feel too good so I went down stairs to get a coffee. All of a sudden I had a real feeling of urgency for a BM. So I started back up the stairs, as I was climbing them I was aware that it was becoming really dark. Initially I thought it was due to the ptosis as this distorts my vision. As I got up to the top of the stairs it was getting darker and darker.

When I got to the bathroom and put the light on the room didn't light up. I was now terrified I was going to faint and lose control of my bodily functons. I managed to get to the toilet and sat with my head between my knees. Over the space of the next 5 mins the room resumed its normal brightness. I felt ok again and everything just passed. It left me a bit scared though as there was no real warning, nothing felt any different than any other day, other than everything going black.

I have never experienced this before, normal near faints for me involve me dropping to my knees, losing my vision. Usually feeling very dizzy seconds before hand. Ive never had it come on like this.

Has anyone else experienced it like this?

Sorry if this has been covered before, and sorry I keep asking so many questions.

Rach

[lieze]

That sounded very scary.

I'm glad you are okay.

[rach73]

Thanks Leize,

It was scary and Ive been mulling over it for a couple of days.

[juliegee]

Hi Rach-

I'm probably reaching here, but I think it's worth mentioning. During anaphylaxis, your eyelid often swells shut and you have an uncontrollable urge to have a bowel movement. When I was dealing with repeated incidents of this, my vision often dimmed & I felt like I would lose consciousness. I plugged your symptoms into an on-line symptom checker "Wrong Diagnosis" and anaphylaxis did come up as a possible cause.

I know nothing of your symptoms or history, but some of us have overly reactive mast cells (Mast Cell Activation Disorder/MCAD) that causes our autonomic & other symptoms. Your histamine is highest in the AM. That's when I used to have daily episodes of anaphylaxis upon waking. I'm probably totally out to lunch in your case, but thought I'd throw the idea out there in case .

I also had ONE incident of total inexplicable blackness- not during anaphylaxis. I was standing (setting the table) & was suddenly unable to see. Within a few seconds, I could. Coincidentally, I was seeing my optometrist that day for a check. He agreed that it was weird and we would wait to see if it happened again. It never did. I have fainted a few times w/o warning. I wonder if that was about to happen & didn't...although I felt perfectly fine at the time.

Your incident sounds VERY scary. At the very least, you should see your PCP and check it out. Sorry

Hugs-

Julie

[persephone]

Drops in bp do this to my vision too. Also, migraine can do this- with the ptosis do you also get a headache?

[rach73]

Hi

Thanks for your replies, it is certainly food for thought.

My ptosis came on in January 2007 out of the blue, initially it was diagnosed as bells palsy. But it doesn't fit the text book description of bells as my lower lid doesn't droop it actually rises and my pupil doesn't sit in the correct position when I have ptosis it drifts out to the side (towards my ear). I don't suffer with headaches when I have ptosis, although if the ptosis is prolonged it will give me a muscular pain in my forehead as the whole right side of my face droops including my eyebrow and mouth. The eyelid isn't swollen, its just discoloured like a very slight black eye. I have had numerous MRI's and CT scans all are negative.

I have had SFEMG's and Emgs and none have found any issue with the signals (sorry I just mean to say tests were negative). The ptosis is relieved by an ice pack applied, eye will return to normal after 30secs of ice pack being applied, but will only stay that way for 30sec. Mestinon also works. Saying that the drs believe that I do not have myasthenia gravis. All blood tests are negative.

When I have ptosis my vision is very distorted, I have double vision and problems with depth perception. But I have never before had an issue with everything going black like it did Tuesday.

I have definately become more allergic since becoming ill. On a couple of occasions now after taking new drugs my face and mouth have swollen and become red and blotchy. I used to be able to take anything and suffer no reaction. It can also occur when I have had no new drugs and food and for no apparent reason. My whole face will become very red and itchy and only antihistamines will relieve it.

I do have migraines but they are few and far between. The last one I had was in January 2009.

I now get headaches when my BP drops and my vision greys out.

Its all very bizarre, but I thank all of you who have taken the time to answer my post. I really appreciate it.

Rach

[hensor]

Hi,

I frequently have everything go black, but don't faint. It has happened for as long as I remember, often after standing up. And I thought it was completely normal I have almost certainly always had a level of PoTS due to my also undiagnosed EDS. It was like parts of my brain fainted - like the eye-controlling-bit and the body-awareness bit but not other parts of me. I find it fascinating, but as I said it is normal for me so not scary. Although when it happened when I was stood at the top of the stairs it was a little disconcerting!

