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Debilitating, intermittent "episodes" of disorientation & brain fog

I'm going to start off by saying my condition/illness or whatever it may be is a medical mystery to six doctors (physicians, neurologists, psychiatrists) and that I am unemployed and rejecting job offers because my condition limits my abilities and brain function. It is a roadblock in my life and I can't seem to drive around it. I am a healthy and fit 24 y/o male who has been suffering from transient, hard to describe disorientating episodes/spells that I first had the pleasure of experiencing at 18. Since then, the episodes have occurred almost daily but do not last all day long - they are TRIGGERED by certain situations and environments. I can feel the spells gradually, but pretty quickly coming on (they don't occur at the drop of a hat) and I actually have the ability to stop them by laying down in a dark room and literally putting a pillow over my face and just "shutting down" for a couple minutes. Weird, I know. The "spells" last anywhere from 10 minutes to multiple hours, depending on if I get to a dark room with a pillow. I've tried multiple migraine medications and none have even remotely helped.

Triggers:

-Focusing on something for more than a few minutes - even talking to a person! I can't even talk to a freaking family member face-to-face without falling into one of these spells. One minute I'm fine and then there's a total disconnect between what I'm seeing and my cognitive function. Depth perception also throws me off here.

-Similar to focusing...when I'm talking for an extended period of time. It feels like my brain is totally deprived of oxygen and I then fall into one of these disorienting episodes

-Light contrast situations, especially when I'm in a well-lit room when it's dark outside. It's like my brain doesn't "agree" with what i'm seeing and the light situation

Symptoms:

In addition to feeling extremely disoriented, the other symptoms include a general feeling of disconnectedness, brain fog, a headache of pinpoint pain in the back right of my head that occurs during most of the episodes, a massive drop in mood and overall emotion (apathy I guess you could say), a minor lack of memory of anything that occurred during one of these episodes (for example if I read 5-10 pages during one of the spells I wouldn't remember specific details of the read but would remember the general theme and whatnot), and extreme cognition trouble (speaking, writing and even focusing on a person and their eyes). One minute I'm thinking and speaking clearly and the next minute one of these episodes can surface and I start to totally jumble my thoughts, words and sentences and I sound like a complete idiot. At this point in the dizzy spell, I want to just lay in bed and cover a pillow over my face in the dark. When I do that, it's literally like hitting the reset button and the symptoms decrease significantly.

I have had an EEG and and a brain MRI - both normal.

These episodes or spells or whatever they are are affecting my quality of life. I used to be a very happy, energetic and social person and now this issue is somewhat holding me back, though I do go up against it daily in hopes that I can increase my tolerance of the spells, which I can't. Any advice, support or help would be extremely appreciated here.

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  • chris2 chris2

    I do sympathize OP. I've had some (not all) of those symptoms and they couldn't find anything wrong. So it made me feel like a fraud or a hypochondriac!

    One thing that occurs to me is did you get a blood panel done? ie for thyroid, B12 deficiency etc. And did you get all the tests for MS? I'm asking about the latter as my MRI for that included the spinal chord.

    I also used to get the occasional migraine - thankfully very rare these days.. A Migraleve pink usually sorts it or if I don't catch it early - Imigran.

    Finally it may sound silly but could it be a spinal issue? It might be worth seeing a chiropractor.

  • Pageside Pageside

    Hi Chris2,

    I got a blood panel a few years back and everything was normal done, but I'm certainly not against getting another. No MS tests - is that a blood test? And as for B12, there was a point when I was actually taking it daily for probably 4-5 months for this specific reason and it did not help at all unfortunately.

    I used to see a chiropractor weekly for 3-4 years because I was an athlete and had some back issues as a result, but haven't gone to see him in probably two years. I'll give that a shot as well. I'm literally willing to do/try anything at this point. Would you mind sharing what your symptoms were like or how you felt and what you did to cope or treat them? Thanks for the reply!

