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I used to have very very bad brainfog, it was like I felt very disconnected a lot of the time, it was pretty visually horrible as well. For me personally amitriptyline has helped with the brain fog, it almost seemed to block out that symptom a for me, I originally started it for migraines but it helped a few other symptoms that I really had no expectation of it helping. That being said there's still days where I'm brainfoggy so in my case it doesn't completely go away but it has been made much better.

Hey thanks for the replies this has been interesting for me to read, Kaybug your "2 scenario" thing is almost what I feel like when I get my POTS "presyncope" feelings, and I too notice once this starts I get immediatlly extremely irratable. But its weird I don't see it as a passing out or fainting type feeling, its just like my whole brain is crashing, I explain it to my doctors as though my brain feels like I just got out of a bad car crash. Do all of your "presyncope" symptoms get better quickly after sitting/ laying down, or do they extend longer than that? Because with mine its like once I push myself to where I get these symptoms I'm recovering for days, as though the experience is really hard on my brain.

I was wondering what everyone elses' "presyncope" symptoms are like? I remember nearly fainting when I was younger and the experience was pretty distinct in my mind; strong stomach nausea, feeling really flushed/ hot, and that sort of panic attack like anxiety, and every step felt heavy like I was going to pass out. However my POTS reaction from exercise/ physical exertion which my doctors have labeled as "presyncope symptoms" are not similiar to my above experiences at all, now my vision starts to feel hazy/ foggy, not really much nausea, no panic feelings, no flushed feelings, I do start to feel like my arms and legs feel weird like I'm loosing connection with them a bit (hard symptom to describe) and my brain just feels awful, like I'm really detached/ mentally in a dark cloud, and idk how to describe it but it's like my brain feels like its been through a car crash. And these symptoms aren't really helped by laying down, drinking water, pretty much anything except time and not exerting myself phsyically much for the next few days. Just interested to hear other peoples' experiences.

Hey artluvr09, I also get different types of experiences where things feel "dreamlike" or not really real. One of my symptoms is depersonalization which is basically where you feel disconnected from your surroundings or yourself, usually I have both simultaneously. But also on different days if I have a good amount of brainfog, or like you sleep terribly it will be like I'm walking around in a cloud all day, and I just feel disconnected from things. On those days I just eat alot, drink a lot of water and just limit my activities, it depends on the day but usually it gets better as my sleep cycle is more normalized.

I was prescribed topamax before but didn't end up taking it because the long list of side effects, in my case the anti-siezure meds were the 3rd type of medication that my doctors tried on me, and I think they only go to those if other medications prove ineffective. In the past however I have tried verapamil (calcium channel blocker) which didn't stop my headaches but works for some people, nortriptyline (tricilic antidepressent) which gave me side effects, atenolol (beta blocker) again side effects though probably from my POTS which was undiagnosed at the time, and then finally amitriptyline (tricilic antidepressent) which is sort of like the older form of nortriptyline, and this has helped my headaches and I'm still on it. It can however make POTS worse, so I'm basically on the lowest effective dose. What I found also is I start with the lowest does of the meds possible, sometimes even taking half the lowest dose (this is approved by my doctor) and then instead of increasing the dose after the typical 2 week increments when titrating up in dosage, I would take a month, which greatly reduced the side effects.

Both of my TTT were without any IV's or meds, the actual tilt up part I believe they did for 10-15 minutes so it was a short one as well, I think they also have a much longer one but I think the shorter is more typcially used. My TTT results show that I have POTS but it doesn't accurately show the severity of my symptoms, if doctors just went off of how my vitals responded during a TTT they would think I had a mild case, but that is far from the reality. Is your doctor an autonomic specialist? And did they take a detailed history of your symptoms as well? I think it is a combination of the TTT as well as symptom history that allows them to make a diagnosis.

My doctor told me its not really about how much you drink throughout the day, but that you basically load up on water a few times a day. For example he told me to drink a liter of water basically first thing when I get up in the morning, and that doing this is different than if you drank the same amount over the course of the first 2-3 hours when you wake up.

I think it is hard sometimes for doctors to give a concrete diagnosis because especially for POTS. I have felt from my own experience that some doctors rely soley on the tilt table test numbers. For examply my TTT always shows the 35+ heart rate increase, and I feel lightheaded and get the blood pooling in my legs, however my hr and bp stabalize relatively quickly, so I've had some neurologists tell me I only have a minor form of POTS, because they have had other patients who really crash on the tilt table test. And then I've had other POTS literate doctors who take a whole history on my symptoms and see me as a patient who has quite severe autonomic dysfunction. I think its quite possible to have POTS/ dysautonomia, with the orthostatic hypotension not being the most sever symptom.