I have actually never fainted in my life. The 'blacking vision' appears to be my 'not-quite faint'. Doesn't mean it is for you though. Hope you find an answer to put your mind at rest.

Good luck

Hannah

[juliegee]

Hi

Thanks for your replies, it is certainly food for thought.

My ptosis came on in January 2007 out of the blue, initially it was diagnosed as bells palsy. But it doesn't fit the text book description of bells as my lower lid doesn't droop it actually rises and my pupil doesn't sit in the correct position when I have ptosis it drifts out to the side (towards my ear). I don't suffer with headaches when I have ptosis, although if the ptosis is prolonged it will give me a muscular pain in my forehead as the whole right side of my face droops including my eyebrow and mouth. The eyelid isn't swollen, its just discoloured like a very slight black eye. I have had numerous MRI's and CT scans all are negative.

I have had SFEMG's and Emgs and none have found any issue with the signals (sorry I just mean to say tests were negative). The ptosis is relieved by an ice pack applied, eye will return to normal after 30secs of ice pack being applied, but will only stay that way for 30sec. Mestinon also works. Saying that the drs believe that I do not have myasthenia gravis. All blood tests are negative.

When I have ptosis my vision is very distorted, I have double vision and problems with depth perception. But I have never before had an issue with everything going black like it did Tuesday.

I have definately become more allergic since becoming ill. On a couple of occasions now after taking new drugs my face and mouth have swollen and become red and blotchy. I used to be able to take anything and suffer no reaction. It can also occur when I have had no new drugs and food and for no apparent reason. My whole face will become very red and itchy and only antihistamines will relieve it.

I do have migraines but they are few and far between. The last one I had was in January 2009.

I now get headaches when my BP drops and my vision greys out.

Its all very bizarre, but I thank all of you who have taken the time to answer my post. I really appreciate it.

Rach

Hi Rach-

I have a few thoughts. There was recently an episode of" House", in which the patient had similar symptoms with one side of his face drooping. A forum member named Steve recently posted this link as to the underlying medical story behind the episode:

"Wow! I wonder if the episode was inspired by this article: http://www.nytimes.com/2008/06/15/magazine...sis-t.html?_r=1. Lisa Sanders, who wrote it, is supposed to be the medical adviser for the show."

Also, you really should look into mast Cell activation Disorder/MCAD with the symptoms you are describing. It was a major revelation to me to learn that my overly active mast cells were partially behind my weird autonomic & other symptoms. Check out The Mastocytosis Society:

www.tmsforacure.org

You can learn more about symptoms & see if you think it fits you. Treating it isn't a cure, but t did make a huge improvement in my stability. As a child/teen, I regularly awoke with one eye swollen shut and covered in bug bites. My doctors always said, "Oh, it's just a spider bite- nothing to worry about." In retrospect, I think I've been having anaphylactic symptoms all of my life. Like you, there is often no trigger and I'm officially allergic to NOTHING.

You may have more than one thing going on. Keep searching for answers. THAT was not normal & requires an explanation. Let us know what you find out.

Hugs-

Julie

[rach73]

Hi

Thank you again for your replies......even more stuff to think about.

I have visited the Mastocytosis society site and it was very interesting as I see MSG can be a trigger. I thought a while ago I may have an issue with this as after a chinese takeaway....yep you guessed it really flushed red itchy face and neck. It only happened the once and I have eaten chinese since and its not happened again so it has really confused me. It tends to be if I have a reaction I have a bright red itchy face, with blotches going down my neck. Very strange, but the information on the site was very interesting, as it covers a lot of the symptoms I have.

Unfortunately I couldn't get up the link to the article on the new york times, but I will have a hunt around and see if I can find it.

Like you Julie Im officially allergic to nothing, other than soduim valporate (anti convulsant) face swelled up as did the inside of my mouth, red blotchy again. And augementin (antibiotic) face swelled up, red and blotchy face. I have had penicillen since and had no reaction, but I certainly wont be trying augementin again. These are on my health records but Ive had no formal testing, its just anaecdotal evidence.

I do believe that there is more than one thing going on. I do have problems with my BP dropping especially after eating. My heart rate goes mental as soon as I stand up and try and do anything.