  • chris2 chris2

    At one point it felt like my knees were made of cotton wool and sometimes I felt I was slurring my speech like I was drunk. Sometimes I had difficulty even physically forming the words. Brain fog too. They tested for MS with an MRI of the spine and it was clear. I went for help to a centre at Rawdon nr Leeds run by the MS Society where a visiting consultant said it had all the hallmarks of MS. I had a course of sessions in their hyperbaric oxygen chamber - which seemed to help a little. But Lyme can also have similar symptoms - and I did have what the overseas doc called tick typhus while working abroad. So I also had a Lyme test which came back negative - apparently the test can be unreliable though. I just plodded through and it did all eventually lift but a few years back I started with occasional morning lightheadedness - it felt like an alkaseltzer was dissolving in my head! My memory was poor too. They tested me for coeliac disease as there can be a neurological component to that and also thyroid function (another notoriously unreliable test) and everything was clear. But we eventually found I had been getting a constant low level dose of carbon monoxide at home and now that I have sorted that the symptoms have mostly gone.

    I take sublingual B12 which is supposed to absorb better and a good brand of fish oil.

    Having said all that some of what you describe OP has similarities to migraine. I found mine was linked to certain food.

    Anyway good luck. If it's migraine they recommend keeping a diary to identify triggers.

    More slightly off beam things to try might be something like shiatsu or acupuncture.

    Whatever - it does sound to be very debilitating and you need to keep on at the medical professionals to get some answers.

  • Pageside Pageside

    Thanks for the info & reassurance Chris - really appreciate it. Hopefully I'll hear back from some more people who may be experiencing similar symptoms

  • daniel31171 daniel31171

    I've been having similar symptoms for about 5 years. Neither the duration nor debilitation is as severe as described, but the general "mystery" conditions are quite similar. Perhaps my comments will add to the discussion.

    My "brain fog" or "fugue states"... come every four or five months and last for a day, or (as of yesterday), two days... with intense panic-like symptoms that come and go with a minute or two about every four hours.

    Is all that too much for one sentence?

    I have learned to recognize the onset by the quality of my dreams the night before. They are different, more detailed than normal AND when I wake, I have a hard time either remembering them fully or distinguishing them from something that might have happened or something I saw on television. In other words the edge between dreamworld and waking world is blurred. This goes on for a few hours, then the panic-like attacks start: sweaty, tight vision, maybe a headache and immediate memory loss. (which returns)

    Regular MDs and specialists were mystified, and unconcerned, because of the short non-debilitating duration. The neurologist pleasantly wrote me off as "having episodes of altered-consciousness"

    I'm not too worried these days (age 66). I'm thinking it's a form of residual Lyme. Blooming, having its way and fading, only to come again under the right circumstances (seasonal?, environmental triggers?)

    Dan

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  • chris15711 chris15711 Pageside

    I'm having almost identical symptoms. I'll be feeling good - happy, confident, motivated, concentrated and then bang the brain fog comes, throat feels like it is closing in, inability to concentrate, complete apathy and then alter anxiety and depression.

    Any ideas?

    I've had a a fairly thorough blood panel done and everything was fine apart from h pylori. 

    I have extremely tight muscles if that means anything and i'm only 22

    • Pageside Pageside chris15711

      Hey Chris -

      So sorry for the late reply. I have moved across the country a handful of times since writing this post. 

      I'm still dealing with the exact same symptoms/episodes/spells as described above. Your symptoms sound IDENTICAL to mine, but what exactly TRIGGER these symptoms? Anything noticeable? I recommend keeping a tab on when these happen and then reporting back here or to a doctor so everyone is better able to pinpoint the commencement of these symptom and spells.

      How's everything going for you now?

  • george5030 george5030 Pageside

    Hey guys just checking in to see how's it going for everybody? I started experiencing brain fog on and off but constant a month ago from what I believe is a sinus infection after a very bad flu. It's gotten better but I still experience it, its very frustrating. How's everybody feeling lately?