I get this every once in a while, sort of feels like tingling/ numbing feeling, for me its usually related to some sort of migraine phenominon, sometimes it will have a headache with it, other times like you said a weird feeling of being a little out of it, not myself, my vision will be weird and sometimes feel like my eyes are trying to cross or have pressure around them.

I can't relate to the heart pounding, but when I do get a migraine headache, or other migraine symptoms like vertigo, visual sensativity and things of that nature it it can have seemingly long lasting effects. As I said in one of your other migraine posts, my post headache symptoms typcially last at least a week, so thats a week of feeling a bit out of it/ hungover, emotional swings, very sensative visually, easily overstimulated, and typically my head will still hurt the day after esepecially when doing things like bending down to the ground or any postural changes that makes more blood rush to my brain. Usually I just rest alot, drink a lot of water and gatorade, eat as bland as I can (banans, rice, crackers, water), and slowly wait to come out of the "fog". And I avoid watching too much tv or being on the computer because its just more visual stimulous that it starts to irritate my vision. You can also wear sunglasses all day, your family members may look at you weird but I've had times where its like the brightness on everything was turned up a few notches.

My migraine "hangover" somewhat parlelles to what everyone else has explained; feeling tired, mentally and visually a bit out of it, very sensitive in all areas of sensation is a good way I would put it, visually lights are more obnoxious and seem brighter, too much noise seems a bit overbarring, stomach sensativity, usually I get bad anxiety/ ocd the days after a migraine, and doing things like watching tv for too long, or being on the computer seems very draining and visually annoying. My hangover or postdrome always lasts at least 5-7 days, which I think is long compared to the average migrainer, but everyone's different.

I would just make sure they explain to you what your diagnosis means, and go over any possible treatments that may be helpful. Just make sure that any concerns you have are being addressed even if the doctor seems like they only have so much time on their hands.

Hello Circuscat, first and formost welcome to the forums, I think you will find that everyone here has spent at least some amount of time going from one doctor to another trying to find answers to no avail, and recieving many alternate diagnosises. For me personally it took about 5 years before my doctors diagnosed me with POTS. Fluid and salt loading is always a good start, my cardiologist told me to drink a liter of water when I wake up in the morning, pointing out that loading yourself with water like this is different than just drinking seperated glasses throughout the day. I also add salt to my water, though I know they make salt pills, or some people eat a lot of chips for the salt content, or my cardialogist recomeneded even drinking pickle juice because of the high salt content. Wearing compression stockigns can also help, do you find that your nausea is due to changes in body position? I know I will start getting nausea if I am up for too long, compression stockings sometimes help this. Have you had a tilt table test done? Or been tested for ehlers danlos? one symptom of theirs is the extremely flexible joints you mentioned. Also are your headaches related to change in position? many of us have migraine, but others have orthostatic type of headaches, or head pain.

If you don't mind my asking, what symptoms were you having from RCVS that first brought you to the ER?

Welcome new members!

Here's one medical document about the "visual snow" theory vs migraine aura visual phenominon, Dr. Shankin and Goadsby are the only two doctors I know doing some research on the topic: http://brain.oxfordjournals.org/content/early/2014/03/18/brain.awu050 . There is a number of different disorders I know that are thought to be linked to visual snow or at least visual snow as a symptom is seen with these disorders; they are migraine, a migraine variant called persistent migraine aura without infarction, hppd (hallucinogenic persisten perception disorder), depersonalization disorder, add, and then a number of us also have it. In my case its persistent and really doesnt seem to have anything to do with my migraines (I have migraine with aura) because it is persistent and really doesn't ever change very much, I attribute it to my depersonalization disorder since it is somewhat common with that. Though I read some article about a patient who would only get the visual snow as a pre migraine headache type phenominon, or when her migraines were more of a problem, so it might be different for everyone.

I've had visual snow for about 6 years now, though I don't know if in my case it is related to my POTS or not since I had it long before my POTS symptoms were very troublesome. Some of my doctors attributed it to migraine rather than POTS but I know there is at least some preliminary research being done by Dr. Peter Goadsbye (might have spelled his last name wrong) up in San Fransisco, and he believes that visual snow is independent of migraine, but I'm not sure what sort of disorders they typcially see it in. Do you also get afterimages? Or trails from moving objects, like from wavaing a hand in front of your face?