Ive had a few episodes of fainting in my life, one after dental treatment root canal work ten injections of lidnocaine (spelt wrong), in biology class disecting a pigs head (!) and when I had salmonella. These were all total lights out episodes no warning. Most of the time I have near faints and other people have realised I was going to faint and got me sat down and head between knees! Or I realise the danger signs and lay down. So this episode on Tuesday was not the norm for me.

I had a friend round yesterday who is training to be a dr and she was amazed at my BP readings and the fact that just a draft will make my hands go blue. She can't believe that no one will take me seriously.

Im in a difficult place at the moment my hospital consultant has dropped me as theres nothing wrong with me and my GP believes that only people with MS or Parkinsons get autonomic dysfunction. So its a bit of a battle but I will get through this.

This forum is my life line at present and daily I go through the previous posts and realise that Im not on my own.

Thanks

Rach

[juliegee]

Hi Rach-

Yeah, I had trouble accessing the article today too. I was able to copy it for you below. It is entitled "Diagnosis: Strange Spells" (Looks Like a Stroke, but it Isn't) by Lisa Sanders, M.D. This article originally appeared in the New York Times on June 15th of 2008. Dr. Sanders is also a writer for "House."

The boy was sitting in his 10th-grade math class at a high school in Atlanta when he had his first attack. He does not remember what happened, but his classmates noticed that he seemed to be in some sort of trance. He stared straight ahead, eyes unfocused. His lips moved, but no words came out — just a few jumbled syllables. His face looked strangely lopsided.

As the school nurse hurried into the classroom, her first thought was that — as unlikely as it seemed — this 15-year-old boy was having a stroke. But as she examined the boy, he began to improve. The color seeped back into his face, and the asymmetry disappeared. His pulse and blood pressure were normal. By the time the boy’s mother got to the school, he was back to his usual self.

His mother took him home, but she was worried. Her son had always been healthy. Certainly he’d never had anything like this happen before. At an event that night she described the strange symptoms to some friends. A man she didn’t know, sitting nearby, leaned forward. “Your son could have had a stroke,” he announced to the group of women. He apologized for eavesdropping but said something similar had happened to the teenage son of a friend. That boy had ended up completely paralyzed on one side of his body before they figured out what was going on.

When she got home that night, the now-terrified mother called Dr. Norman Harbaugh, her son’s doctor. “Did my son have a stroke?” she asked after describing the incident. Maybe, he said. If he was all right now, they should come to his office first thing in the morning. If anything else happened, they should go directly to the emergency room.

Harbaugh had been their pediatrician since the boy was 3. The mother was confident that he would know what this was. But the next day the doctor had no answers, only worries. Although the boy’s exam was completely normal, Harbaugh was concerned that this might not have been a stroke but a T.I.A. — a transient ischemic attack — the start of a stroke that somehow repairs itself. If it happened again, the boy might not be so lucky. He sent the boy to a neurologist and a cardiologist that morning. They found no risks for a stroke or evidence that he’d had one.

2. Investigation

Let’s watch and wait, Harbaugh advised. Maybe this was just a fluke. And for six months nothing happened. Then in July, the boy had a second attack, and in September, a third. With each attack, the boy was lightheaded and dazed, and there was a new symptom — in addition to the facial droop, his right hand and sometimes his right leg would shake. He was taken to the emergency room each time, but when he arrived, the symptoms were gone. Harbaugh sent him to another neurologist, another cardiologist, a nephrologist, a gastroenterologist. Dozens of blood tests were done. An echocardiogram of his heart was normal. The EEG was normal. By every measure, the boy seemed fine.

And yet over the course of that fall, the attacks became more frequent. Once a week, sometimes twice, his mother would get a call from school saying that her son was being sent to the hospital. One neurologist thought these might be seizures and started the teenager on an antiseizure medication. But the attacks kept coming.

Harbaugh was stumped and frustrated, especially after the boy had spent a week in the hospital and was discharged — still without a diagnosis. At that point, Harbaugh mentioned to the family that perhaps they might need to find experts outside Atlanta. After much discussion, Harbaugh referred the boy to the Diagnostic Center at the Children’s Hospital of Philadelphia, which specializes in diagnosing baffling illnesses in children. Harbaugh said he thought it seemed extreme to send this family from suburban Atlanta to a group of doctors in Philadelphia. Extreme but appealing. Coming at it with fresh eyes, a different perspective, these doctors might be able to find the answer.