    • Pageside Pageside george5030

      Hey George,

      I'm still struggling with the burden that is these disorientating episodes, and almost daily. There are definitely good weeks and days, bad weeks and days, and then very bad weeks and days. I've kind of given up on pursuing and reaching out to doctors about this issue because literally no one knows. One of the five neurologists I've seen put it into a great perspective for me,

      "I completely believe what you are telling me - the triggers, the symptoms, these episodes...everything. And, I'm sure there are others out there struggling with it too, but the thing is, this is essentially such a rare, unstudied phenomena that we don't have a name nor a cure for what you're experiencing. Who knows - maybe in 15 years from now more and more people will surface who are experiencing what you're experiencing, and then we'll have a better handle on what's going on and can actually research it."

      How's your situation going? 

  • wendolph wendolph Pageside

    Hello I was wondering if you'd made any progress? Your brain fogs sound similar to the ones I get only I don't have a trigger. One of my neurologists has suggested silent migraine to me. It's just difficult to know when you're having one as you don't always get the headache.

    • Pageside Pageside wendolph

      Hey Wendolph,

      To be honest, zero progress has made. I'm kind of floating along day by day and learning to live with this. Coping, as best I can. It truly has - and still is - making a massive dent on my general well-being. A real burden. As I mentioned above in reply to george5030, there are good days and bad days, and, for the most part, I know when these symptoms and episodes are going to surface due to the fact that I've pinpointed a majority of my triggers.

      What exactly are you experiencing? And what is a silent migraine?? I've tried a handful of migraine meds and none worked, with the most recent being Amitriptyline. Man, that stuff just knocked me the F out haha. 

    • wendolph wendolph Pageside

      Hello Pageside, I love your comment from the neurologist about finding a cure in 15 years. I always imagine Bones from Star trek would zap me with his scanner and diagnose me in seconds and say heres a pill. Lol.

      A month ago i had an attack so popped into my gp, i could hardly walk, lightheaded, shaking stuttering, not able to concentrate and i tried to explain my symptoms. I couldn't understand when he said put your finger to your nose and i tried putting my nose on his finger lol, i managed to touch my nose but missed his finger touching the side not the tip while shaking. He said my breathing was uneven and my heart was racing. My gp actually said if they haven't found anything by now its probably panic attacks. The thing is going to see him slightly panics me as i know he'll send me away.

      I have not been tested for every condition and 10 minute appointment twice in a year with no follow up is not exactly trying to diagnose this. Unfortunately I have never had an episode while seeing a neurologist. Sometimes I wonder if my tests are on the low but normal edge of the spectrum so to a dr all these tests read normal but adding up they mean uh-oh

      its hard to explain these symptoms and there are so many conditions. The key is study yourself while the symptoms are happening. Ask yourself questions. I noticed last week my legs weren't walking properly so i thought ok am i paniking? No, im completely happy, im thinking clearly not lightheaded at all, so the walking problem must be different from the light-headedness problem even though sometimes they happen together.

      Recently i found i had a low vitD count so im taking vitD supplements and a multivitamin which includes magnesium and potassium etc as my gp didn't test for these when I asked. This week i feel amazing the best i have in a year.

      I have no idea what a silent migraine is lol, he said its a migraine affecting your vision thought other functions as a normal migraine but no headache so you carry on with things for longer so symptoms are worse. He suggested beta blockers but i was on antidepressants at the time and didn't want to mix them. My gp ofcourse said there more for palpitations and wouldn't give me them.