I get this as well, "detached" is the best word to describe it. I also have depersonalization disorder which the main symptoms are this constant feeling of detachment from your surroundings and yourself, but I've noticed as my POTS symptoms got worse it seems to have its own form of "detachment" or "depersonalization" sometimes one day will just be worse for no reason, other times its related to too much walking or physical activity.

Unfortunately it may be difficult to find a doctor in your friend's immediate area, however in Chicago there is Dr. Barboi and Dr. Gilden, both of whom I've seen, Barboi is a neurologist, and Gilden is in internal medicine. And you could always look at Mayo clinic which takes some time to get into but has POTS doctors that are very knowledgeable in their fileds.

I just try to eat a lot of foods with b2 and magnesium, but studies seem to show that b2 is good for migraine patients, more so than magnesium which was thought to be one of the better migraine preventative supplements for a while.

I definately can relate to this, different days for whatever reason seem to cause different levels of anxiety/ depression for me, as well as the severe irritability. The irritability can definately be bad for me if I do something that I know is going to throw me back in bed for a few days, or some days its as if from the moment I wake up every little thing seems to bother me too much. I try to just recognize it as a physical symptom (since I'm typically a very liad back person), and just try and give myself that needed space until it passes, but certain occasions it can be very difficult especially like you siad with those episodes of irritability where you feel like you can explode, I hate that feeling.

I was on atenolol for a while, because I guess its one of the few beta blockers that don't cross the blood brain barrier so my neurologist thought it would be better for me. Anyway while I was on it I felt constantly like I was set back from everything, not exactly like tunnel vision but sort of in that direction, almost like I was in a bubble. I also could only focus on one thing at at time, like if I was watching tv and someone was trying to talk to me I had to choose one or the other. I have depersonaliztion disorder so having that disconnected, things seem foreign or daydream like feeling is pretty normal for me, but the beta blocker definately didn't help with mental clairity, so now I'm off it.

Hey Katybug, thanks for the reply, they had an incline going the whole time and then ramped it up a bit more after the first half minute or so, so its definately more of an incline that I've been used to on any of my other bad exercise experiences. And I'm not sure about the adrenaline thing, usually I find when I go into test my hr tends to be sitting pretty high, like 105-115 just sitting there doing nothing and usually I feel like I can do less when my hr is high, or I have alot of anxiety, so this is all still a bit of a mystery to me. I'm noticing now, later in the day that I'm feeling a bit worse, and it seems laying down feels worse than sitting up, another weird one. Idk it's hard to conceptualize what is exactly going on in my body, and trying to make any sort of real sense of it.

So I find myself at a bit of a loss as to what to think about my condition right now; for the last two years I've been "exercise intolerant", basically I'll get an onset of head pain, vision/ perception problems, and general just feeling awful inside, and the next 6 days to a week in a half my brain feels awful, like I'm recovering from a concussion or something (never actually had a concussion, its just what I assume it would feel like). This reaction has occurred over and over again, with me exerting myself less and less, even walking a few blocks at a normal pace could trigger it. So today I had a stress test which I expected would trigger this same type of post-exertional reaction and I'd be in bed for a week or so. But here's the weird thing, while walking on the treadmill and waiting for these symptoms to come, they didn't, I eventually felt some minor lightheadedness but I was still able to get my bp up to the 150's which is way higher than I've probably done in the past two years, and even my legs felt like I worked them for the first time in forever. After the echo while we waited for my hr to come down (it stubornly sat at 115 for some time) I started to feel a little bit worse, having some of my post exertional symptoms coming on, but overall I'm feeling ok, not great, but nowhere near to where I typically would be. It just doesn't make sense to me that I can slowly walk a short distance and get horrible symptoms, and then actually push myself a bit and not have as bad of a reaction. Now I'm not sure what to think, because my reaction to physical exertion was and typically is so consistent for such a long time, I just don't get why today was different? Sorry for the long post.

I've definately had some of the panic attack like episode; with me they were always random as well, never occuring because of an anxious sitution just coming on out of nowhere. I stopped having those since last year though I'm not sure why. Also I was on gabapentin for about a month, which is pretty similair to lyrica. It didn't affect me that much other than the first day where I definately felt like I was in a noticably calmer state them normal. To me it feels somewhat similiar to taking a benzodiazepine, which I guess both drugs work on gaba receptors, but I stopped it because it really didn't help any of my symptoms, though it didn't hurt them either.