And so, late that fall, the patient and his mother headed to the Children’s Hospital of Philadelphia. They trooped from specialist’s office to specialist’s office, carrying the thick files of notes and tests that made up the boy’s medical history. On their fourth and last day there, the boy and his mother went to see Dr. Rebecca Ichord, a young pediatric neurologist with a specialty in childhood stroke. Ichord greeted them in the waiting room. She was soft-spoken, with a serious but kind face. She sat down with mother and son and went through his thick chart — page by page — asking about each episode. Initially, Ichord, like the doctors before her, thought these “spells,” as the boy called them, sounded like T.I.A.’s — ministrokes. But given the extensive work-up that had been done, it seemed clear that this had been ruled out. So what else could this be?

As Ichord went through each of the attacks with the teenager and his mother, she began to notice a pattern. “Were you always sitting down when these spells came on?” she asked. The patient thought for a moment. Yes, at the time of each of these episodes he had been sitting for a long time. They never occurred when he was active. It was the answer she was hoping for. “I think you have something called postural orthostatic tachycardia syndrome,” she told the boy. This is a disorder that has only recently been described, but one she had seen a number of times during her years in practice. POTS, as it’s called, is seen mostly in adolescents and is characterized by lightheadedness and confusion, usually upon standing up. Normally when you’re sitting, blood pools in the legs. The blood vessels there constrict to help the blood return to the heart and stay in circulation. In patients with POTS, the vessels aren’t constricting properly, and so too much blood stays in the legs, causing a decrease in the amount in circulation. An inadequate supply of blood to the brain causes the lightheadedness and confusion.

But what about these strokelike symptoms, the mother asked. That wasn’t classic for POTS, but Ichord had seen it before too. She said she thought that in these patients the inadequate supply of blood triggered sensitive regions in the brain to overreact and cause these strange localized symptoms. And these symptoms, like the rest of them, got better when the patient lay down.

If you have a solved case to share with Dr. Sanders, you can e-mail her at lisa.sandersmd@gmail.com. She is unable to respond to all e-mail messages.

3. Resolution

A simple test could help her determine if her hunch was right. She had the lanky youth lie down on the examining table. She checked his pulse and his blood pressure. Both were normal. Then she had him sit up and measured his pulse and blood pressure again. Normally blood pressure doesn’t change much and heart rate increases slightly as the body tries to get all the blood from the lower body, where it is pooled, to the rest of the body, which now needs more blood. In this patient, though his blood pressure remained normal, his heart began to race as his body tried to force the blood from his legs all the way up to his brain. Based on this test, Ichord thought it was quite likely that the teenager had POTS. She ordered a study, which confirmed her diagnosis.

POTS is often seen following a growth spurt. The thinking is that the nerves that tell the blood vessels to constrict haven’t kept up with the rest of the body. Her patient had grown six inches over the last two years. Adolescents often grow out of this disease. Until then it is treated with a drug that constricts the blood vessels and salt tablets that increase the amount of fluid in the body. The boy was started on this regimen, and two years later, he is doing well.

“What’s amazing to me,” the patient told me recently, “is that I went to dozens of doctors, had hundreds of tests, had gallons of blood taken, and Dr. Ichord made this diagnosis with just one question and a blood-pressure cuff. I couldn’t believe it.” The difference was that, unlike the other doctors who had seen this patient, Ichord knew what she was looking for.

But what about these strokelike symptoms, the mother asked. That wasn’t classic for POTS, but Ichord had seen it before too. She said she thought that in these patients the inadequate supply of blood triggered sensitive regions in the brain to overreact and cause these strange localized symptoms. And these symptoms, like the rest of them, got better when the patient lay down.

Sounds like the drooping face is an unusual presentation of POTS. I would definitely show this article to your doc. You also need to look further into MCAD. Doing a google image search, I saw a picture of a patient with anaphylaxis. Her eye was swollen shut just like mine used to be. That's what had me worried for you. MCAD is a cause of POTS. Please keep looking into it.

Hugs-

Julie

[juliegee]

Forgive the double post- impatient keyboarding :-)

[poppetkazutaka]

I haven't gone completely out, but I notice sometimes I have fading, and I wonder why the lights are dimmer than they're supposed to be. It's usually later in the day when I'm tired, as if my body's trying to tell me it's time to shut down. Like a computer monitor fading out. I try to open my eyes wider, thinking I can let more light in like an ISO filter on a camera, but it doesn't help.