      Basically my symptoms come and go over the past 15 years. Im hypothyroid. Sometimes my legs don't walk properly its like wearing moon boots filled with concrete. This uses up all my energy and i start getting lightheaded, disatatched , confusion, i have to really focus. At the end im really panicy. But my walking is possibly separate. I thought walking might be a trigger , i can do heavy work and gardening and be fine but later it sometimes happens. Its happened talking to my friend but she didn't seem to notice . Sometimes when im just doing general stuff around the house it happens. Lightheaded, dizziness, confusion, trembling, unsteady, unfocused. If its severe even personality change where im shouting you don't care in my lovely slurred speech. But thats rare. I describe it as being drunk or having a hypo . My dads a diabetic and his hypos look like how i feel . I had this a month ago but only for a few days. I had it 2 years ago lasting a couple of months etc.

      I know its not nothing - maybe in 15 years.... Hope some of this helps.

  • benjamin5482 benjamin5482 Pageside

    Hi Pageside, 

    I can absolutely relate to many of the symptoms listed here. For nearly 3 years I've been battling a lot of baffling symptoms too, but the main irritant is a recurring fogginess and sense of emotional disconnection. I've had a number of tests, but nothing to shed any light on it yet. It seems to be exacerbated by talking and that leads me to believe that it may be TMJ related, as i have had on and off jaw clicking and stiffness issues for at least 10 years. It's so difficult to describe the sensation, but frequently i feel like my brain is deprived of enough oxygen, or that my head is filled with concrete. There is a noticeable decrease in cognitive processing. It's like driving a car with the hand brake firmly on.

    In additon to the fogginess and jaw clicking, I notice other things intermittently like a feeling of fullness in the ears and high sensitivity to noise. It's so difficult to know what is causing what and how everything is interconnected. I find that Drs are so willing to ascribe everything to stress, but in my case, the physical symptoms came first, and then as result of that I think my stress levels rose over time. It was not the other way around and I was never a stressed / anxious person previously.

    Anyway, very interested to hear if you've managed to shed any light on what caused your issues. 

    All the best, 

    Ben

    • Pageside Pageside benjamin5482

      "Drs are so willing to ascribe everything to stress, but in my case, the physical symptoms came first, and then as result of that I think my stress levels rose over time"

      Dude, that is me to a T haha. Everything just started spiraling downwards...increase in episodes leads to more anxiety, more anxiety leads to more episodes. And yes, I know that anxiety can exhibit some pretty nasty physical symptoms, but I get these intense symptoms and reactions during times of ZERO stress, like when I'm on a freaking beach with all of my buddies in the middle of a Saturday when there's literally nothing to worry about. The talking and focusing on someone's face can trigger one of these episodes, which I think is absolutely more neurologically based. 

      I'm convinced it's some sort of Sensory Processing Disorder which can exhibit themselves in weird ways. And as I said above in response to george 5030, one of the five neurologists I saw put it this way (btw he doesn't believe it's anxiety or stress related either, but that the two can exacerbate the situation):

      "I completely believe what you are telling me - the triggers, the symptoms, these episodes...everything. And, I'm sure there are others out there struggling with it too, but the thing is, this is essentially such a rare, unstudied phenomena that we don't have a name nor a cure for what you're experiencing. Who knows - maybe in 15 years from now more and more people will surface who are experiencing what you're experiencing, and then we'll have a better handle on what's going on and can actually research it."

      Do you know what triggers your fogginess? It's super important to take notes of the things that do, because this is the first step towards realizing WHY these things are happening. It's like...why the hell is this happening to me right now? Can I avoid this? Since I noted my triggers I've been able to have more useful conversations with doctors and also other commenters on this page. 

      Have you seen a neurologist by any chance? I'm always interested in learning what other doctors have said regarding this matter!

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  • Calvinharris Calvinharris Pageside

    I have the same thing man

    How you going any answers mine started after digestive issues

  • traci70474 traci70474 Pageside

    Please tell me if anyone has uncovered any answers to these episodes. My 18 year old is experiancing her 3rd spell and it is beyond devasting. I feel so helpless and doctors seem to have no answers and I have no idea where to turn sad(

    • wendolph wendolph traci70474

      Hello, everyone has slightly different symptoms, its that hard to diagnose even gps and neurologists struggle, they rely on what you experience. Keep a diary, what you've been doing, what you've eaten, what does it feel like exactly, what do other people notice? Pale, slurred speech, shaking, personality change, weakness?

      I didn't have an episode for about a month and I thought my multivitamins and vitD had solved it, then Friday after a long drive and no meal by 3pm I could hardly move and just lay there like a zombie, so with me perhaps tiredness and not eating is a trigger, however most people don't get affected this way even if it wasthat.

      Drink lots, eat healthy, exercise don't let the dr tell you its just dehydration or panic attacks . Sometimes with some people it is, but there are so many forums describing these kinds of symptoms it must be something.

    • Josh 76 Josh 76 traci70474

      traci70474 I had very similar symptoms to yours.

      Detached from reality and felt like I was in a dream. I could

      speak but felt real slow. My eyes seemed to be blurred and my heart would race. I dealt with this weekly for 5 years until one

      night after work I had a gran mal seizure for 30 minutes. I

      don't remember anything about it except waking up in the

      hospital. Dr's ran lots of test and put me on anti epileptic medicine. After several more seizures I am now doing much better. The old symptoms of the dreamlike state is very rare as well.

      Maybe once a year.

    • gina83634 gina83634 Josh 76

      Hi josh, ive been experiencing these symptoms for 4 years it started from nowhere, to me it felt like epilepsy but without the seizures, the doctor told me this is impossible, im feeling like this about 4 days a week, i just wish they would stop putting it down to anxiety. As sad that it is that so many people suffer this illness im glad im not alone.

    • faz1234 faz1234 wendolph

      Hello, was just reading your posts and was wondering if your DR did a test to check your IRON levels (I mean your Ferrous Sulphate levels)? Note that this is different from all the B Vitamins incl B12.  Lack of FS in the body or if your body is unable to absorb for some reason can cause all sorts of problems mentally and physically such as dizziness, disorientation, panic attacks , shortness of breath, breathing problems etc etc. This is just a thought - that something as simple as that can result in bigger issues. 

  • traci70474 traci70474 Pageside

    I appreciate your reply. Trust me, I have documented EVERYTHING. My daughters first episode was summer 2013 and lasted 8 days. She was fine for several days following and then boom~hit again for another week. She explains not hearing herself speak~a disconnect from reality, everything seems "dreamlike" and she has very very little short term memory. She basically slept non-stop during each episode and I've noticed she seems to crave sugar???. After no sign of this damn fog for nearly 2 years its back. She feels it coming on and can tell when shes "getting better" aka-headed back to reality. This time much like the first episodes is following a medical proceedure, antibiotics, and running hard with little sleep. 

    Its outrageously frustrating, this is an 18 year old girl and doctors can provide ZERO feedback. We must find answers and I pray the solution to rid her of these episodes. 

    • wendolph wendolph traci70474

      I had exactly that as a teenager I called it an energy loss , shaking, weakness, eating half a bag of sugar. Diabetes tests and all other test normal. Have her thyroid tested just in case but those arnt really symptoms but I have an underactive thyroid which effects every function in the body. Vitamin check etc

      As she is a teenager, drs think it will pass im afraid. Keep at them and insist its not normal and potentially dangerous , maybe get reffered to a neurologist or endocrinologist . Good luck x

    • traci70474 traci70474 wendolph

      Thank you so much for your reply. This is such a crazy scary time and its just the worst when doctors shake their head and look at you as if youre crazy or all is simply "in her head.". Our daughter is an active no drama girl, just graduated with honors and is due to head off to college in August. We have been to an endocrinologist and nuero doc, had thyroid tested, tested for lyme, we've done full bood panels, MRI, catscan, spinal tap...etc etc. All "normal." UGH....I know someone out there can help, it's just finding that someone.

      Thank you again for sharing, there is peace in hearing others stories. It helps to know we're not alone. Happy day to you!