So don't worry about it, I think it is part and parcel. :3

EDIT: I should mention I have congenital ptosis (I was born with my left eye lazy) and when I'm tired, it gets worse. :3

[rach73]

Hi Julie

Thank you so much for posting that, its very very interesting. I will certainly be printing it off for my GP.

My ptosis normally comes on when I am sitting down, but I can also wake up with it. However my blood pressure tanks when I lay down. Even though I actually feel better laying down.

The other weird thing is my ptosis will sometime resolve if I lay down for an hour and just completely rest. I quite often feel disorientated when I have ptosis but I can still function. All yesterdays posts were done with ptosis, but I felt absolutely terrible. My speech can also become slurred.

It would explain why mestinon appears to resolve my ptosis as it would be levelling off my blood pressure. So thank you for that.

Poppet K - thank you for your reply. I developed ptosis 3 years ago up until then everything was pretty much normal. My eye doesn't just droop it closes leaving a very small gap, but not enough for me to have any useful vision from it.

Thanks so much for your replies.

Hugs

Rach

[gertie]

Rach, Did you sweat at any time? Did you take your BP at any time to see if it was normal? I have vasovagal syncope & often pass out due to to BP falling when having a BM. Not every time, but often enough to keep me dreading having to use the potty. Maybe the blood pooled in your abdomen until after the BM. I'm sorry I don't have an answer but I do know how frightening it is when we lose control. Hope you get definite answers.

[rach73]

Hi Alicia,

Thank you so much for your reply.

I sweat heavily at night, well actually that's not really true. I sweat heavily when I am asleep. So thats even when I nap during the day. I don't sweat much during the day, just normal for me really.

When I have woken up at night with the sweating I have taken my BP its always low in the 70's / 40's range. I always feel absolutely terrible and can't read the screen of the BP monitor! Luckily mine records it so I can check when I have come around a bit!

My vision started fading before the BM, but I have always been very unsteady on my feet after having a BM, even sometimes just having a tinkle! I have grab rails in my bathroom due to this. Otherwise if I fainted I would take out the shower cubicle LOL

Thank you so much for replying, its good to know that I am not alone and I learn everyday from this site.

Rach

[juliegee]

Hi Rach-

Here is a link to a photo of a woman with a swollen eye like you describe from anaphylaxis. I just thought it would help for you to SEE what it looks like:

http://www.google.com/imgres?imgurl=http:/...%26tbs%3Disch:1

When this used to happen to me, it was usually upon awakening. Coincidentally morning is when histamine is at it's highest. Perhaps your symptoms resolve when lying down as that reduces orthostatic stress. The fact that you feel awful during these episodes is an important clue. What is your HR & BP doing at the time?

Julie

[Noreen]

Here's a link to the NY Times article on mast cell

http://www.nytimes.com/2009/06/07/magazine...cell&st=cse

[rach73]

Hi Julie and Reen,

thank you both for these links, both were very interesting.

Unfortunately or fortunately my eye isn't swollen when I have ptosis, its totally normal it just goes an odd colour like I have the start of a black eye. Its more like the article in the new york times, where I look like I have had a stroke. Right eyebroe drops by about 2cm, right eye closes and the right side of my mouth droops also.

My BP can be lower than normal during these incidents. Normal for me 110/70-120/80. When this happens it can be under 90/60 down to about 72/40. My heart rate can be 85-130. There seems to be no rhyme or reason to when these episodes occur other than my bp tends to be low.

Thank you so much for your help and taking the time to reply to my posts.

Hugs

Rach

[Noreen]

Rach-

Don't ignore a key point - your urgent need to have a bowel movement. Report it to the docs when you relate the story.

I didn't mention it for years out of misplaced embarrassment and ignorance.

Also, another post led me to find this -

http://www.mda.org/publications/mitochondr...myopathies.html

With your ptosis, it might be advisable to look into mito

[rach73]

Hi Reen,

thanks for your reply and thank you so much for the link. It was extremely interesting, especially looking at the family history aspect of things. Migraines run in our family - nothing unusual in that. Deafness is on both sides of the family, so that was interesting as well.

Your not the first person to mention this condition a friend from another forum has mentioned it also. Its just very difficult to bring up with my GP at the moment due to the fact that the consultants have dropped me from the hospital. But it is something I will mention to him at some point.

Thanks again for your help

Hugs

Rach