    • Calvinharris Calvinharris traci70474

      It sounds like your daughter is suffering from depersonlization/derealisastion

      Its completely harmless and is a symtom of anxiety

      Some people have it for years some people it lasts for a day

      Alot of people get it after smoking pot and having a panic attack

      There is acually a movie about it called "numb"

      Please look into this there is a ton of information and the best way to overcome it is to compeletely accept it or try ssri medication

    • DogDays DogDays traci70474

      IANAD, but I would like to suggest asking a physician to order a white blood cell labeled SPECT scan, or one combined with a CT, and to focus on the neck and head. Inflammation may be overlooked in a regular MRI or CT, but the WBC-labeled scan will allow it to most easily be noticed. Increased pressure inside the head and neck pressing on cranial nerves or the brain stem might cause these problems.

      There is a lot of research pointing to dietary triggers of inflammation, such as grains, gluten, and other foods, as they alter or feed the gut flora, and possibly result in a bodywide inflammatory response. Trying a strict diet, and beng vigilient about logging reactions to foods, might offer some insight. 

    • Pageside Pageside DogDays

      When I fall into these "episodes" or disorientating "spells" I always feel pressure towards the back of my head, specifically the back right. It's a pinpoint pressurized sort of pain and it goes away when the episode goes away. I've always thought it was something ostensibly physical like this...I'm definitely going to look into a neck scan. I have gotten brain MRIs and CT scans but they looked specifically at the brain, and nothing else. I like where your head is at (no pun intended) because I've always felt this could POSSIBLY have something to do with this issue of ours.

  • Calvinharris Calvinharris Pageside

    Also guys if your episodes are only 20minutes look into reactive hypoglycaemia

    It is from a drop in blood sugar after comsuming a lot of sugar/carbs

    Emis Moderator comment: I have removed the link to the specific site as users can Google the term.

    • wendolph wendolph Calvinharris

      Hello Calvinharris, one of my drs suggested this years ago but I was never tested for it. Its quite possible and I often think mines energy related. Its not always after food though, sometimes its hours after or when I haven't eaten. Ive had it alot while on weight watchers or daily when working. My 3 aunts have mitochondria but my dr won't test me as its a maternal disease and they are on my father's side of the family. My mother was never tested for it. My episodes are rare but my low energy is more frequent perhaps daily the older i get but i have low vitD too.

    • teres teres wendolph

      Hello All - Im new here and was passing by because I was also considering getting testing for MS.  Several months ago, I was diagnosed with a blood condition:  Hyperammonemia.  My liver is not properly filtering toxins (particular ammonia) so I get fog, confusion, forgetful as in alzheimers, blurry vision, headaches.  This was discovered on a fluke and was done by running a fasting blood ammonia test. Ammonia is a neurotoxin an causes dementia like symptoms in addition to wreaking havoc on your bones and joints.  It is not generally done in the normal course of doctor tests so you have to request it. In my case I had seen a kidney specialist and told her I was tasting ammonia... quite nasty by the way in the mouth.  My levels were retested several times and were at 150 which is at the level of coma for some people.  Im educating others to have their ammonia test but be sure they ice the specimen right away.  As it turns out, I will be getting a diagnosis of some form of metabolic liver disease because my liver athough healthy in other aspects has not been filtering out the toxins and ammonia is deadly to the brain.  Please check this out.  The liver and brain work together.  If liver is not filtering or kidneys not working, you can have a blood condition affecting you all the way around.

    • Pageside Pageside teres

      Thanks so much for the insight here teres. Very interesting that you started getting an ammonia-like taste in your mouth...do you know what caused this? Were you a drinker in the past? Still are? Genetics? I'm willing to try any/all tests at this point.

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  • marianne93130 marianne93130 Pageside

    I suffer from very similar symptoms as most of you on this forum. Not only cannot not bring the word forward at times by the time I get the one word out 3 times in a row, then Zi can't remember the rest of the sentence. It's so embarrassing. When I have bouts with it I sometimes notice swallowing difficulties as well. I'm currently being put through lots of tests at the Cleveland Clinic. My heart beats very rapidly, i have delayed gastric emptying, and chronic urinary retention. I have been diagnosed with Dysautonomia. It is a degenerative condition of the autonomic nervous system. I have a condition of the parasympathetic nervous system as well. There are many different conditions but they umbrella them all under Dysautonomia. There is Multiple system Atrophy that they are trying to rule out right now with me. I have five biopsies tomorrow and a thermoregulatory test. A good neurologist is who you should see and a endocrinologist because with women especially it is something as simple as an extremely low TSH. Hope this might help someone.

    • Pageside Pageside marianne93130

      Hi Marianne,

      So so sorry for the delay here. I haven't logged on in awhile since visiting this forum used to cause me disappointment in the fact that I was still dealing with this condition at the time. The fact of the matter is, I'm still experiencing these episodes and almost daily, but I'm coming to terms with them. I've rejected jobs that I know I cannot fulfill, I avoid situations and environments that I know will trigger these episodes. Sucks, yes, but if that's how I have to live my life, then so be. I've come to realize that I won't be "normal" from here on out, unless I one day miraculously wake up and the condition is gone. 

      Please tell me how Cleveland Clinic went, I'm extremely interested. I have always wanted to toss everything aside, shut down for awhile and check into the Clinic to see if I can figure this damn thing out. I do foresee myself going there one day for this exact reason. Feel free to message me directly if you don't feel like sharing your Clinic review and any diagnoses and treatments publicy. I truly do want to hear about the experience.

      Shaun

    • william52109 william52109 Pageside

      Hi,

      My wife has had the same exact issues right down to the exact same placement of head pain. But with her she also developed a white tongue and really irregular periods. We've been following your story with great interest.

      Like so many others we have read about possible vitamin D deficiency, MS, and even down to something as simple as hormonal imbalances. Her vitamin D is in the low deficiency range, and right when we went to go get her hormones checked and start with brain scans, she hot pregnant so now it isn't possible for us to do that.

      We are so desperate to find answers as it is impossible for her to function in every day life. She doesn't want to clean or go out because the symptoms are debilitating. I hope you figure it out or we do so we can help each other.

    • Mamadyer Mamadyer Pageside

      Okay, first of, let me say, I am NOT a professional-- it's just that what you're describing sounds extremely similar to what my husband experienced for years. He referred to them as 'spells', and would have them three or four times a week by the time I met him.

      His parents sent him to a therapist (!) because they thought it was some sort of panic attack.

      After we'd been married a month or two he had a grand mal seizure, which prompted the drs to do an eeg. Eeg showed abnormal brain waves, he was prescribed anti-seizure medication. He has not had any spells or seizures since then--(except for the couple times he tried to wean himself off the meds.) That was over 22 years ago.

      Before he was diagnosed, I witnessed a couple of his 'spells' and it just looked like he sort of spaced out, but I wouldn't have thought it was a big deal. Except that when he came out of his spells, he'd be so pale and cold and sweaty, and just ill looking.

      Anyway I hope you find your answer, I am sorry that you're suffering.

      Laurie Dyer

    • rikkijo314 rikkijo314 Pageside

      Have you had an EEG performed by any chance? Your symptoms seemed very similar to what I started dealing with a few years ago except my episodes usually caused a lot of vomiting. I thought it was an issue with my eyes because it would happen if I were to read a book for too long, look at a computer screen for a while, or drive at night and stare at on coming headlights. Then the headaches would start. In the back of my head and it was just awful. Anyways, I have now been diagnosed with occipital epilepsy and take an anticonvulsant everyday. It has helped tremendously! I talk to people without slurring, or even more embarrassing, having to excuse myself to vomit!

      I hope you are doing better, I know this is an old thread I just found it and thought I would chime in.

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